The “tell me a fun fact about yourself’ questions must be pretty easy for you to answer, you have HSAM!”
I have heard this several times before in the context of ice breakers, job interviews, you name it. It seems pretty obvious what my fun fact should be.
Fun fact about me: I never use having HSAM as my fun fact anymore. This may be why some people in my life still do not know I have this ability, and some of my closest friends didn’t know for years. And it’s not that I don’t want to share about my memory ability, I just know how careful I need to be.
Here are two reasons I choose not to share that I live with HSAM as a fun fact:
The first is if I am going around in a circle of twenty people and say “Hi, my name is Markie Pasternak and my fun fact is I live with Highly Superior Autobiographical Memory”.
The next question is, “What is that?” So I explain Highly Superior Autobiographical Memory (HSAM) is a memory ability allowing me to remember every day of my life in extreme detail. I tell them if you give me a random date between 2005 and now I could tell you what day of the week it fell on, what I did, current events, weather, most anything.
And then one of two things happen. The first is I am not believed. “That can’t be true, no one can do that”. And then this results in me sitting there trying to prove I have an ability I already know I have, running around a calendar in my mind racing from one date to the next using my energy to recall details and moments of my life to prove myself.
Sometimes people do not blatantly say “I don’t believe you” but they will ask me a random date I am not prepared to recall. I sit there anxiously checking and rechecking my logic. “Well if Jill’s birthday party was on June 25th in 2007 and it was a Monday, and Michael Jackson died on June 25th in 2009, that must have been a Thursday considering leap year. Wait I can see what I was doing. Can I? What if I am wrong?” And the more anxious I get, the less fun it really is to recall.
Getting random dates thrown at me when I am unprepared is also hard because every day is not a good day, and how do I know which day on the calendar I will sent back into? Since I do live what I would consider a very fulfilled life, full of loving and close relationships, it is likely a date thrown out at me will be a good memory. But there are bad days and when I recall them they actually come back, almost as real as the first time. When it rains it pours.
The other thing that happens if I use HSAM as my fun fact is people will start asking all the juicy questions “Are there other people like this?” “Why can you only go back to 2005?” “Do you remember every conversation you’ve ever had?” “How does it affect your dating life?” Those are pretty standard questions, but I’ve gotten some strange ones too.
One time my friend told her new boyfriend about my ability and his first question for me was, “Wait, so you can remember every day you’ve ever eaten pizza?” A little taken aback I replied, “Well, yeah I guess I could if I really wanted to.”
I kid you not, my ability to recall which days I have ordered from Dominoes or Papa Johns actually blew this guy away.
When I use HSAM as a fun fact I recognize it has the ability to dominate the conversation. Other people have other super fun facts, and I do not want to either sell mine short by saying it and not explaining how significant it is in my life in order to not dominate the conversation or have it take over the rest of the conversation to explain how significant and intricate it really is.
Not making HSAM my fun fact has actually led me to keep a list of other fun facts about myself in my bullet journal, so I do not default to it. It includes things like, “I grew up as a figure skater” “, “I am absolutely terrified of birds” or “I spent a summer working on a farm that was turned into an art studio where I taught fused glass art.”
When I am not going around a circle saying a quick fun fact to strangers, ILOVE to talk about HSAM!
I have enjoyed doing interviews for newspapers and TV shows because I am given the space to explain myself and my ability for it is. I love talking to journalists about my memory, how it makes me feel, what I see when I am recalling a date, why I think my HSAM may have developed in the first place.
I love telling my friends about the other people who have HSAM and sharing their stories and how our memories are contributing to research to combat things like Alzheimer’s disease and depression. I even just like to discuss memory and general, why do we have attachments to our autobiographical events and how does that make us, us? And that is what I hope to talk with you about in this blog, I want to answer all of your questions, whether you are a psychologist or just someone who stumbled upon this website, about this rare condition from the perspective of someone who has it.
The University of California Irvine (UCI) is doing fantastic research on HSAM and has published numerous articles about how it impacts different types of memory, the similarities and differences between people with HSAM, and many other psychological topics. But as there are only around seventy of us living with HSAM in the world, I think myself and the other “HSAMers” as I like to call them, have a unique perspective to share with the world on what it is like to live with total recall. I believe our narratives can prompt more questions about HSAM and memory research in general. I also think our voices can challenge people without HSAM to take a good look at their own memories- how they are formed, recalled and manipulated to create the unique person they are.
Back in 2016, Friday, April 24th for those of you testing me, I was at UCI participating in research and filming a segment on HSAM for 60 Minutes Australia with one of the other HSAMers, Becky. We were sitting in a courtyard outside of the research building and an older man with a long white beard started to walk towards us. Becky and I both knew who he was and we were immediately starstruck.
It was Dr. James McGaugh, the researcher who discovered HSAM back in 2006.
He approached us, knowing who we were, and jokingly asked us to recall a random date. We both answered, me telling him about what I was doing in Wisconsin five years ago and Becky telling him what she was doing in Australia. But then the conversation got deep. We asked him, “how can we help with your research?” Since we have this ability and you and other researchers are trying to find out more about it, what can we do to help you? And his answer was simple: write your story, uncensored and unprompted, tell us about what it is like to be you.
This brings me to the second reason I do not use HSAM as a quick fun fact: my story is precious and requires a lot of context.
Just like anyone’s story, it is something you must handle with care. The story of my HSAM can be quite deceiving, coming off as just a fun party trick. But impressing bartenders to win a free drink once in awhile because I can tell them what day of the week their birthday fell on ten years ago is just the tip of the iceberg. Buried in the reality of HSAM are a host of difficult things like mental illness, anxieties, grief and trauma, but yet accompanied by a plethora of good things like nostalgia and access to different parts of your mind and the past itself.
When I was a freshman in college, I attended a profound talk by a local mental health advocate named Sue McKenzie. Sue worked in the Milwaukee area sharing stories of people who had gotten treatment for a mental illness. During her talk she addressed what it truly meant to share your story, and her metaphor always stuck with me.
Sue told us a personal story is like a gemstone. Maybe it is a diamond or a ruby or an emerald, but each story is different and precious. And because you own this gem, you have control over what you do with it. You can cusp it in your hands and peak at it through the cracks of your fingers, letting no one else see it. You can open your hands up and extend them away from yourself to show someone else your gem. You can choose which parts to show. Do you want people to see every edge and crevice, or do you just want them to be stunned by the initial color and shine?
There is an element of vulnerability when you hold out your gem to someone else. They could say something about it that hurts you, have a reaction to it you did not want them to have. They could even take the gem away from you, it could get scratched or even broken once it leaves the safety of your own hands.
But if we do not take the chance to share at least some of our memories, then no stories are ever shared. And when people’s memories and stories are shared with others in a careful and compassionate way, they have the power to be inspirational, a motivation for new ideas and change.
This idea really resonated with me because I had always viewed each one of my memories as a gemstone.
Each of my personal memories illuminates a different color, representing the emotion or season it was constructed in and each one is carefully labeled with a date and stored in my own mental calendar. Because memories are malleable, able to change whenever we recall them, showing my gemstones can be frightening. To know my perfect, untouched memory, could be shaped in a different way by another person or even by simply recalling it is a lot to fathom. And as I have talked with other HSAMers, it seems we all view memories in this similar way- as our most prized possessions.
HSAM isn’t my “fun fact” because it requires me showing my gemstones to a large group of people without being able to tell them how careful they need to be with my treasures. This blog will be full of gems I am choosing to share with you- some prettier to look at than others.
With all this said, I hope you will share my gems in a way that will add value to your life and the lives of others. Through this blog, I have the space to tell you all you need to know in order to handle my gems with care, and I am trusting you to do so.
However, my greatest hope is when you go out and share your own memories with the world, the precious moments serving to make you who you are, you will treat them like precious gems as well– because they truly are one of a kind.
I said this to myself over and over again while doing some mindfulness meditation before work.
Mindfulness meditation has helped me substantially as I have adopted the practice over the past year. The goal is to be in the present moment. This is a challenge for me having HSAM, which makes me want to go to the past. But also living with anxiety which stems from my fears about the future. It helps me to repeat the date over and over again in order to remind myself to stay in the present.
Today’s meditation was themed with the idea that your thoughts are like cars on a highway. A metaphor that was a little untimely considering I was in an accident three years ago on this very day. But I found the metaphor useful nonetheless.
The meditation went like this: You are sitting on the side of a highway while cars are passing by. These cars are your thoughts. The narrator challenges to not chase the cars.
“Don’t try to jump in front of a car and stop it,” he says.
Don’t flag down a car and get inside of it, just watch the cars as they pass by without engaging with them to create a non-judgmental and present awareness.
For me, many of these thoughts or “cars” are personal memories. I see the cars fly by on the highway with “June 26th, 2007” painted on the side door or “August 25th, 2014”.
I have tried so many times to chase the cars to get in them and fall into the memory. I have also tried to jump in front of the car, stop the memory and shout, “no, no, I don’t even want to see you. I wish you would have never even happened!” But sadly there is no “memory junk yard” I can send those dates to like a would an old car I wanted to get rid of– they will always be on the road.
I have been trying to learn how to just watch the cars as the meditation instructs me to do instead of jumping in one of the vehicles and escaping to another time. This is a coping strategy I have used too often instead of dealing with the present.
It’s February 5th, 2020 and I have made it to work.
Minutes before I grab my computer and my coffee tumbler to walk into our weekly staff meeting my phone lights up with a message:
“So, I was looking through my Facebook memories, and a picture came up from the Superbowl Party we went to… Anyways, it led me to your blog site and some videos about you and your HSAM. I remember you talking about your memory while we were dating, and I must apologize for never taking it seriously….”
Even having HSAM, it is interesting how things from your past can become further and further away, so much so that at one point a person’s name can remind you of one image, one place, one feeling.
Do you all have this too?
With Luke, the first thing I see when I think of him is not the 2014 Superbowl he was referencing in that text message, but rather the blue and white plastic rosary he had hanging on the rear-view mirror of his car when we were dating all those years ago.
“Why do you have a rosary in your car?” I asked him on one of our first dates back in the summer of 2013 as we drove down Highway 41 in between Green Bay and Appleton.
Although I was in college at the time we were dating, Luke lived back up in northern Wisconsin, so the geography of our relationship spread across Green Bay, Milwaukee, and many times even the Chicago metro area for a weekend trip.
“Well not only can I pray the rosary on my way to work or whenever I am driving, but it keeps me safe,” he answered.
I don’t know if I ever pictured myself praying the rosary while in my car at the time, but I did like the idea of safety, almost like a reminder of a guardian angel or something.
Instead of a rosary, I had the tassel from my high school graduation hanging on the rear-view mirror of my car. That’s a good metaphor for mine and Luke’s relationship.
Luke: the devout Catholic who made the Church every part of his life from his car decor to his Facebook profile picture.
Me: the casual Catholic who consistently strolled in late to 11 AM Mass and preferred the feeling of the tassels in between her fingers when she wanted something to fidget with at a stop light.
I’ll admit, seeing this text message from Luke six years later made me almost drop my coffee on the floor of my office. It wasn’t just hearing from Luke out of literally nowhere, but also the content of his message. I never in a million years dreamed of an apology from him for not taking the time and energy to understand my HSAM.
“I remember you telling me about it,” I read over again.
I didn’t even know what the term was for my memory back when we were dating. I took Dr. Nielsen’s learning and memory class the fall after we broke up.
But I knew exactly which conversation he was talking about.
It was Christmas of 2013. Luke and I laid next to each other in his bed side by side. Both of us staring straight up at the ceiling as the snow fell gently outside through the window, almost as it were a dream.
But this had been the Christmas straight out of a nightmare.
Every word that came out of each other’s mouth was said too harshly and taken the wrong way, making the other person feel uncomfortable and unloved. I will take my share responsibility for this, as I hope Luke would too in hindsight. We were both walking on pins and needles the whole evening, and we were waiting to burst open until we were alone.
Luke’s family had all gone home. Everyone went home except for me because it was snowing too hard to make it all the way back to my parent’s house 40 minutes down Highway 41 by myself.
In contrast to all the noise during the family gathering of laughter, conversations, two Christmas movies going at the same time, and the clanking sound of forks as thirty people scarfed down pumpkin pie, the silence was kind of nice. But it was more so awkward because neither of us were proud of the way we behaved towards each other that day.
Luke was the first to break the silence, but his question threw me for a loop.
“What do you think about?” he asked.
I asked him for clarification. I wasn’t sure what he meant.
“Like every day when you’re at school walking to class or something. When your mind isn’t focused, what do you think about?”
There was a long silence.
“Your life?” he asked.
“Yeah, it all plays like a movie in my head.”
He looked away from the ceiling and into my eyes, communicating he wanted to know more.
“My past and everything from it just plays over and over. Not in any order through. One minute it’s a scene from high school the next is a figure skating competition. But even though it’s not in order, it all makes sense. I connect it like a story. And the story adds context to whatever I am going through in the present.”
More silence ensued.
“Selfish,” he muttered.
“What?” I asked turning more towards him.
“That’s selfish. All you are thinking about is yourself.”
I didn’t know how to respond, so more quietness filled the room.
Maybe my way of thinking was selfish? I was thinking about myself, but it wasn’t like other people weren’t included either. Or that I didn’t use my way of thinking to connect with or help others. I often thought about how other people felt and what I had seen them like or dislike in the past in order to use that information in the present.
“What do you think about?” I asked.
“Oh,” I started, “I mean, I think about God too. How He has worked throughout my life as I watch the movie in my head.”
“No. It’s not like that with me. I think constantly every day about what God wants me to do. What will make Him happy. I constantly question if what I am doing is a sin or not because that is what you are supposed to be thinking about as a Catholic.”
I knew how he thought, it was similar to how I used to think before I was treated for OCD, and I wanted no part of it.
“Do you actually pray?” I asked, “Or do you just obsess over sinning?”
At this, he started crying. “I try. I try to pray. That’s why I have the rosary hanging from the rear-view mirror of my car. That is why I am late to work every morning, I take time to try to pray. I want to pray more. But all I can do is judge.”
As you are probably already thinking, I should have walked away from this relationship pretty soon after this conversation. But the hard and fast truth is that I didn’t. Personally, when things went south between Luke and I, instead of mustering the courage to initiate a breakup, I dove back to a time in the past when things were good and relived it. In some ways I tricked myself, and I think I wanted to.
I would relive the past so deeply that it became real again. The mental 2D movie became virtual reality, an escape. But this Christmas instead of going back by myself, I saw a car flying down the highway in my mind, stopped it, got into it, and pulled Luke in with me.
“It’s September 28th and we are back in Chicago,” I started out loud still laying next to each other in bed, “Well we technically arrived in Chicago on the 28th for the Blackhawks game, but by the time this conversation happened it was past midnight and already the 29th.”
I looked over at Luke, and I could tell by his face he was accepting my invitation into the memory, so I continued to take him with me to somewhere only we knew.
“We’re walking down the streets in your dad’s childhood neighborhood. We’re fighting,” I almost said “as always” but I didn’t have to, we both knew arguments consumed most of the communication in our relationship.
“I took your hand and we stopped on a stoop of an old building that was closed for the night. And we prayed. You prayed in your way first, and then I prayed in my way. You know I don’t pray like a Catholic,” I laughed, using humor to tear through the wall we had built between each other.
“So on that stoop because we couldn’t talk directly to each other, I talked to God instead. But out loud so you could hear. And you talked to him too, but you used His words. Both ways we prayed were beautiful, but they are just useful in different moments. I am thankful we pray and think different because if we didn’t think differently, we would have never gotten to this next part,” I turned over to him and smiled.
Tears were rolling down Luke’s face in real time. “How could I forget about this?” he whispered to himself. “It wasn’t that long ago, and I already forgot and let myself get so mad at you. And over what?”
“Want me to keep going?” I asked.
I got a nod and dove back into the memory.
There Luke and I were, together, walking down a dimly lit neighborhood street on Chicago’s west side. He had said he wanted to show me something. Suddenly we were standing in front of an older house where he stopped and just gazed at it the midst of a deep fog that seemed to engulf the night.
“This is the house my dad grew up in,” he told me, “I don’t know why, but I really wanted to bring you here.”
At the end of his sentence, as if on cue, the sky broke and it began to pour down rain. It was the kind of rain that pierced through the layers of the atmosphere, landing so sharp it had to have fallen directly parallel to the cloud it came from. Before we knew it, the rain was pouring down so hard we could barely see one another. But even though his face was made blurry by the thousands of raindrops, I could still see he wanted to say something. And I knew exactly what it was.
“I love you,” he said for the first time.
“I’ve wanted to tell you for a long time…” he continued. I could tell he was going to keep talking out of nervousness.
But before he was forced to continue nervously muttering, I leaped through the curtain of rain between us, flung my arms around him and said, “Luke, I’ve loved you for a long time. I’ve loved you, and I love you now. So much!”
I remember you talking about your memory while we were dating, and I must apologize for never taking it seriously.
I read the text message on my phone again as our staff meeting began. We always start our staff meetings off with “highs and lows”. Everyone goes around the room and we check in with each other. Work related or personal, everyone shares their best and worst parts of the week.
High: I meditated this morning. I’m in the present. It’s February 5th, 2020. And I’m alive.
Low: one of my ex-boyfriends just texted me saying he read my blog, weird right?
But another high: he apologized for dismissing the way I thought and remembered things.
Low: I was going to write about our relationship in my next blog post, but now I feel like I am being watched.
I said none of this to my co-workers. Instead I said some crap about the weather and a yoga class.
After our staff meeting, I proceeded to go on my lunch break. When I got out to the parking deck and hopped into my car the first thing I noticed was my blue and white rosary hanging from my rear-view mirror. I reached for it and touched the beads, drew my hand down to the white crucifix at the bottom and held it to face me.
Back in 2013, Luke and I had gone into the mall together to look around at all the things that were going to go on sale for Christmas. I saw a pair of knock-off, Ugg boots and went over to try them on.
“What do you think?” I asked Luke, turning my hip to him and lifting up the heel of my foot.
“Honestly, I think those boots are ugly.”
“Wow, a simple ‘I think you could do better’ would have sufficed,” I said, irritated.
“Just saying I don’t like them…”
Silence followed as I narrowed my gaze. I could feel myself shutting down.
“Why do you want them anyway?” he asked.
“They’re nice to wear in the winter with a sweater and some leggings. A nice cozy outfit to hangout in.” I replied as I pictured myself wearing them while sipping a nice warm cup of hot chocolate under a warm blanket amidst the harsh, Wisconsin winters.
“Leggings?” he began, “Do you know what boys see when they see girls wear leggings? They picture you naked and they picture themselves having sex with you. I don’t want you wearing leggings…and I still think those boots are ugly.”
I looked around to see if anyone was in earshot. I was mortally embarrassed.
We walked out of the store as I carried a large Macy’s bag cradling a shoe box. I bought the boots in protest. In my other hand, I had a bag with a dress Luke had picked out for me and bought me earlier that night, one he deemed suitable for me to wear to Mass. He thought the dresses I was wearing to Mass currently were too short and didn’t cover my arms enough, but he said this one would do just fine and insisted we get it.
Driving in the car we were silent. We had been silent since I handed the cashier in the shoe department my debit card to buy the boots.
This time I broke the silence.
“Why do you care so much about what I wear?”
“Because short dresses and leggings will make you look like a slut, okay? And you’re not a slut. But people will think you’re a slut if you wear that stuff, especially if you wear that stuff to Mass. All you will be doing is distracting men who are just trying to pray.”
“What the hell are you talking about?” I protested, “You do that you know? You say stuff that’s really…”
Before I could finish my sentence Luke raised the tone of the conversation yelling, “I can never do anything right!”
He let out a scream of anger, nothing like I had heard from him before. Engulfed in rage, he grabbed the rosary hanging on his reviewer mirror, yanking it so hard he manged to rip the entire mirror off of the ceiling as the car swerved. The beads from the blue and white plastic rosary flew everywhere, one hitting my cheek sharply, and others bouncing off various parts of the dashboard.
I was so startled that I had screamed and naturally curled into a little ball.
Luke pulled the car over and saw me cowering in the corner of the passenger’s seat. He looked down at his hands, holding his detached reviewer mirror and the remains of the rosary and became still.
I, on the other hand, remained terrified and the silence only made it worse.
I dove for the handle on the car door, “Let me out! Let me out!” I screamed. “Help! Someone help!” Although I knew no one could hear me, the words just came out anyway.
As I started to yank on the door, the automatic lock clicked shut. I froze, a sinking feeling of fear spread down my body, through my fingertips making my knees buckle. Once I was able to move a little, I slowly turned towards Luke only to see him sobbing. A completely different person than I was in the car with only thirty seconds ago was sitting in the driver’s seat.
I watched him cry for a moment, until he slowly looked up at me and said softly, “Don’t leave me,” tears still running down the sides of his face.
At nineteen-years-old, I thought the problem was Luke having trouble gaining control over his anger when things were heated between us. At 25-years-old, I am now aware that the root of the problem wasn’t his anger management, but instead was the fact he couldn’t let go of having control over me: what I said, what I did, what I wore and most importantly what I thought and believed.
At nineteen-years-old buying me some flowers at Walmart and handing them to me through the frozen car window as an apology was enough for me I guess, enough for me to stay.
I’ll never forget the next morning, my mom and I found each other in the living room. My dad was still asleep. We both looked at the flowers I had put in a vase, and then our eyes locked.
“You know,” she began, “flowers can’t always fix everything.”
In that moment, I didn’t think to open up to her. I didn’t think to tell her what happened, to ask for help. I was embarrassed at the way I was treated, at the way I let Luke treat me.
So instead of turning to my mom and open up to be vulnerable with her all I could do was hide behind my shame and think:
How did she know? How did she know those flowers weren’t just to tell me he loved me? How did she know they were remorse roses?
I couldn’t look at a rosary for months. But now six years later, I have one hanging on my rear-view mirror, just like Luke did. And you’re probably wondering why:
Luke always wanted me to pray the rosary with him, but I declined every time. I made up some excuse because I didn’t have the strength to tell him when I looked at it all I could see was his face full of rage and the beads flying everywhere in his car.
It was not until that March when I opened up a little black chest in my father’s nightstand and saw a box full of rosaries that I reconsidered their symbolism in my life. My mom and I were going through my dad’s things the night before his funeral.
“Why?” I began in shock as I opened the box, “Why did he have so many rosaries? I don’t know if I ever saw him pray one.”
“He used to make them,” my mom told me, “and sell them when he was growing up. Your dad was a very spiritual man, you know.” she continued after a long pause, “You may have not seen him pray, but he always cared about God.”
My dad’s death, as horrible as it was, did help me open up to my faith more. Although I was still dating Luke, I had an experience he had not had now: losing a parent. And although he had always claimed the authority on everything religious, I felt that this experience with grief allowed me to explore my faith in different ways than I could before. And in ways Luke still could not.
For the first time in a long time I felt like I had a part of my faith that was my own not to be destroyed from an overly conservative Catholic argument Luke would wave in front of my face, making me think I was stupid-that I knew nothing about my own religion.
I actually started to pray rosaries, but not because anyone was forcing me to. Because I wanted to. I found myself staying in the present as I prayed them, a lot like meditating. I also found myself connecting to my dad as I prayed them, like I used to be able to do with a simple text or phone call.
“You just know so much about Catholicism,” two of my friends I met a few years later in graduate school both said to me.
Both Katie, my roommate, and Ree my neighbor who were both in my master’s program had said this to me on different occasions. I just brushed it off as it being the effect of me growing up Catholic, an experience neither of them had unlike the people I had been surrounded by my entire life until I moved to Southern Indiana.
At the time, I didn’t tell Ree or Katie my knowledge on the Catholic Church probably came from the hours of listening to talks by Fulton Sheen in the car with Luke as we drove up and down the coast of Lake Michigan to the many locations of our relationship. The only reason I was listening being I had grown tired of fighting over what we played to the radio, me wanting to listen to music and Luke wanting to listen to a talk on Relevant Radio.
I didn’t tell them that I constantly educated myself on Catholicism for a long time not because I was in love with the faith, but out of fear of having it used against me by someone who knew more than I did. And I still don’t know if I didn’t tell them this because I was afraid to admit it or if I was and still am trying to wrap my mind around exactly what happened with Luke.
It was a challenge to look back conceptualize all the times I was forced to go to Confession (something that I used to enjoy doing) because in Luke’s opinion, I had tempted him or we had done something bad.
“If I don’t take us to confession right now, we are both going to Hell,” he would say.
So there we would be ditching the plans we had made to drive to the nearest church whether it was in Chicago or Milwaukee and tell a complete stranger about how I had tempted my boyfriend.
After this relationship ended I decided I would never again let someone use my own beliefs to humiliate and abuse me. I learned everything I could about Catholicism, at first out of fear. As I began healing from the pain of my relationship with Luke, I started to fall out of love with him and in love with my faith, genuinely in love with it. Maybe what they say is right? Maybe fear is the heart of love after all.
Luke always told me he was my protector.
He took on this role especially after my father passed away during our relationship. To his defense, I cannot even count how many times Luke was there for my mom and I during this very difficult period in our lives, and it wouldn’t be fair to discount all that he did. Knowing this may even help you understand more why I stayed for as long as I did. Toxic relationships are not all sunshine and roses, obviously, but they are not all bad either.
And when things got bad, I would do exactly what I told you– jump in my little memory car and get away. But no matter how many times I used my HSAM to escape to the past, what was happening in the present was taking a toll on me and sculpting my view of the world.
From the beginning of our relationship a world was painted for me in which men were trying to hurt me. Around every corner, all they wanted was sex and I was their vehicle of choice. At the time, I was especially vulnerable to buying into to this narrative because only a few months before I met Luke I had been sexually assaulted.
It wasn’t until September 17th, 2014 that I reported the assault, only a few weeks after Luke and I started to end the relationship (it was a process).
My best friend, Allison, and her boyfriend, Chris, were sitting with me in the Marquette University Police Station as I reported being sexually assaulted almost two years ago in my freshman dorm room. My assailant had contacted me that morning. Describing the assault and asking if “I missed what he did?” and “If I’d ever want it to happen again?”
“I am sorry I have to ask you this,” the female police officer said as she looked at me, letting out a deep sigh.
I looked over at Allison and Chris, afraid of what she was about to ask.
“…but what were you wearing?”
“What do you mean?” I asked.
“What were you wearing the night Brock assaulted you?” she repeated.
I remembered exactly what I was wearing. I was wearing a red top with a butterfly painted on the bottom left corner of it that my Aunt Dee Dee bought me when I started high school. The antennas had rhinestones the followed their swirly curves.
And I was wearing a pair of black leggings.
I looked up at the officer afraid that the answer, the true answer to the question of “What was I wearing?” would be the wrong one. I was afraid it would make the assault my fault.
I knew what I was wearing that night. I knew what I had worn every day since 2005. And on March 22nd, 2013, I was wearing leggings. Even though I was told numerous times not to by my parents, teachers, and later on by Luke. Leggings made my butt look too big. Boys couldn’t control themselves when girls wore them. Leggings aren’t pants. I’ve heard it all. But the narrative spelled out by Luke rang the loudest:
Leggings? Do you know what boys see when they see girls wear leggings? They picture you naked and they picture themselves having sex with you.
I could hear him saying this as if I were back in the Macy’s shoe section all over again.
“Jeans.” I told the police officer. “I was wearing a red shirt and jeans.”
I learned that relationship abuse can take on multiple forms. It isn’t always sexual, it isn’t always verbal, but instead there are multiple kinds of ways people manipulate each other in relationships. Toxicity can spread between the two of you, and both people over time can start behaving irrationally and be hurtful towards the other person. The narrative I had built about Luke in my head while we were dating, him being my protector and one of few moral men left in our world, was shattered like a hammer to mirror months after our breakup when we got together to catch up.
I had actually just gotten off the phone with UC Irvine doing my second set of tests for HSAM, the 10 Dates Quiz. Because I had gone into so much detail, I found myself running late to meet Luke at one of our favorite coffee shops we used to frequent when we were dating.
We were outside of my car, and I dropped my keys on the ground as I was getting them out to unlock the door. That’s when I felt his hand on me. A tight and aggressive squeeze followed by the words, “You still have a nice ass.”
Luke was no different than Brock. He did things Brock never did, good and supportive things. But the reality was that an underlying entitlement to my body existed that hit me like a brick in that parking lot.
Yet driving back to Green Bay from Appleton that evening, I still felt a force, something in my brain, wanting me to turn around and go to Luke, tell him I would throw it all away—college, graduate school, everything for him. That’s what our biggest fights were always about: my career. It was clear he would have preferred I not had one at all. But even though now I have a career and my master’s degrees, what still scares me today is that the brainwashed part of my mind lives on somewhere inside of me.
And that’s when the HSAM cars become helpful. When I am going back to bad places, I can stop a memory in its route, jump in and go for a ride to somewhere else that fosters my strong and confident sense of self instead of the weak and submissive one that was fostered through toxicity and abuse.
When being interviewed about HSAM, I never fail to get the questions, “But what about the hard times? It must be so difficult to relive things so painful?”
Let’s be honest, its painful for everyoneto relive bad times in their lives. And I am no exception on either end of the spectrum. But what does maybe make me unique is using my vivid and accessible memories as an escape. Lately, however, I have been trying to re-frame this method by embracing bad memories for what they are and using them to find my strength.
This brings me to February 5th, 2017.
My mom was visiting me while I was in graduate school at Indiana University. We had just watched the Super Bowl at one of my favorite restaurants in town, The Tap.
I dropped her off at her hotel and headed back to my apartment on the other side of town. As I drove, I looked at the newest addition to my car, a blue and white beaded rosary hanging from my rear-view mirror.
Although I had grown to love the rosary after my dad died, I could never come to put one in my car since the incident with Luke– until now. Someone at church handed me a plastic rosary as I was walking out of Mass the week before, and I just had a sense to put it in my car, despite the bad association.
As I drove back to my apartment that night down a dark, country road, suddenly bright head lights flooded my view. Before I could serve or even think for that matter, a car going the opposite direction slammed into my vehicle head on.
I had never heard the sound of things breaking so loud before. Smoke went everywhere, the air bags inflated, and debris flew at every part of my body. All I can really remember during the actual hit itself is screaming as the car spun around and around down the road. I had never felt a sense of something being so out of my control. I closed my eyes as I screamed but that only seemed to make the spinning worse, so I opened them and focused on one thing: the rosary.
It turned out I had been hit by a drunk driver. A drunk driver who fled the scene on foot and ran through the forests of Bloomington, Indiana leaving me alone in the middle of 3rd Street.
But the part of the story that still shocks me the most is the moment when the car finally stood still after spinning out of control.
This was the moment I fully realized I was still alive despite telling myself only seconds ago, “This could be it. Pray. Pray Pray.” I remember feeling my legs, then my arms and my head. This was the moment I realized I wasn’t alone, and I never had been. My dad would never leave me, and despite everything neither would God.
I grabbed the rosary hanging from the mirror and stepped out of the totaled car.
The number one question I can always count on being asked, specifically, in a TV interview about HSAM, whether it’s a local news segment or 60 Minutes, is:
“What is your dating life like?”
It’s always towards the middle of the interview. The person interviewing me will pause and say “so…I have to ask…”, and I know exactly what they are about to ask me.
Sometimes I think journalists just want to know if I am seeing someone, and other times I think it’s because they want me to have this dramatic, long-lost love story enhanced with nostalgia.
Or maybe they think the fights I would get in with significant others would be rather interesting? Like I would just be throwing dates at the guy like ammunition trying to prove a point.
But before I go on answering this popular question, I am going to spill some tea: I think I get asked about my dating life because I am a woman.
There I said it.
I think the first thing that comes to a journalist’s mind when they see a 25-year-old, blonde girl is asking about her dating life, just like my Great Aunt does every Thanksgiving. So forget all the rare, super memory ability stuff because apparently my relationship status is where my value actually lies. I’d just love to know how many men with HSAM get asked about their dating lives on TV and are told by producers to include pictures of their ex’s when asked to provide personal photos for the segment. Just saying.
Side note: Last year at Thanksgiving my Great Aunt didn’t just ask if I had a boyfriend, oh no, she had the audacity (that one has at 100-years-old, literally) to directly ask me when my single-self planned on getting married. To which I cynically responded, “Eat your vegetables, it’s going to be a few years.”
Anyway, maybe there is something to be said about navigating dating while having HSAM, regardless of gender identity. Honestly, I don’t know what it’s like to date without HSAM, so I am not 100% sure what the differences would be.
Keeping in mind what I outlined above, I will take some time to share a bit about my dating life with you to see if there is a difference.
It did occur to me in order to gain some perspective, I could ask the guys I have dated in the past if it is different dating someone with HSAM? But, I would rather not do that.
So here is what I am going to do, and I promise it will be just as entertaining:
Back when I was an undergraduate student at Marquette, I wrote an article called “The Seven Guys You Will Date in College”. I was living on campus over the summer of 2015 as a scholar for the McNair Program. I had just finished writing a 40-page research paper, and I had this desperate need to write something that didn’t involve data—something for fun.
So on a Thursday night at a Starbucks in downtown Milwaukee, my first Buzzfeed-style article was born. I am going to share this article with you for the following two reasons:
I did not write this article from the lens of having HSAM, but rather form the lens of being an average, 21-year-old college student. I wrote this article to be relatable. I think this is a fantastic way to answer the journalists most popular question, “Is dating different with HSAM?” because this is a first-hand look at my perspective on dating while not really thinking about HSAM. So if there are differences you spot they won’t be over-dramatized.
A lot happened in my life during college, to say the least. I found out I was one of 60 people in the world with a memory ability, I lost my dad, my family lived below the poverty line for awhile, I figured out what I wanted to do with my life, and most of all, I got to know myself. I realize some of the things on that list are kind of heavy, but this article gives a really fun and light perspective on my college years. Therefore, before we dive into some of these heavier topics in future blog posts, I would like to give you all some humor fresh out of 2015.
So you tell me, is dating with HSAM different than dating without? Read this, reminisce on your college years and let me know.
THE SEVEN GUYS YOU WILL DATE IN COLLEGE
Written July 16th, 2015; Updated August 6th, 2016
By: Markie Pasternak, Age 21
I know not everyone decides to enter the dating world in college, but for those of us who leapt right onto the playing field and rode the roller coaster that was “college dating”, we probably share some common experiences.
Last summer (2015), I was working with a graduate student in a memory research lab who told me some comforting words after I had a little dispute with the guy I was dating at the time, who you will come to know as “The Younger Guy”.
I told my graduate advisor I wanted to call him and break up because I didn’t see the point in dating, but mostly I was embarrassed about a mistake I had made. She stopped me and said, “In college you are supposed to date and mess up. It is fun to mess up sometimes. Don’t worry about finding the perfect guy yet, that’s not what everyone’s early 20’s are about.”
So with this advice, I put down the phone and decided to focus less on perfectionism and more on finding out more about myself through new experiences.
Your story may be similar to mine, or it may not be. You may have dated three of the people I am about to list or all of them, but in a different order. So without further ado, coming from my personal experience and that of many other friends and relationships observed, here are the seven guys you will date in college:
1. Orientation Guy
This is the guy you sat next to at the “Welcome to College” seminar on the first day or awkwardly ate dinner with in the dining hall because your roommate, whom you depended on being friends with, somehow already found her squad in the first five hours on campus. This is Orientation Guy.
Orientation is a very interesting time in college, specifically for the reason that everybody is friendly. Everyone wants to know everyone else’s name, major, and hometown. But you got on another level with Orientation Guy, like I’m talking he asked you your favorite color and if you have any pets.
You have heard about the love stories that started the first week of college. And you are thinking, “Hey, that’s going to be me!”
So maybe when you called home for the first time and told your parents you already had your first date they kind of freaked out because you haven’t even had your first class yet…But this is totally meant to be, so who cares?
You and Orientation Guy date for a few weeks, maybe months (that was me). Or maybe you only made it through Welcome Week, but either way the two of you figure out the ins and outs of college together. Then suddenly you both start making new friends you didn’t meet on one of the Welcome Week excursions and realize there is this thing called “homework” that you’re not doing so hot at.
If your love story stayed steady from here and you are still with Orientation Guy, good for you! But most of us did not meet our future husband at the freshman orientation square dance (Yes, Marquette has one of those). We continued our college dating journey.
2. Rebound Guy
You are pretty distraught about Orientation Guy. You already asked your roommate to be your maid of honor and reserved the campus church five years in advanced (that was a joke—please tell me you didn’t actually do that).
You need to forget about him. But how do you do that? Well your solution as a freshman is to find a new guy, and luckily for you there are plenty of them on campus. This is how you end up with Rebound Guy.
You know each other through some mutual friends and really hit it off sitting next to each other in the stands at a basketball game. Then the next day you “happen” to see him at the dining hall and catch dinner with him. You will be honest, he is not as good looking as Orientation Guy, but he has some fine qualities.
You guys start dating—and fast. It takes all of two weeks for you guys to make it Facebook Official (because that was still a thing in 2013). Then one day you woke up and realized you’ve met his whole family, including grandma. This is going way too fast for you and you are not even that interested.
You also realize there is a reason he is a rebound—he is not as good as the guys you have dated or could be dating. You can do better. You move on. I would say if you end up with this guy, good for you, but you don’t. No one stays with Rebound Guy.
3. The Frat Bro
The guy you sit next to in your Spanish class says one of his frat buddies is looking for a date to their spring formal. Prom was a great time in high school, so college prom must be even better, right? This is how you meet the Frat Bro.
Since you blindly agreed to be this guy’s formal date, he takes you out for a burger at the trademark, on-campus restaurant. First of all, it is very apparent he is not just a guy, he’s a Bro. Second of all, the whole date you are sitting there, staring at him wondering one thing:
“What is his real name?”
The name he introduced himself by is obviously a nickname his frat brothers gave him. Would anyone really name their kid “Zippy?”
Finally he casually mentions his real name is Peter and you feel relieved, like you know him better and its actually a real date. That is until one of his professors sees him from across the restaurant, walks up to your table and says “Hi Donald, it’s nice to see you.”
Donald? Who is DONALD? He said his name was Peter! Who the heck is this guy?!
You don’t know, but you do know one thing—you’ve got to get out of there.
Well it turns out Frat Bro’s real name is Donald, but he prefers to go by Peter, which is his middle name, and his frat brothers call him “Zippy”. And after that is all clarified you somehow decide to still be his formal date.
Unbeknownst to you, this gig actually comes with a lot of perks. Suddenly your name is on the list for all these different parties, the frat brothers start considering you a “Bro” and invite you to brother events like cookouts and video game nights filled with Mario Kart and Super Smash Bros—your favorites. And the best part is you barely even have to talk to Frat Bro/Zippy/Peter/Donald.
This is fun and all, but you get to the formal dance and realize this guy isn’t for you, something you knew deep down the whole time.
For those of you who ended up with the Frat Bro—good for you! You probably went to a lot more cooler parties than I did over the years. But at that formal, some of us were hiding our phones under the table texting someone else who liked to talk about things other than booze and organizations made up of random letters from the Greek alphabet we couldn’t understand, someone new: The Older Guy.
4. The Older Guy
So you are still an underclassman, but a senior boy has caught your eye. He is everything you have ever dreamed of. He is over the hook ups, knows where he is going in life, but still knows how to have a good time.
You admire him from afar. You are like two or three years younger, there is no way he would go for you. But you are perfectly content as long as you get to stop and stare once and awhile from across the library or campus coffee shop.
After a few weeks, you are seriously crushing on this guy. Like we are talking the “you feel like you are back in middle school” kind of crush. But you can’t act like that. He is older. There is no way you are going to get an older guy if you act even younger than you are.
Then one of his friends who works at the front desk of your dorm tells you Older Guy wants to ask you out. You are so over taken with happiness that you are rolling on the floor of the lobby and your residence hall Priest comes downstairs to make sure you’re alright (okay, maybe that was just me), but you are excited at the very least.
Older Guy asks you out on an official date, and this is your first date somewhere fancier than the “good” campus dining hall besides the burger with Frat Bro. Either Older Guy or one of his buddies has a car, so you can actually go off campus without having the entire Public Bus System third wheeling on your date.
Then the bomb drops—he is graduating. He is graduating soon. You think, “Why can’t we make it work long distance?” But when this guy is going to some far off land, like the University of Wisconsin Madison for graduate school, a whole hour away, staying together seems impossible, for most of us that is.
If you ended up with the Older Guy, good for you! But as for me, I got my little, freshman heart broken. To this day, its okay if you still creep on his Facebook page to see if graduate school was really as amazing as he thought it would be (and if he is still single).
5. The Guy from Your Hometown
You may deny that this one happened, but let’s all be honest— it happened.
You were home for the summer or over Christmas break, got together with some people, and the story of The Guy from Your Hometown began. I have seen this go down all of these three ways:
1. You met a guy from your hometown and fell for him.
2. You reconnected with a guy from your high school and hit it off.
3. You got back together with a high school ex.
I listed these in a certain order for a reason: severity. Luckily for me I was only a level one, I got set up with a guy from my hometown and we dated for almost a year. I have seen the other two scenarios and if they work out it’s cute, but some of the relationships I observed had some tragic endings.
You like this guy because he is similar to you. You guys have memories together from before you had to grow up and be adults. Or at least you grew up in a similar place, so it is easy to connect. He may have been your first love, or maybe he was your prom date, or the guy you never noticed in high school? Whatever the situation, you think it’s movie material. You were separated for a year or two and now you are together either as what you were before or more than what you were in high school.
If you stay here and are still dating The Guy from Your Hometown, good for you! But otherwise here is what happened to me…
You wake up one day and realize you haven’t been on campus for one weekend in the past two months or if you have you’ve been spending it with your boyfriend because from Monday to Friday you are dying to see him. Then you realize how different you are from the person you were in high school and that you want to date someone you have a future with not a past with.
Telling people it didn’t work out kind of stinks because you have to tell everyone on campus and back home, but hey at least you can go on living your college life.
Also around this time expect to receive an awkward Facebook message or text from Rebound Guy. He saw that you are single, he thinks it’s his turn again, but you know better. You are too mature for rebounds now.
6. The Guy YOU Chased After
This is the guy that you saw from across your class or the campus bar and thought “I am going to make you mine.” Yeah…this can only go well…. This is The Guy YOU Chased After.
So you walked up to him and struck up a conversation, asked for his number, and told him to hit you up some time. It has been a week and he hasn’t contacted you.
You decide to take the lead on this one and go after what you want. You ask him to go to dinner or a movie and he says “Yes!” Wait is this a date? Your friends say it’s a date. You think it’s a date. But does he think it’s a date? Or are you just hanging out?
Wait! You know how to tell… You can see if he ends up paying, then you know if it is an official date.
You are at the movies, nervous to find out if he will look at you and say, “Oh I got it” when the person at the box office says the ticket price. But then you realize… the movies at the campus theater are free for students now. Thanks Student Government for your new “movie initiative.”
So this just backfired, and you still don’t know if this is a date. He doesn’t kiss you at the end of the night, so you think “maybe next time?” You keep calling and texting him to hangout maybe once a week, and he keeps responding…at first. But slowly he starts to not respond, and finally he doesn’t bother at all. Girl, take the hint! He is clearly not interested.
Now if this is where you stay and you actually got the guy to fall for you, good for you (I would love to hear how you did that)! But most of us continued on and awkwardly looked away when passing this kid on the way to class until the day we graduated. But every time we still wanted to turn around and yell after him, “But for real, was it a date or not?”
7. The Younger Guy
You are an upperclassmen now and perfectly content with being single. Hometown Guy has asked to get back together several times because he is “still in love with you” or whatever, but you like being by yourself. Dating is the farthest thing from your mind between what to do after college and how to spend your precious time left on campus.
Then, from across the room, you made eye contact with each other: The Younger Guy. You start talking, and he asks you what year you are going to be in the fall. When you reply “senior” and he responds with “junior” the warning alarms start going off in your head and your little, cartoon Lizzie McGuire starts screaming “RUN AWAY!”
But he ends up Facebook creeping on you (because the younger kids are really good with technology), finds your profiles and strikes up yet another conversation.
All of a sudden you are on a date with this little cutie and are starting to realize this guy is from a completely different generation than you. His fondest childhood memories include Webkinz, while your’s include Beanie Babies. And beyond that you are the one actually showing him the ropes of dating…
Wait a minute… you have turned into The Older Girl. And your friends won’t let you forget it, especially because on top of being younger he is an inch shorter than you.
But, nonetheless, you two have a lot of fun together. You go on adventure after adventure and live out every date, study session and party. This guy makes you forget you are senior and helps you to live in the moment and enjoy college as if you were in the middle of it all again. And you almost forgot he was a year younger.
Well… except… there is one little thing…. You are a senior now (boy, did the time fly!) and the longest you can date this guy, at least while being close geographically, is one year, maybe less. He is honest and says he isn’t ready for a relationship beyond college, and can you blame him? He is The Younger Guy, after all. If you aren’t even sure you are mature enough for a more serious relationship, there is no way he is mature enough either.
So you finish the cycle and are the one who runs off to graduate school like Older Guy did to you.
So… thank you Orientation Guy for giving me a reason to not be so homesick and a partner to explore campus and college life with.
Thank you Rebound Guy for teaching me that rebounds don’t work, you have to find the strength to move on by yourself.
Thank you Frat Guy for showing me the side of college I couldn’t financially afford.
Thank you Older Guy for showing me the kind of person I want to be with one day when I am ready.
Thank you Hometown Guy for reminding me that where I came from is important no matter where I go in life and will always be a part of who I am.
Thank you Guy I Chased After for showing me that I really want something, I actually do have the courage to go after it.
And thank you Younger Guy for helping me live in the present my final year of college and enjoy every moment of being a student—because it was truly a great four years.
This anonymous article I wrote was passed around Marquette email accounts my entire senior year. When I wasn’t feeling too shy, I read it out loud to friends in coffee shops, as a break during late nights at the library, on road trips, and what I found is that people could relate to a lot of these experiences. As I read this article to different people, I could see them counting the number of people they dated on the list, using their fingers saying, “Yep, I know who my Older Guy was.”
So maybe dating isn’t too different with HSAM after all? I still mistakenly thought Rebound Guy would get me over Orientation Guy and agreed to go to a formal with Frat Bro like a lot of other college students did— I can just remember all the cringe worthy details a little better and tell you what day they happened on.
Here’s another thought: maybe dating is different with any person no matter who they are because we are all unique in our own way? HSAM or no HSAM, we all come with our own abilities, stories, backgrounds, and quirks that create different dynamics in relationships.
The above monologue is a very brief overview of my dating experiences in college. I had so much fun writing it back in undergrad, but sadly, not all of my experiences during this time are appropriate to make light of.
The next few articles I am going to write will be about the other side of the coin: HSAM and trauma. So if you are a survivor of sexual or domestic violence, I want to give you a trigger warning for the upcoming post.
These are some of the gems I told you about in my first article, the ones that aren’t as pretty or easy to look at as others. When I uncover them, there is still a part of me that wants to shove them back in a box and never think about them again. But what I have realized is sometimes the jewels that don’t shine the brightest or present the most raident of colors are the memories we can learn from the most.
I remember the moment I realized my mental illness was a joke.
On August 14th, 2011 I was in Door County, Wisconsin with a group of my high school friends. For those of you who are not familiar with Door County, think of it as the Hampton’s of the upper Midwest. Although I knew a lot of wealthier families who actually owned cabins and second homes up there, my friends and I would frequently just drive up for the day to walk along Lake Michigan and spend a day on the public beaches.
As we strolled along the narrow roads of a quaint, tourist town called Fish Creek, ducking in and out of shops, the three big letters “OCD” caught my eye on one of the giftshop’s shelves.
OCD Handsanitizer the bottle read. It had a white man with gray hair in a lab coat on the front label, almost making it look like a clinical product. Like all I needed to cure myself was an off-brand bottle of Purell.
I knew it was just a dinky souvenir shop, but seeing the disorder that actively made my brain a living hell for ten years just stamped on a gimmick to be someone’s white elephant gift in four months was awfully invalidating. I felt small, almost used in away.
The idea that my mental illness was a joke to most people wasn’t a foregin concept to me, but there was something about physically seeing the punch line in front of my face after being diagnosed that sent a chill down my spine. And I remember one question ringing in my head for the rest of the day: “Did anyone actually care about people like me and whether we got better or not?”
The good news was: they did.
After I posted my last blog article about starting to recover from OCD, two readers reached out with similar requests:
(1)“Could you write an article about how to support someone with OCD?”
(2) “Could you wrote an article about how to support someone with HSAM?”
I am an expert in neither of these areas; however, living with both OCD and HSAM the least I can do is give you my perspective as the person who has needed someone to lean on and confide in.
I remember the first time I felt the shame of stigma surrounding mental health issues like OCD in that gift shop almost ten years ago, and since I have come to realize if mental disorders are constantly seen as a joke, the good people who are able and want to lend a helping hand will not think to because to them it isn’t serious, it isn’t real.
I would like to reiterate here that OCD is a mental health condition, while HSAM is ability. Supporting someone overcoming their OCD is going to be more about advocating for them to get help and supporting them through treatment, while HSAM is more of understanding our unique perspective and accepting how wild of a ride our lives can be having this rare ability.
So if you know someone with HSAM, stick around I will get to you next. But first if you love someone with OCD, here are some ways you may be able to support them:
Don’t Listen to the Stigmas and Stereotypes You Hear About OCD
If I had a nickel for every time someone asked me if I was a “neat freak” or if I clean all the time, I could retire from the workforce at this point, and I’m 25 years old.
Cleaning seems to be one of the only symptoms of OCD people are familiar with. Because it’s easy to spot? Maybe. But do you want to know the real reason I think it is the most talked about symptom? Because I think people perceive cleaning to be the symptom of OCD that is easiest to talk about. A lot of people can talk about someone’s obsessive need to clean their house, food, and body because they also do these activities but to a lesser degree. Cleaning doesn’t come off as harmful in anyway, so its not threatening.
But you know what is uncomfortable to talk about? Hoarding, intrusive thoughts, strange rituals, numbers that appear everywhere, something inside your brain telling you to do something “or else”, the endless need to check and recheck things.
Here is the problem when we restrict OCD to mean just cleaning: those of us who’s OCD does not rely heavily on a cleaning component are dismissed, even told at times we don’t have OCD. And when trying to overcome a mental illness, this can be very invalidating. Especially when trying to comply with treatment and someone says you cannot possibly have OCD because your room is a mess, disregarding its messy because of the hoarding tendencies that are just another less talked about part of your condition.
Even considering the cleaning component of OCD, for many of us it is less about being clean and more about a fear of contamination. I didn’t care if my room was a mess growing up-ask my mom-but I did care about what was in my food, who touched certain things I had to touch, and if I had to touch dirty objects.
My need for cleanliness probably doesn’t look how you thought it did, and if you listen to the stigmas we would never get past talking about hand washing or needing a picture hung on the wall to be perfectly straight and get to the real meat of OCD.
And you might be thinking, “Why does that matter?” Well, if we as a society adopt false information about mental health conditions as common knowledge, those who could refer someone to get care or even some clinicians themselves could overlook someone who needs help for OCD because their case doesn’t fit into the small box we created.
Help Us Destigmatize OCD
You know who has become a champion at this? Donna Pasternak, my mother.
Although in the beginning she struggled with the idea that I had clinical OCD due to the stigma, now she loves to tell me when she has the opportunity to be a stigma fighter and takes it.
“You know what someone said to me yesterday?” she will say to me over the phone, “They asked a woman next to us if she was super “OCD” about how things were arranged, and I turned to him and I said, ‘Excuse me, that is a mental illness. Do not talk about it like its a joke.’”
This always means the world to me, especially since in the beginning my parents knew little about the condition and were not sure how to think about it.
In college I worked in a research lab, in addition to Dr. Nielsen’s memory lab, that studied the stigma of mental illness. The research I helped conduct and read through for this lab made it clear that the stigma, or mark of shame, put on those with mental illnesses was a barrier to treatment for many individuals. People don’t want to be marked as “crazy”, “dangerous”, “psycho”, or any of the other cruel words we associate with mental health issues, so many avoid treatment to avoid the diagnosis and the label.
Had I bought into the stigma surrounding OCD, I would not be as mentally healthy as I am today, and probably even sicker than I was ten years ago.
To me when my mom shows up for me by calling when OCD is used as a joke, it is another way of her telling me she loves me. Telling me that my experience matters to her and she is not willing to dismiss it because it can be an uncomfortable topic. So next time you see OCD used as a joke or a casual way of saying “I like to clean things,” it would me a lot to me and possibly others with OCD if you took a second to educate them on what it really means to live with OCD.
Don’t Assume My OCD Looks Like Someone Else’s
Going off to college, I was determined to be open about living with OCD. I figured it would just be easier to be honest on the front end instead of having rituals around going to class and little pet peeves about my roommate that I felt had to be a secret.
My freshman college roommate was very understanding of my condition, and so were a lot of the other girls on my residence hall floor. However, one of my floormates, Gertrude, who lived across the hall from me wasn’t quite as empathetic. One evening she walked into my room unannounced and gave me her two cents ,“You don’t actually have OCD, Markie. My cousin has OCD and she would never be able to walk barefoot in her room like you are right now,” she said as she looked at my bare feet I had just kicked my shower shoes off of.
Just because I don’t act exactly like someone else with OCD does not mean I do not live with it. That is not how mental illnesses work.
When people adopt the mindset my neighbor across the hall had, we risk not getting those who need help into treatment. What if I would have thought Gertrude was right? Taken her words to heart? I could have stopped treatment, told myself I was overreacting, and then where would I be? Certainly nowhere near as healthy as I am today, that’s for sure.
Although Gertrude’s comments did not defer me from going to therapy or taking medication, they did affect my actions for awhile:
One of my greatest faults is that I am a people pleaser. I have to actively push myself to not try to impress or please others when it isn’t productive or healthy for me because I naturally default to wanting to make people happy and comfortable, even at my own expense.
I have gotten better at this in many contexts, but back in 2012 living in Cobeen Hall as a freshman, I thought to myself, “What if people don’t believe I have OCD because I don’t act like it?” and even further than that, “Why can’t I embody the parts of OCD people actually like, such as being clean? Why am I a messy hoarder instead of polished and particular? Maybe people would like me more if I had the symptoms of OCD they wanted me to have?”
So what did I do being the people pleaser I can be? I tried to be cleaner, but to an obsessive point.
I wanted to be what people thought I should be in a really twisted way. But this got me nowhere, and it took a lot of time to be proud of what situations I could handle in regards to cleanliness and own which ones I could not.
But the thing is, they were my symptoms. Gertrude was not a doctor or my therapist, she had no place weighing in on the matter. So maybe instead of thinking, “I don’t think that person actually has OCD,” maybe take some extra time to educate yourself instead about all the different ways OCD can look.
Ask What is Unique About Our Own Recovery from OCD
If I share with you I live with OCD, it’s not always the most informed to ask things like, “Well what are you obsessed with?”
But a more appropriate question could be, “What does that look like in your everyday life?” That way I, or another person living with OCD, has the space to tell you what the inside of our brain is like and how it affects the way we operate in the world.
I would say something like, “I have trouble getting rid of things, but I work really hard at it. I can’t stand socks, I consider them contaminated, so don’t be asking me to do your laundry anytime soon. Noises like chewing sound and breathing sound ten times louder in my brain than what you hear in your head. I obsessively think about calendars, dates, and past memories. And if I notice something happening repeatedly, it is very tempting for my to turn into a ritual to try to control things I can’t.”
If you ask a friend or loved one of yours with OCD the same question, you may get a completely different answer. And that’s fine, they still live with OCD and will probably appreciate that you asked instead of assuming they just need to wash their hands all the time.
Try Not to Reinforce Our Rituals but Don’ Try to Stop Them if we Aren’t Ready
This is a tricky point that may look different for different people, but I wanted to bring it up anyway.
When I was 13-years-old rituals dominated my life. I had over thirty, yes I said thirty, rituals a day I had to abide by because of my OCD (although at the time I did not know mental illness was the reason for this). These rituals ranged from wearing the same shirt every third Tuesday of the month to only being able to use computers at certain hours of the day.
As an eighth grader, I had to take religious education through our church because I had switched to public school and apparently six years of Catholic school didn’t get me off the hook. A boy in my religion class, Bryce, who I also went to “regular school” with, told me in class one evening, “Markie, I saw your sister at Mass on Sunday. She’s so hot! Can you put in a good word for me?”
“I’m an only child, Bryce,” I replied with a flat expression.
“No you’re not,” he insisted, as if he knew my family structure better than I did, “I saw your sister and your parents at 11:00 AM Mass last weekend.”
“Bryce, that was me. Not my sister.”
The rest of the class started to snicker.
“There’s no way! You weren’t even there. It was just your parents and your sister.”
“I don’t have a sister!”
I share this wonderful middle school memory of Bryce not wanting to admit he thought I was a pious, little smoke-show because he had a point: I did not look the same everywhere I went.
Part of my rituals were having outfits, hairstyles, and even make-up I could only wear certain places. Bryce was used to seeing my school look: straight hair, jeans and a shirt from American Eagle with a sweatshirt from a figure skating competition. Obviously his little eighth-grade heart was not prepared for the unintentional “Hannah Montana” I pulled when his family attended 11:00 AM Mass that Sunday. For the first time he saw “Sunday Church Markie” with perfectly curled hair, a pretty dress, and even some make-up, who apparently looked like an entirely different human being.
Bryce’s story also makes another good point: I looked a lot different on the outside because of things that were going on inside.
And here’s the thing: very good therapy can help people who are struggling with OCD, like I was, be able to stop being a slave to their rituals. Therapists can help us challenge the rules inside of our heads in a safe and clinical space.
Therefore, it is not anyone else’s job to try to disrupt our rituals. By all means urge someone with OCD to get treatment and even challenge their rituals saying something like, “Why can’t you wear that dress to school and only to church?” Because then a broader conversation can be had, especially if the person is not in treatment already. This could be a chance for someone to share what it is like inside their head and you could be the person to refer them to therapy or another place to seek help.
But noticing they are acting differently or illogically and trying to outright stop them from completing their ritual is not your job. If someone tried to force me to wear my church clothes to school, you bet I would have probably just thrown the dress in the trash to get rid of it all together rather than risk breaking a rule.
So I think pointing out the poor rational of rituals is fine and in some cases can be helpful, but it is a professional’s job to change our behavior. So please keep that boundary in mind.
Try to Be Mindful of Our Rituals
Anyone remember the band, The All American Rejects? I got to meet them at the Mall of America in the 7th grade, and I’m still pumped about it. But anyway, I had a ritual with one of their songs when I was in middle school.
Remember how I told you all I had rituals around my friend Jenny who was suicidal? Well looking back to August 13th, 2007, I was on AOL instant messanger with her the first time she told me she was thinking about suicide. I remember not knowing what to make of the words across the screen, and almost coming to tears when she went on telling me about all the ways she had already tried to die.
In the background I had music playing, and it was the song, “It Ends Tonight” by The All American Rejects. After that day, I believed if I listened to that specific song, Jenny would attempt suicide.
Here was the other part of my rule, I couldn’t minimize the risk of myself hearing that song because that would be cheating the ritual. I couldn’t simply take the song off my ITunes library (Gen Z friends: ITunes is like Spotify but you had to actually buy each song) or avoid the radio. I had to give the song a chance to play. So believe me when I say putting my little, blue IPod Nano on shuffle was risky.
One day, I was in the car with my dad the radio DJ announced, “Next up is It Ends Tonight by The All American Rejects.” I dove so quickly for the radio dial you would have thought something was on fire as the lyrics sang:
“Your subtleties, they strangle me. I can’t explain myself at all.
And all the wants, and all the needs. I don’t want to need at all.
The walls start breathing. My mind’s unweaving. Maybe it’s best you leave me alone.
A weight is lifted on this evening.
I give the final blow.“
And because I was in the car with my dad and he wasn’t exactly a top 40’s music kind of guy, an urgent turn of the radio dial was fine. But what if I would have been to with my friends? What if someone would have protested, “Hey, I love that song, turn it back on.”
I’m not saying it is your responsibility to read our minds and know when something must be a ritual. But what I do challenge you to do is if you know someone with OCD, stop and think when you see them get anxious about something you think is small, “Could this mean something more to them than I know?”
Keep in mind they may be completing a ritual to put out the flame of their anxiety. And again, feel free to question it, but turning the song back on if you were in the car with “8th Grade Markie” would have resulted in me fearing my friend was going to die that night— a larger impact than anyone could have imagined at the time.
Don’t Throw Our Stuff Away Without Our Consent
If your friend with OCD is like how I was and has a knack for keeping things, please don’t surprise us by decluttering our space. You may think you did us a favor, but I cannot put into words the anxiety and even anger I have experienced realizing someone had gotten rid of my things.
Bless my mother for putting up with my clutter for years. But when my hoarding tendencies first started she, like most moms would, she tried to declutter my bedroom for me. And as you know from hearing about my motives for keeping things, what my mom saw as cleaning- throwing away old tickets, planners and birthday cards from years ago- I saw as forgetting memories. My worst fear.
Over the years my mom figured out how to deal with this part of my OCD, so I will tell you her method to save you some time:
One day when I was a senior in high school she bought some tote bins for me. She told me would could put my things I didn’t need to be right beside me in my room inside these totes instead. She promised not to throw anything inside the totes away or even move the totes themselves without telling me, the bins of my things would be in our basement available to me whenever I wanted them. This gave me so much comfort, and ended up being the perfect compromise.
Recycle Things That are Meaningful to Us
One of my favorite books growing up was about a little mouse named Crysthanamum. In the book, Crysthanamum had a favorite, yellow baby blanket she carried around with her everywhere. Casantramum’s neighbor kept telling her she needed to get rid of her blanket because she was too old to have a baby blanket and couldn’t take it to school. At the end of the story, the little mouse’s mom ends up cutting her blanket into little squares she can take to school as handkerchiefs.
I am not saying this book was about a mouse with OCD, but what I am challenging you to do is think about what the person you love with OCD holds on to. Is it old mail? Planners? Stuffed animals? Books? And how could you (with their permission) recycle these things into something that is easier to store or could even be useful in everyday life?
Maybe you take up scrapbooking with your friend who lives with OCD, maybe you could make them a fun little mailbox to keep old mail in so it is not cluttered around their bedroom or house? You could encourage them to donate their books to the local library and reassure them they will always have access to their books by helping them sign up for a library card. You may have to get creative here like my mom did:
Fun fact- I still have the first flower I ever got from a boy.
My first boyfriend, Thomas, gave me a rose for Valentines Day over nine years ago and it is still back up in Green Bay, Wisconsin on one of my shelves. And before you start picturing this, no I do not have a dead, rotting flower from one of my high school boyfriend’s on my bookshelf.
My mom knew back when I was fifteen, there was no way I would throw that flower away- too many emotions and memories were tied to it. She was also well aware that I would have a decomposing flower in my bedroom if she did t do something about it. So one day when I came home as a sophomore in high school, still dating Thomas, I saw my flower sitting on my nightstand but it has been turned into potpourri. This way I didn’t have to be embarrassed for keeping an old flower and she didn’t have to smell it.
Now in 2019, would I really care if my mom threw the potpourri away? No. I haven’t talked to Thomas in almost a decade. But it’s so funny how quickly that simple decoration of potpourri just became part of my bedroom. And now, ten years later, I don’t think of Thomas when see it sitting in my room when I am home for Christmas, I think of how much my mom loved me through my battle with OCD and tried her best to help me feel better.
Embrace Us for Who We Are- Quirks and All
Shoutout to my friends and family for this one: thank you all for embracing things like my love of the number 54 among everything else. Looking back, I don’t think a lot of people would have done that, especially not knowing I had OCD. You all could have just dismissed me as being really weird or even worse, made fun of me for my obsessions, fears, and compulsions. But you didn’t.
Instead my parents bought me jerseys for my favorite sports teams with the number 54 on it, like a Green Bay Packers Football and a Marquette Basketball jersey, for Christmas. One of my college boyfriends, Brogan, bought me the 52 Lists book for Christmas my senior year. This is literally a book that gives you prompts to make lists about once a week for a year. And he was so thoughtful about this gift that he stapled a “4” over the two and added two lists in the back for me. You all didn’t question or spit at my enjoyment of seeing the number 54, instead you embraced it.
May 1st, 2010 was the Saturday of the Greater Green Bay Figure Skating Club’s annual ice show. The theme that year was “The 50 States”. Our ice shows, basically dance recitals at an ice rink, were usually organized with a theme and skaters were assigned to perform to different songs that fit the theme. We had themes like Disney, another was “As Seen on TV”, there was even one year that the theme was “Love and Cars (I still don’t understand why that was a theme). Anyway, 50 States was a relatively normal theme, and as I was now 16-years-old I go to do more duets and solos, mine specifically that year was to the musical Chicago for the state of Illinois.
My friends from high school came to watch me and in true loyalty to our friendship, made a big sign with the number 54 on it that they would hold up when I skated, just like the one from the hockey game where 54 first started.
But don’t get me wrong, there were people who did think my whole 54 thing was pretty weird.
One of those people was Nelly, a girl I figure skated with. Nelly and I had been on the same synchronized figure skating team for years; however, one year she decided she was too good for our little, small town figure skating team and up and left to join a better team a few hours away. Once she moved, she had an air about her, thinking she was better than all of us who could only afford to skate in little old Green Bay.
My friends from high school in the stands reported to me that they overheard Nelly, who still wanted to be in the Green Bay show despite her new rise in status, telling her friends, and I quote, “54 was a bad number because it’s Markie and Jenny’s number.”
This caused my high school friends to hold up their 54 sign as Nelly skated to her ever so prestigious program representing the state of Utah, during which she scowled (and sometimes fell) when she looked out into the crowd and saw 54 glaring right back at her.
So embrace your loved ones with OCD’s quirks, back them up like my friends and family did. Of course, help get them treatment so not everything revolves around the number 54 or they feel as though they can’t touch a sock. But just show them that you care because to get through living life with OCD, they will need to know that.
Alright, I know this may only apply to people who know the 60 people in the world with HSAM, so my audience for this part of the article isn’t a huge one.
Goodbye everyone else!
However, there isn’t much out there on how to support someone with HSAM, so I’ll try my best to fill this gap in the market.
What I have found most common in interviews with different media outlets, whether its a segment on local news or an interview for a magazine, is journalists love asking me “what is the worst part about living with HSAM?” And I am honest with them, it was challenging to navigate a life with HSAM for awhile because there are not many resources for it.
But then I try to focus more on the positives of my memory because that is how I am choosing to live my life now. However, most journalists always go back to, “but it must be so painful to hold on to all those memories, right?” or “how do you ever let go of things?” Basically, the media seems to be interested in my suffering, what about my memory causes me deep distress because maybe that is what sells? But if any of you reading this know me personally– being a Debbie downer just isn’t usually my thing.
For every time I have been asked what the worst part of having HSAM is, you know what question I have never once been asked by a journalist?
How can people support you or someone who has HSAM?
The conversation always seems to stop at my misery, when it should really continue into if HSAM can be hard to live with for some, how could you support the person as a parent, friend, sibling, etc. So if no media outlets will ask me that question, I’ll ask it to myself. Here are some tips:
Don’t Doubt Our Memories
Before any of you get defensive or start thinking I’m pretentious, let me just say I respect that everyone has personal memories. I am not saying that if you remember something differently than your friend with HSAM you have to believe them. But please don’t get into an argument with us about it. I have learned to contain myself, for the most part, when someone is wrong.
For example, I had lunch with the Dean of Student Affairs at a university I was interning at my second year of graduate school. She was originally from Kansas City and commented on how the Royals won the World Series on her son’s birthday, November 2nd. Well I didn’t want to break it to her over our lovely meal, but the Royals won the World Series on November 1st, 2015. I knew this because I was watching the game with Brogan, who was also from Kansas City and was a huge Royals fan. It’s hard to forget someone grabbing your arm, screaming, and shaking you every time the ball was thrown during the last inning. But I was not in the business of telling this woman she was wrong, why would I? It was her son’s birthday, I’m not that rude.
So when talking to someone with HSAM, I encourage you to take a similar approach.
These dates are our most valuable possessions, those of us who have HSAM. How would you like it if someone walked up to you and told you your favorite sweater you thought was name brand looked like a knock-off? Did that really need to be said? No. Does it really matter in the end if you are discussing the past and you think something happened on January 28th and we think it happened on the 30th? No. And from weeding through my HSAM, I am able to admit this. But if your loved one has not, remember our memories are like your prized possessions that you hold so dear. Let us marvel at them in peace and come reminisce along with us if you would like.
Ask Us Some Questions About the Past
If you’re a very good singer, I bet you would be flattered if a friend asked you to sing at their wedding. Well, same goes for us. I love when my friends reach out with questions for a purpose. Only a few weeks ago, Jenny texted me because she was trying to find a specific DVD of herself skating, and amongst all the recordings she had she did not know which one her program from the Wizard of Oz would be on.
“What year did I skate do my Scarecrow program at Skate Green Bay?” she asked.
I immediately answered 2007, and just like that she found the DVD.
“I knew you would know!” She replied. And believe it or not, that small text exchange made my day.
This is our thing, we are good at this. If you need to know what day something happened on or what year an event occured in, we got you. Don’t be afraid to ask if we can make your life easier because using our talents to help others is fun, just like with any other talent.
Don’t Assume We have Negative Attributes You Think Would be Associated with HSAM
My roommate in graduate school, Katie, said to me one day after we had been living together for almost a year, “You know, after reading about your memory I wasn’t sure what living with you would be like,” keep in mind we had only met once before going to the same graduate program and becoming roommates, “But you are very forgiving for someone who can remember every day of their life.”
To this day, that statement remains one of the kindest things anyone has ever said to me.
A lot of people assume someone like me would be notorious for holding grudges, and just like most other humans I have a few things that happened a long time ago that when brought up can make my blood boil. But for the most part I have learned to accept that people grow, change, and ultimately learn.
Even if I remember something someone did ten years ago that was not in the best of taste, I know that person has grown passed the point where they are frozen in my own memory.
Gertrude, the girl who walked into my dorm declaring I didn’t have OCD, won’t always be someone’s cynical college dorm room neighbor. She will go on to be someone’s favorite boss or the love of someone’s life. Nelly, the girl who did a skating program about Utah, won’t always be the uppity figure skater she was as a teenager, and eventually she did grow into someone else.
Why would I insist that these people are the same and hold a grudge when I remember very well how much I have grown and changed myself? Right now you are hearing my narrative, but it is very possible in someone else’s story I play the role of the annoying neighbor or snobby ice princess.
People change, grudges aren’t worth it, and I would like to think with the memory abilities we have other people with HSAM have come to realize this as well.
Take Our Memory into Account in Different Situations
Being mindful of people’s experiences and identities that make them who they are, I believe, is one of the most respectful things you can do. I try to do this as much as I can for my friends, but I’ll admit there are times I too slip up on this.
If you are friends with someone with HSAM, take their memory into account in different situations. Before you say something, think about how many times it may play over and over again in their head. Is it something they really need to hear?
Before you invite them to a party to show people the cool thing your friend can do, consider how you would feel putting your deepest memories and thoughts on display.
But also, on the flip side, consider how you would feel if someone had a friendship with you and just ignored your greatest talent.
I can’t sing (which you know very well if you have ever been in a car with me or next to me in church), but man if I could sing I would be pretty frustrated if no one ever asked me to show off my vocal chords. But for those of you who have been blessed with the voice of an angel, tell me this: would you feel more comfortable singing in the middle of a grocery store if someone asked to hear our singing voice or in a concert hall for a show you had been rehearsing for?
Or if you are someone who is bilingual, would you feel more comfortable speaking your second language to someone who can only speak your second language or on demand at bar when one of your friends says, “You can speak German, say something!”
It is a lot more comfortable for me to know I am going to be asked a few dates for a TV show or a research study, or even by some friends for fun rather than on demand in front of strangers.
Back one summer when I was working at an art studio before graduate school, a person who had read an article about me in the newspaper spotted me while I was working, helping little kids put the correct glaze on their ceramic fish or whatever they chose to paint.
Suddenly a man behind me yelled, “What happened on April 12th, 2007”
I literally jumped and turned around not sure exactly what to do. Probably like someone would if they were in the same situation and they were a good singer. Imagine being at work and some person you don’t know just shouted, “Sing ‘I Will Always Love You’ by Whitney Houston for me!”
Just Listen, and We Will Listen to You Too
“Hey, I’ll be back in Milwaukee tomorrow. Can we get lunch?” I texted one of my best friends from college, Allison.
I was flying into Milwaukee from Seattle before driving back to Indiana to start the last year of my Master’s program. Allison was also starting the last year of her Master’s program but at Marquette. She still lived close to campus, so we met at the Qdoba we frequented as undergraduates for a quick lunch or after a long night.
“I know it sounds kind of silly,” I began, “But on my way home I started reliving that stupid break-up. I haven’t thought about it in like a year but now as I relive it day by day it seems so real again.”
“I was wondering when this was going to happen,” replied Allison, as if she knew me better than I knew myself– and a lot of the time she does– that is what best friends do.
So something I haven’t gone into too much yet is the reality of reliving things when you have HSAM. I think other people do this too, but it may just look a little different for us. For me, if I see a date and it brings back a memory with lots of emotions, I relive it right then and there, especially when I didn’t have the skills to stop my thoughts as well as I can now.
On my way back from Seattle back in 2017, I noticed I hadn’t talked to my most recent ex at the time in year, on that very day. This brought back a lot of old emotions, and to be honest I was really caught off guard at how hard it hit me that day.
So Allison allowed me to just sit and talk to her about something that happened almost two year ago as if it were yesterday. She had heard these stories and my thoughts about them probably over a thousand times, but there she sat listening as if it were the first.
We all need someone to listen sometimes, someone to lean on. For those of us with HSAM it might just be more about listening to things that happened a little bit longer ago, maybe that you already forgot about.
And I promise if you provide a listening ear, I (and most likely others with HSAM too) will provide one for you too– and even throw in a couple memories of times you did something really good, something important, something we will always remember about you. Because even if you don’t have HSAM or OCD, in the end we are all human and we all need love and support in order to thrive.
One of the first things I learned becoming a mental health advocate in college was that every personal story about a mental illness needs to end with treatment. Why? Well, if we just share stories of our battles with mental health issues and stop at the parts where we felt defeated, our narrative doesn’t give hope to those who are currently struggling.
So I would be remiss if I did not share the ending to my story of living with OCD: getting treated and overcoming. Full disclosure this isn’t the whole story, it’s only the beginning of a very long road of treatment, but this is where it starts.
I will admit, at first, it was weird.
When I got on medication, I felt like a new person only after a few weeks. It was great, don’t get me wrong, but because I had been living under the wrath of obsessions and compulsions for almost ten years, my brain seemed strangely quiet as thoughts were able to harmlessly run free throughout my mind.
And some of the people in my life who had lived with my rituals, obsessions and compulsions were absolutely flabbergasted with the new me:
“Squeeze,” my dad called for me as he walked into the computer room where I was doing my homework, “Do you want me to turn the TV down? I didn’t know you were doing homework.” he said, almost fearing my response.
“No, its fine,” I said as I went back to writing my English paper.
He stayed in the doorway, giving me a strange look, “Are you sure? Because usually you…”
“Yeah I know, it’s not bothering me,” I smiled.
When I wasn’t medicated noises would echo through my brain like someone had an amplifier on high in my ear drum. One little buzz of a fan or chomp of gum would be like nails on a chalkboard causing me to feel disgusted and many times even angry. The irritability certain noises gave me stopped me from concentrating, so when I did homework, I needed the whole house to be dead silent; one noise from the TV or hum from the air conditioning would drive me up the wall. Now, I had this ability to block out the sounds like I never had before.
Then there was my figure skating coach.
“You just did your scratch spin in the left corner,” Coach Simone commented.
“Yes I did,” I smiled.
“I’ve been coaching you for ten years, and you always do your first spin of every practice in the lower right corner of the center circle.”
I just gave her a nod, she wasn’t wrong.
“But not today?” she asked, still in shock.
My OCD wasn’t completely gone, and I know it never will be. I still sometimes have to wear ear plugs at night if there is a noise getting on my nerves; however, not every single noise irritates me anymore.
Ritualistic thoughts still pop into my brain, but I gained the coping skills from therapy to say to the thought, “no, you are a ritual, and you are not real”. And it goes away.
Although I would say my rituals were the most impairing part of my OCD in terms of everyday functioning and the misophonia gave me the most stress and anger, the hardest symptom for me to overcome were the hoarding tendencies.
There are a lot of things I still feel compelled to keep, but I’m proud to report if I really need to do a “Marie Condo” on my apartment and only keep what “sparks joy”, I can scale down. However, my mom still has bins of my old things in my bedroom back home.
In December of 2011, I was nearing the end of the first semester of my senior year in high school. I had been diagnosed with OCD back in June and started my treatment in August.
On Saturday, the 10th of December, I had just arrived at the Neville Public Museum to play the infamous, Bruce the Spruce, Northern Wisconsin’s second version of Santa Claus (if you are unfamiliar with this concept, please see blog post #4). I had about 20 minutes to spare before my shift started, so I took a detour into the museum gift shop.
“Looking for anything in particular?” asked the sales clerk.
“Christmas gifts, I guess,” I replied, “I still need something for my grandma.”
“Well, what kind of things does she like?”
I decided to tell the clerk about how my grandmother had trouble getting rid of things, and how part of me didn’t want to get her more stuff to just keep and jam in her little nursing home room or haul down to our basement.
The clerk asked what my grandma all kept, so I told her about all the cards, letters, journals, record discs, newspapers, anything to do with Poland, anything to do with Catholicism and just about everything else under the sun.
“She has newspapers from 1945?” she asked.
“Yeah, like the Chicago Tribune from the day Roosevelt died and the day World War II ended.”
“You know,” began the clerk, “your Grandmother’s hoarding could be used for a good cause. So many museums and historical archives would just die for artifacts and records like that. She could donate her things and come see them in an exhibit.”
I had never thought about that before.
“Then they would never be forgotten about…” I muttered to myself. All my fears of letting things go, of memories fading away with the objects as I disposed of them started to be comforted.
The clerk regained my attention as she cleared her throat and said, “You know, sometimes the things we give away to others are the things we end up remembering the most.”
That Christmas my challenge to myself was instead of buying anymore gifts, I would give away my things to people. Things that were meaningful to them too because I knew I could trust them to treasure my belongings as much as I did.
Therefore, I want to tell you the stories of three gifts I gave away that Christmas: two beanie babies, a restaurant table sign, and an old letter. To you these objects may either seem like items to put in a ‘free-bee box’ at a rummage sale or, even more bluntly, the garbage can. But to me these objects were my memories in physical form, precious gemstones I could physically hold in my hand.
I knew I had to start getting rid of things, even if I only started with a few.
The Beanie Babies
My tendency to keep things really started with the 90s trend of Beanie Babies. I even remember getting my very first Beanie Baby at three-years-old.
I was at my grandma and grandpa’s house in Indiana, the one that looked like the Vatican and Warsaw in a greenhouse. My grandma told me she had a surprise for me. She took me in the kitchen and pulled out two little stuffed animals, a turtle and a giraffe. She told me that when she was at the mall a few weeks ago people were just going bonkers for these new little, plush animals. She said that immediately when the sales clerk put them on the shelf people were grabbing them left and right, so she grabbed a few too before they were gone.
She told me I could pick one of them to keep and the other would be sent to my cousin, Arynn, in North Carolina. I struggled for a minute to choose between them because turtles and giraffes were two of my favorite animals. The turtle’s name, ironically, was Speedy and the giraffe’s name was Twigs. I chose Twigs.
Twigs started what would soon become a large, fully registered Beanie Baby collection. Yes, I said registered.
I recently read and article about Ty, the company that produces Beanie Babies, and how it was the first company to have a website engage its consumers with its products. And from the day my grandma Evelyn gave me Twigs and for another almost ten years, I would be a very engaged consumer.
The Beanie Baby Club website was the first website I had an account for at the early age of five. The website allowed me to track the Beanie Babies I collected, with the help of my parents, of course because I was still learning how to read, and research new ones that I needed to find. I also had a plethora of Beanie Baby books that I dug into when I did learn how to read. I owned collectors manuals, Beanie Baby themed cook books, and I even collected Beanie Baby cards.
I was shook when I started kindergarten and kids were talking about Pokemon cards. Why would anyone collect Pokemon cards when Beanie Baby cards existed? *Side note: this is the beginning of the story of how I did not become a cool kid in grade school.
My Beanie Baby collection was my pride and joy for most of my time spent in the single digit age range. And yes, I know a lot of people in the 90s collected these toys thinking they would be worth money someday– in case you haven’t heard yet, they aren’t worth a thing. And yes, I did use this line on my parents to justify buying so many of them. I told my parents when I was in high school I would sell all my Beanies to pay for college. Well here we are, I am talking to you about my senior year of high school, and as you can probably tell I was barely ready to give up one of my Beanies, not to mention all of them.
I could remember where each beanie came from. I got my favorite dog Beanie Baby, Spunky, at a little gift shop in Green Bay called “Magic and Mischief” with my Aunt Dee Dee. There was the time I finally added Speedy to my collection, the Beanie Baby I had to give up for Twigs. I bartered from him at a flea market in Cedarburg, Wisconsin called “Maxwell Street Days”. This was an annual event my family went back to Cederburg for, where we lived the first three years of my life, to peruse the fairgrounds for someone else’s junk that would be our new found treasure.
Every year, after saving up all my birthday money and allowance, I took my collectors books and went hunting for Beanie Babies to add to my collection. I would go up to sellers who had booths with piles of Beanie Babies and point to a specific Beanie in my collector’s manual and ask if they had one like it for sale. At age seven, I was under the impression that someone who had what I thought was the privilege of selling Beanie Babies would obviously also own a collectors manual, but looking back I think I gave people who were simply trying to have a rummage sale a little too much credit.
Once I was able to read, I much preferred Beanie Babies with the tags still on them. First of all they were closer to being in mint condition, second of all the tags included their story, and third (and most importantly) the tags included their birthdays. This became a fascination of mine around age six and seven: I wanted to collect as many different birthdays as I could.
And finally around age ten, I stopped collecting Beanie Babies. I became more concerned with spending my money on the newest “Art Stuff” roll-on glitter gel from Bath and Body Works. But also, coincidentally or not, this was around the time I started collecting my own dates in my mind instead of in the form of stuffed animals. Now instead of gathering Beanie Babies from far and wide, I kept old calendars, planners, or anything else with a date on it instead.
So there I was, a senior in high school, who had not bought a Beanie Baby in almost eight years and still had an entire large, cylinder basket of them in the back of my closet collecting dust. There was a part of me that felt secure having them there. But I knew my new therapist and my mom were really working hard at coming up with creative ideas to control my hoarding behaviors.
It was Christmas day of 2011, and I was watching my two little cousins play together. They were running around my house during our family Christmas party using their wild imaginations to make up stories of adventures through the jungle and daring quests to save an imaginary friend in despair. And that is when I decided who my Beanie Babies would go to, who could be trusted with them.
I led Adele and Miranda into my bedroom and opened my closet. Their eyes glowed when they saw the plethora of Beanie Babies that laid before them.
“You each can pick one,” I told them, “as your Christmas gift from me.” The girls started rummaging through the Beanie Babies, overwhelmed with what choice to make- just as I was at three-years-old when I picked out Twigs.
“Oh, one thing,” I added, “there is one Beanie Baby I need to keep.” I grabbed Twigs out of the pile and explained to them how he was a special gift, and because of that I was going to let myself keep him, and just him, forever.
I will admit, my heart broke a little bit as I saw my Beanie Babies being ravaged through like I had done as a little kid back at Maxwell Street days. But once Adele and Miranda each picked out their favorite, watching my Beanies be played with felt therapeutic, and in a way freeing.
The Table Sign
On December 12th, 2011, two days after I had spoken to the clerk at the museum gift shop, I was writing an English paper on Sylvia Plath’s The Bell Jar when my mom appeared in the doorway of our computer room.
“Markie, I found this in the driveway just now.”
On the desk next to me she laid a plastic, pink table sign from a restaurant. It was like the ones they give you when you order something and bring the food to your table that folds over and stands on its own without a metal holder. My heart stopped when I saw the number on it: 54.
It all started at a hockey game.
On Saturday March 1st, 2008 myself along with three of my friends from my figure skating team were in a town about an hour south of us called Oshkosh. It was a game of a hockey league for dads who wanted to keep playing the sport recreationally. We were there because a few of my friend’s little sisters were performing on the younger synchronized skating team during halftime– we really took any gig we could get.
As we were sitting in the bleachers, a woman approached us with a large sign and asked us if we would hold it and cheer for her husband who was playing. The sign was not decorated, all it had on it was his hockey number thinly drawn in sharpie across the whole sign. It was the number 54.
So my friends and I were left with a large sign, with just the number 54 on it, and we thought it was hilarious.
My friends Jenny, Daisy and Hazel all were joking that the number “54” had some deeper meaning because as we sat there, we started to notice 54 everywhere. On the on the clock, on different banners around the rink, in phone numbers on the advertisements on the boards. All three of them kept saying, “Oh my gosh, it’s 54!”
“Oh my gosh!” I exclaimed, making fun of them, “it’s 39!” I said pointing at the scoreboard.
“What does 39 mean?” asked Jenny.
“I don’t know, what does 54 mean?”I laughed.
“Oh my gosh! Look now, its 45 seconds! 54 backwards!” I added. We all were laughing so hard we were almost in tears.
From that day forward, my friends and I experienced something I now know as “frequency bias”, when you notice something for the first time and then you see it everywhere. As if it were magic, we all started seeing the numbers 54, 45 and 39 just about everywhere, and it became one huge inside joke.
Things were a little different for me, however, because at this time I was living with undiagnosed obsessive compulsive disorder, so 54 became the number I was obsessed with.
And this number did not only become a joke with my figure skating teammates, all my friends at school started to know about 54 as well.
Eventually, the number 54 became the equivalent of signing my name.
For example, after I graduated high school, I gathered a bunch of my friends and to TP the house of every boy I went out with in high school–just because why not?
The first house we did was Gerald’s house, who was my prom date junior year and my rebound after my big breakup with Thomas. One of my friends wrote “54” with sidewalk chalk on his driveway while the rest of us were all tossing rolls of toilet paper up in the trees. When I saw she had written that number, I panicked.
“What are you doing? Writing that number is basically signing ‘Markie Pasternak’ at the scene of the crime!” Although she thought originally I was overreacting, I proved her right when 20 minutes later I got a text message from Gerlad:
“Well hi there! It’s been awhile- why did you TP my house?”
Even to this day, anytime one of my friends from figure skating, high school or even college sees the number 54 they will send me a Snapchat or text message. And even though I eventually had to get away from focusing on 54 so much, I love when people reach out because what was my obsession is now being turned into a means of connecting with people.
Back in high school, I decided 54 was always the answer when I didn’t have one. This even ended up serving me well on math tests. If I didn’t know the answer to a question, I would fake some work and put the number 54 as my answer. I kid you not, this strategy actually worked for me on three separate occasions. Why might you ask? Well, because it was 54.
So this brings me to Friday, December 4th 2009: my first date.
If you remember my first boyfriend, Thomas, from other blog articles, the one who bought all of his clothes at Fleet Farm and was lost for words when my dad offered him a hot dog, he is the one who was picking me up for a date that evening.
He pulled his gold, 2002 GM Saturn into my driveway, which was still clear of snow, rare for December in Wisconsin, as I rushed out to his car– not wanting my parents to meet him at the front door.
The first part of the date was actually really romantic to my 15-year-old self, he drove me around Green Bay and showed me all of his favorite Christmas lights after taking me out for a butter burger at Culvers.
Then Denny appeared.
Denny was Thomas’ best friend who had a tendency of crashing all of our dates… even our first one. He literally found Thomas’ car as we were driving around Green Bay and drove behind us until Thomas realized it was his Volvo following us. I was a little displeased the first time this happened and very much did not know how to act I’m this situation.
Denny, Thomas and I went to the mall, and as I walked around I tried desperately to look for people I knew. Green Bay and De Pere are small places, there had to be someone from either school or skating that could get my out of this awkward third wheeling, bro-mance situation.
I didn’t see a single familiar face, but I did see a familiar number.
On the back of someone’s sweatshirt was the number 54. Suddenly my phone started to vibrate, it was my friend Kamry.
“Hey Markie, I know you’re on a date, but I just called to see how it was going.” This was a very Kamry like thing to do. She was also the friend who knew my house’s garage code and would be watching TV in our living room on a Saturday morning when my parents and I woke up ready to be included in whatever the Pasternak family had planned that day.
“Kamry!” I exclaimed, “We are at the mall and guess what number I just saw on the back of someone’s sweatshirt?”
“Oh my gosh, oh my gosh!” she replied “54!”
I am really not kidding you when I say some of my friends got just as excited about this number as I did. Here is some proof:
This phone conversation got Thomas’ and Denny’s attention as they heard me exclaiming about 54.
“What number? What are you talking about?” they asked. And from that moment on, Thomas (and Denny) were in on the 54 game. A few weeks later Thomas (and I guess Denny too) and I started dating.
My parents thought Thomas was so sweet. But who was the happiest about the new couple? Well, when Grandma Evelyn heard I had snagged a boy who was Polish AND Catholic, she was convinced he was my destiny.
54 made for cute moments on Facebook, between Thomas and I, as most relationships shared in 2010. He posted a picture once while he was at Culvers with his buddies of the table sign number he had gotten– and of course it was 54. “My favorite restaurant, your favorite number <3” the caption read.
Later that year, at the end of August, when was going into my junior year, Thomas left for college in Milwaukee. Two hours away felt like an ocean away, and I decided we had to break up.
I knew college life would be different and that I wanted to continue enjoying high school. Then on Thomas’ second day in Milwaukee, I was sitting in my living room in full break-up-mode watching Little House on the Prairie with a pint of ice cream in my lap when my phone rang. It was Thomas and he was crying.
“I’m miserable here. I’m homesick already, so I found the nearest Culvers to get a butter burger and when they gave me my table number it was 54.”
I tried to calm Thomas down and tell him it was okay. I tried to tell him that college would be great and he would meet a lot of new people.
A long time ago, I heard a quote, “If you love something, set it free, if it comes back it is your’s and if it doesn’t, it never was.” That was my philosophy with Thomas. He was my first love, at that time I had never cared about someone romantically the way I cared for him before. So I mustered up all my strength to spit out:
“You will meet another girl better than me. She will be pretty, fun, and in college. You won’t even think about me once she comes into your life.”
“But I don’t want someone else,” he replied.
There was silence over the phone.
“I want a girl who loves the number 54, who figure skates, and who plays the goddamn Euphonium!”
“Well I am sure there is another…”
“No, no there isn’t, Markie. Where the hell would I find one? You’re too unique. I want you.”
Those words echoed in my head as I stared at the pink, cracked in half, table sign my mom had just laid on the computer room desk. I hadn’t heard from Thomas in over a year. We tried getting back together, I was crushed, he admittedly was crushed too and asked for me back again. I said “no”, it was too painful to hold on any longer. And soon after he found another girl, just like I had predicted. But if he was so happy with her, why was there a 54 sign from Culvers sitting in my driveway?
I didn’t know what to do. I told some friends about the sign and asked, “Who do you think left it, did you?” hoping one of them would say “yes”. But I knew who the sign was from, my friends knew who the sign was from, and so did my family.
Grandma Evelyn was ecstatic. The Catholic Polack had fluttered back into my life and there would be no more running around with Protestant boys like Gerald. But I talked to my grandma about what happened, while my parents were making a payment to the nursing home, and I told her the truth.
“Grandma, I’ve always wanted to have a love like you and grandpa had. Sometimes I read your love letters from the war and the old cards you kept. I know you think Thomas is the answer to your prayers, and mine, but he’s not. I just know.”
Maybe it was the medication. Maybe it was the therapy. Or maybe it was my intuition but this was the first time I didn’t need 54 to be the answer.
So here I had another thing to keep, another thing to hoard. An old broken in half table sign from Culvers that reminded me of heartache.
But then I thought, did it have to be that way?
So there stood, the night of December 23rd, 2011 all the way across town in Thomas’ driveway. Two weeks after my mom had found the sign, and one week after I had gotten a Facebook message from Denny that him and Thomas had indeed left the sign. My friends Nicole and Efua (Despite my quirks, I had a lot of friends in high school. I am not trying to confuse you with all the names—promise.) dropped me off in front of Thomas’ parent’s house and slowly drove around the corner, awaiting my return.
There was a snow blizzard that night. As I walked to Thomas’ front door, the blowing snow became calm. If I had to choose a moment in my memory in which there was the most stillness, the most quiet, it would be this one.
I walked up to his doorstep and put an envelope with his name on it next to the door, sticking out from under their doormat. I didn’t ring the doorbell, I knew someone would find it eventually. Looking at his house one more time, where so many memories were made, I took a deep breath, walked away and let it go.
Inside the envelope there was a letter that read something like this:
Hi. I hope you’re doing well. When I found the 54 sign from Culver’s on my driveway, I honestly didn’t know what to do. So I decided to write you a letter.
First of all, here is what I know about you now: I know you flunked out of college and are living back home with your parents. I heard that through a friend from skating. I know you are now taking classes at the local technical college, and I know you are still dating that girl you met in Milwaukee. But that’s really it.
So here’s an update on me: I am trying to figure out where to go to college next year. I am between Madison, Marquette and St. Thomas up in Minnesota. I want to study psychology, but I don’t know exactly what I want to do with it. I was diagnosed with OCD a few months ago and have really found treatment to be helpful, and I want to help other people. Also my dad is handicapped now. He can’t walk anymore, and to be honest it’s been really hard. Those are really about as far as my updates go.
Here’s the thing: I don’t care what you do with this letter. You could just throw it in the trash when you’re done reading it. You could put it in a drawer and save it forever, like I probably would. Heck, you could even burn it. But there is one thing you cannot do- reply to it.
I think this is where our story ends, but it doesn’t have to be a sad thing. When you left the 54 sign on my driveway, either me or one of my parents ran it over with a car. The sign cracked perfectly in half. So I decided I get to keep one half and you get to keep the other. If you choose to save your half of the sign, I hope you will remember not how much it hurt when we lost each other or the fights we got in over the phone. I also hope you don’t hang on to memories that are no good to you anymore, reminiscing on the night we spent out by your campfire or laying in the sun together on the beach. But what I do hope is that every time you look at the number 54, you remember what your first love taught you.
The Old Letter
Sitting in a circle two days later on Christmas day of 2011, my family took turns opening gifts one by one. I watched as my little cousins played with their new Beanie Babies and would pull my mind back from drifting off thinking if Thomas had received my letter.
My family always went around the circle youngest to oldest, so everyone had to watch each other open their gifts. My little cousins went first, unwrapping their presents, glowing with excitement. But it seemed as we went around the circle, the excitement grew less and less with age, until finally it was my grandma’s turn to open her gift. She just looked sad.
Grandma Evelyn got some shirts and scarves from other family members, and expressed her gratitude as much as she could. Since my grandpa Bill died, during the holiday season she always seemed to have a dark cloud looming over her head instead of the joy of Christmas the rest of us seemed to be feeling while unwrapping presents and digging into our slice of pumpkin pie. And finally this year, I had an idea of how to cheer her up.
After a few rounds of gift opening, Grandma Evelyn picked up the envelope with “Grandma” written on. She knew it was from me, since I was her one and only grandchild. At first she opened the card with little enthusiasm until she pulled out the contents of the envelope: which ironically was another envelope. This envelope, however, did not illuminate the bright white the other envelope did, rather it was brown with age. As she held the second envelop, her hands started to shake and tears started to well up in her eyes.
“What is that?” my aunt Dee Dee whispered to me loudly across the room, as is customary for my family’s communication style.
My mom, answered for me as I walked over to stand next to my grandma, “It’s from Bill,” she told my aunt, smiling at me.
That day at the museum I had finally decided what to give my grandma for Christmas. Since she moved to the nursing home, most of her belongings she had kept were in our basement. But I kept a few boxes of her things I did not way my parents to get rid of in my bedroom- the safe haven for all hoarded objects in my house. In this particular box were the hundreds of letters my grandfather and her had written back and forth to each other during World War II. I remembered what the lady at the museum had told me and thought one day I may donate the letters for historical use, but I knew that Christmas there was someone who needed them a little more.
I found a letter from December 25th, 1943 written by my grandfather all the way from Sicily, Italy where he served in the war. And right there, 68 years later, in my very own living room, I saw the look on my grandmother’s face I imagined she had the first time she saw that very same letter as an 18-year-old girlfriend of a soldier back in Indiana. I could see on her face the memories coming back to her, and I could feel the same joy radiating I felt myself everytime I held in my hand an artifact from one of my own memories, whether it was Twigs or my 54 table sign. But what I had given her was more precious than any gemstone could ever be because for a moment what was just a memory of my grandfather seemed to come alive once more, if only for just a minute.
That was that Christmas I started to realize the good I could by confronting my OCD and sharing my love for memories, not only for my own recovery but for other people too.
This coming Christmas, now in 2019, I am finally working with the Indiana State Museum on my way back up to Wisconsin to archive my grandmother’s things for research and museum exhibits, including all the letters.
Later on as I was tested more and more by HSAM researchers throughout college, my hoarding tendencies actually became useful. The researchers used my personal artifacts to create autobiographical questions to ask me when testing my HSAM. Researchers will now just ask my mom for a box of things from my old bedroom, stored away in toats next to my grandmother’s things in a storage locker, and from the journals, planners, pictures, tickets, brochures and birthday cards they come up with questions for me to test my memory and learn more about how it works.
And what makes me know deep down there is a purpose for all of this, the joys that HSAM brings and the trials my OCD brought, is that the research being done on HSAM is being used to find out more about Alzheimer’s disease. So each of my items I have tucked away for safekeeping is actually helping fight what took my grandfather away from my grandma in the first place. But that’s another story.
In order to figure out where my future could go with HSAM, it turned out I had to start by digging deeper into my past.
I want to start by telling you about the bain of my existence in Catholic elementary school: card changes.
Did anyone else have these? It was a discipline system made out of construction paper, and they also happened to be my greatest fear.
Every day all the cards started on green but if you did something wrong, the teacher would give you a card change. This meant you had to go in front of the class and change your card to yellow, indicating you made one mistake. And it could literally be anything from forgetting to finish your assignment to something as extreme as hitting Someone. The cards order went: green, yellow, orange, red and finally black. These stages ranked the severity of your punishment, yellow was just a warning but get all the way to black and it was detention and a call home to your parents.
As a third-grader, it was my biggest goal to never get a card change. But I knew this year I had gotten put in the strict teacher’s classroom, and as one of my classmates, Max, put it to us on the first day of school:
“Guys I walked by our new classroom last year before school let out and all the card changes were on red. We’re all doomed.”
I was afraid my streak of green cards would end. So on the second day of third grade I told my mom as I was getting out of our red mini van, “I hope I don’t get a card change today.”
And you know what happened? I didn’t get a card change.
From that day on telling my mom “I hope I don’t get a card change” became part of my daily routine. Every day right before I got out of the car to go to school I would say these magic words, which I believed made me immune to being punished.
Then one day we were in a rush, and I forgot to say the magic words. I worried all day at school something would go wrong, and then it did.
My entire class lined up to show our teacher our completed homework for religion class. When it was my turn to approach the teacher, I turned to the page in my book that was assigned for homework and to my dismay, I had forgotten to color the Virgin Mary. The cost was one card change.
I bawled my eyes out.
My teacher had to take me out into the hallway just to calm me down. “Markie, everyone makes mistakes,” she explained, “it’s going to be okay.”
But in my head this wasn’t just a simple mistake… something was telling me this all happened because I did not say the magic words to my mom that morning.
This ritual stayed with me all the way until the 6th grade, but what was strange was that it was no longer relevant. I had transferred schools to the public school district in my hometown after the 5th grade, part of my motivation being to get rid of these rituals and start fresh.
My new school, Foxview, had no card changes. Yet, I still felt like I had to say something to my mom before getting out of the car or I would have a bad day at school.
“I hope I don’t get a card change,” Changed into a longer speech: “I hope I have a good day at school, don’t get in trouble or have forgotten to do any homework. I hope I make new friends and you and dad are safe while I am at school.”
Funny enough, my mom never questioned why I said the same words to her every day, she just let me talk because I think she knew it made me feel better. But now that I went to public school, I carpooled with two of my neighbors every day, Tyler and Jacob. Tyler, who had been my best friend growing up, called me out on my ritual one day— and was the only person who ever did.
“What do you say to your mom before you get out of the car?” he asked.
“Nothing,” I shut him down quickly.
“It’s not nothing, everyday you say something before you get out of the car to your mom so fast that I can’t understand it. And you literally say it every single day!”
I shrugged it off like I didn’t know what he was talking about. So he just gave it up and said his usually parting words as I struggled to get my large euphonium for band class out of the trunk of my mom’s van, “Should’ve played the flute, Markie,” he laughed and went into the school yard.
But that wasn’t the only ritual I had, there were beginning to be so many in all different parts of my life.
I not only had a set or rituals for school, but also for figure skating, church, soccer games, and just about any other setting I was in on a routine basis where I felt something was at stake.
For example, although I loved figure skating competitions they came paired with a lot of anxiety, and therefore, a lot of rituals. I had rituals that required me to wear my hair certain ways for certain events. For artistic skating, which was more like show skating to fun songs in goofy costumes, I always had to wear my hair in pigtails or I wouldn’t place in the top three skaters. I believed this because the first time I won an artistic event, I was wearing pigtails.
As I got older and pigtails looked rather juvenile, so I purposely came up with programs that required me to wear wigs– so I could wear pigtails under my wig and complete my ritual. That’s why when my coach suggested I skate to this funny song she found called “Beethoven’s Wig”, I was beyond relieved for reasons unknown to her. Exhibit A:
And this was not the only ritual, I had to do a certain number of warm up exercises, no more no less, or I believed I would fall during my freestyle skating program. When I did my cap amount and my coach told me to keep warming up, I was very hesitant.
I had to do my first spin of the five minute warm up before the programs started in the middle circle on the right side of the hockey line or I believe I would fall during a spin in my program.
And if I didn’t do any single one of these specific things, I was doomed to lose the whole competition.
When my calendar path formed and my HSAM began, more rituals began to occur because now I had evidence.
Even though these associations were very illogical, I now had proof to say something like, “Well I wore my orange shirt on October 7th and I got a perfect score in my math test. And now I have worn that same shirt on October 24th, November 6th and November 19th and I got a perfect score on my math test every single time.”
My calendar memory acted as not only as evidence, but also as reinforcements for my rituals. And because I could remember so many small details about what happened before and after an event, it was easy to spot patterns and make new rules for myself to either make good things happen again or prevent bad things from happening.
Then when I was going into eighth grade at age 13, something much more valuable than a first place medal, a score on a math test or a card change became at stake: someone’s life.
One of my best friends in the entire world, Jenny, (whose name I changed because on August 23rd, 2007 She made me promise her I would never write about her depression using her name) was experiencing what I now know was suicidal ideation. I was the first person she told she was thinking about suicide, and although I did the right thing- told an adult and got my friend help- the weight of her life became heavy on my shoulders.
Suddenly I had over 10 rituals I had to do a day or the consequence was Jenny would attempt suicide again. And because I loved my best friend more than anything in the world, I made sure all things lined up and each intricate ritual was in place because my brain was telling me this was the only way, to keep her alive.
The worst of all the rituals? I believed if I told anyone about my rituals, Jenny would die. So even though my parents sent me to therapy, and I had the space to tell someone how I was feeling, I suffered in silence for a very long time.
What calmed me down? Spending Saturday afternoons going in my basement and digging through my mother’s totes of pictures and memorabilia to be reminded of a time when everything was okay.
Flash forward to February 22nd of 2011. I was 16 now, my hometown’s pride and joy, the Green Bay Packers, had just won the Superbowl with quarterback Aaron Rodgers leading the way, and everyone was still trying to perfect their “dougie” and “stanky leg”.
On this particular Tuesday evening, I was sitting in front of the computer in the back room of our house. I had Google open with an empty search box. I typed in the word “superstitious”.
I had heard about people who were superstitious and that they believed if they broke a mirror they believed they would have bad luck for seven years. Or that if a black cat crosses their path, they would be cursed. And for the last almost ten years I had gotten used to making up rules for myself much like these superstitions that naturally made my life harder. And through the years I had only admitted to one person that I had these types of toxic thoughts: Jenny, who was still alive and is alive today, but was fighting her own battle or mental illness.
Even though these thought patterns became my reality, they didn’t feel like my own thoughts. It was almost like there was a bully in my brain bossing me around, telling me what to do. And that night I finally had an ounce of courage to figure out what was going on.
The Google search for “superstitious” came up with numerous results, but there was one result near the bottom of the page that caught my eye: Symptoms of Obsessive Compulsive Disorder (OCD). I clicked on the link.
“OCD?” I thought, “Wasn’t that the thing that made people want to be really clean?” That’s all I really knew about it.
As I read the list of symptoms for OCD, I was in shock: I had never read something that had so accurately described the way I thought before. I had always believed my thoughts were a big secret, but here they were simply listed out on a website so bluntly. It read:
Intrusive or unwanted thoughts
Obsessions with certain numbers, words or colors.
Rituals that have no clear explanation
Need to constantly check things, although you have already checked them
Fear of contamination
I finally had an answer. I had finally figured it out. I had outsmarted the voice in my head because I knew what it was now— and it wasn’t actually me— it was a mental health condition.
A few weeks later on March 6th, 2011, I was sitting in front of that very same computer just staring at the screen saver as I heard my parents arguing in the room across the hallway.
My dad had been lying in bed every day for almost two months now. The ulcer in his ankle became too big and he couldn’t walk anymore. He would go to work in a wheelchair, come home and just go to bed. It was honestly like my dad suddenly disappeared out of my life.
If I wanted to find him, he would be lying in a dark room at the very end of the hallway, but I rarely went in. His presence in the rest of the house was noticeably missing. And although I was 16 going on 17 and out with my friends most of the time, it was still something on the forefront of my mind at all times.
I was attempting to do homework for my AP United States History class, but through the closed door I could hear my mom’s voice loud and frustrated, my father’s soft and defensive. I couldn’t sit there any longer, I needed to leave the house. But where could I go?
I needed someone who wouldn’t ask questions, and who would believe my terribly, unconvincing “everything thing is fine” that I planned spit out with a smile on my face. So I ran out the door, got in my rusty, old, black Pontiac, and went to visit Grandma Evelyn.
I arrived at the very unpleasant smelling Santa Maria Nursing Home on the other side of Green Bay. I normally wouldn’t have been able to handle going inside of a place that smelled so wretched of urine, but for Grandma Evelyn, I endured the odor every time. Mostly by plugging my nose until I got into her room.
I walked up to where she lived on the third floor. The place was very crowded, with nurses everywhere, it had tiny hallways with the rooms close together. It was also a very old building, having a parlor and what looked like the first elevator ever invented. When I got to her room, I saw that she had a little shamrock outside of her door with “Evelyn Pasternak” written on it. Which I knew she was not pleased with because my grandmother despised St. Patrick’s Day. She preferred St. Joseph’s Day, which was celebrated by most Polish Catholics later in March. St. Patrick was too “Irish” for her liking.
I slowly peered inside the door. She looked shocked to see me, which I did not blame her for. I never showed up unannounced or without at least one of my parents.
“Markie, what a surprise!”she exclaimed. “Where are Mom and Dad?”
“Just at home,” I shrugged, “I thought I would stop by and say ‘hi’ before skating practice.” Which she very well knew was on the other side of town, but I made it seem like a natural courtesy.
Grandma and I talked for a while as she sat on one side of the room in her wheelchair, and I on the other. I was her only grandchild. That is why her room was overwhelmingly filled with pictures of me. The entire place was like my personal shrine.
Her room at the nursing home was very small, smaller than most of the dorm rooms at the colleges I was currently touring. But somehow my grandmother managed to pack everything and anything into it. I noticed a large stack of greeting cards on her dresser. My grandma kept every single card she was ever given, and I mean every single one. I knew we had boxes of her old birthday cards in our basement somewhere from the 1930s because she just couldn’t throw them away.
Even beyond cards, she kept just about everything else you could imagine. What really puzzled my parents to no end was when she kept things like old candy wrappers and other things most people would consider to be “junk”. But I never said anything about her compulsive need to keep things, though, because I did the same thing.
The voice in my head would say things like, “You might need this someday. If you throw it out, then it is your fault that you don’t have what you need.” Sometimes I was able to combat that voice though. Logically, did I really need the dandelion that a boy I liked picked for me in the 8th grade? Or a ticket from the movie I went to on February 18th, 2008? But then the voice would say, “If you don’t keep it, it wasn’t real. All you will have is a memory, and how do you even know if your memories are real?”
And anytime my parents suggested I throw things away, I would just burst into tears fueled by anxiety. So I would end up keeping the dandelion and the ticket and everything else that cluttered my bedroom, just so I had something to reach out and grab when a memory came back and for it all to feel real again.
Or if anyone doubted the accuracy of my memory, I had the the evidence available to prove to myself I was correct: I had the birthday party invitation or the hand written note or my planner from the 6th grade, all providing me with accurate dates.
What parents didn’t understand was that keeping all of these things made my memories more real. For my grandma these letters and cards in her room I think made my grandpa more real again who had passed away back in 2004.
I sat and talked to my grandmother for awhile, who was simply going on about getting her nails done the specific color red she liked, why she decided to give up Bingo for Lent and how she wished my new boyfriend, Gerald, wasn’t German and Protestant. And then one of the phrases that showed up on my Google search last month flashed in my head: hoarding tendencies.
“No, it couldn’t be…” I thought to myself.
Suddenly my mind flashed to every time we drove passed the Mausoleum where my grandfather was buried and she would have to blow him a kiss and say, “Love you, Willy”. And if she forgot to do so, she didn’t forgive herself for the rest of the ride and insisted we drive by again.
Rituals that have no clear explanation.
And then there was when she used to live in her condo, which had white carpeting in the dining room. I remembered how many times I had heard fret about anything being spilt on that carpeting, even when no one was eating or drinking. She would go on and on about the “what if’s” of a stain.
Fear of contamination.
“Markie,” Grandma Evelyn began, “where are your parents, really?”
I saw the concern and the worry in my grandmother’s eyes. She knew I was here because something was wrong, she could feel it.
I had a choice right then and there- I could tell her about everything- my dad’s sickness, the arguing, my OCD. But she was about as ready to hear these things as was to admit them out loud. And I especially knew I couldn’t tell her about my parents. I knew her brain all too well.
So with all the compassion and composure I could muster up in one breath, I took her hand, squeezed tightly and managed to choke out, “Everything is fine, promise.” Just like I had always done.
The word “test” has meant a lot of different things in my life.
As a student it was taking an exam in history or math to measure how much I had retained from class lectures and homework assignments. As a competitive figure skater, testing meant skating in front of a panel of judges who determined if my skills were good enough to pass to the next level. Both types of tests caused me immense amounts anxiety growing up. I assume most people know what it is like to take a test in school, but let me amuse you for a moment and describe a figure skating test:
“Test Sessions” as we called them usually took place on a Friday morning, starting around 6 AM. They were events no one came to watch besides your mom and maybe there was a sibling or two of another skater in the bleachers playing on a Game-boy.
I was a skater who thrived off of a crowd’s energy, so test sessions where you could only hear the sound of crickets in the stands were not really my strong suit. I loved working the crowd and performing at shows and competitions, but testing just seemed like a chore. Making matters worse, there was no music allowed for most skating tests and they could last up to 20 minutes. That means every scrape, scratch and fall echoed over the entire rink and all you had to listen to were your own thoughts.
I want you to picture yourself right now on ice skates in the middle of a shed like structure turned into an ice rink. All you hear is dead silence for 20 minutes as you are all alone with no one but three judges over the age of 50 watching you like hawks from behind the boards. While they are wrapped in fleece blankets drinking catered hot chocolate, you shiver in a tiny dress and skin colored tights. Welcome to my childhood.
So needless to say the word “test” traditionally held a negative connotation in my head. But when I was 20-years-old, the semester after Dr. Nielsen’s class, I got an email from UC Irvine asking if I would be willing to get tested for HSAM. Let me tell you, I had never wanted to pass a test more in my life. I wanted to pass this even more than I wanted to pass my drivers test at age 16, for which I was so thankful to pass because I had failed the first time, that I gave the DMV employee a hug when I was given my licence.
And you’re probably thinking, “Why? You knew you had HSAM?” But this was a point in my life when I was still trying to prove myself. And my worst fear was not passing this test and then being left to deal with this ability all by myself.
So this led to me practicing- not studying, I am not a cheater- practicing. I knew I could recall the dates they would ask me, but what if I wasn’t fast enough? Or what if I accidently was off by a day and that one mistake cost me this entire opportunity to learn more about myself?
This is where I have to give some props to my college friends here because they let me practice with them. Thank you Allison,one of my best friends and my roommate that year, who checked me as I threw out random dates pacing around our bedroom. Thank you Ely, another amazing friend who threw random dates at me in her kitchen and cheered me on as I dug in my brain for answers like I was racing to win the Kentucky Derby.
Looking back “practicing” is what built my confidence.
To test people for HSAM (at the time I was being tested) there were two batteries of tests to complete: the 30 Dates Quiz and the 10 Dates Quiz.
The first of the two I was asked to complete was the 30 Dates Quiz. This test included 15 questions where the researcher would ask me about a current event, and I would name the date it occurred on. The other 15 questions where I was given a date and asked to name the major current event that fell on that day. In order to get to the 10 Dates Quiz, I had to pass this one first.
Honestly answering the phone on March 1st, 2015 when a number from Irvine appeared on my caller ID felt a lot like stepping out onto an empty sheet of ice at 6 AM with three judges watching me. I cared so much whether I passed or failed that test, but the judges or in this case the researcher I was trying to impress tested people like me every day, people who thought they were exceptional at something.
And so walking around the kitchen of my college apartment, I started to answer the researcher’s questions. As she threw out current events, I was running along the calendar path in my brain. “What day was Obama elected president of the United States?” (Tuesday November 4th election, Wednesday the 5th announced as winner). “What day was the most recent major earthquake in Haiti?” (Tuesday, January 12th, 2010). And the list went on.
The only problem? My calendar path with my HSAM memory only goes back to 2005. So when she asked about events in 2003 or 1998, I didn’t have an answer. The researcher disclosed to me I was one of the youngest people they had tested at the time, and that’s where testing for HSAM with the 30 Dates Quiz starts to get tricky.
There were events I was asked to recall that a girl who was 14-years-old and living in Northern Wisconsin at the time of their occurrence would have no clue about. For example, I was asked what significant political event happened on December 4th, 2008. I racked my brain for an answer, but I had no clue.
Apparently a journalist threw his shoes at George W. Bush. But as a freshman in high school I didn’t even know that event took place. I was more interested in the new Taylor Swift Album than a pair of Nike’s hitting the president.
This proved to be interesting when the last 15 questions were reversed. Dates were called out that I knew right away like December 14th, 2012 which was Sandyhook or the day Michael Jackson died.
Side note: I think I have yet to take an HSAM quiz when someone doesn’t ask me what day Micheal Jackson died on. My guess is that people think it’s a unique questions because it’s not a really well known catastrophic event like 9/11 or Hurricane Katrina, but yet everyone knows Michael Jackson. But I’m telling you now, this is not a unique question.
June 25th, 2009, it was a Thursday I heard about Michael Jackson’s death on the radio in my mom’s car and then they played “Man in the Mirror”. Later that day I went to my friend, Jill’s, birthday party and we talked about Michael Jackson while sitting on her trampoline. The end.
Anyway, if you’ve ever taken a psychology or sociology class, you’ve probably heard from a cultural perspective that the IQ test is biased towards western society, many tasks being familiar with someone native to the United States as opposed to someone from an eastern culture. The 30 dates test for HSAM is the same way.
Due to different cultural and age factors, different people remember different things as “significant”. So either HSAM is actually really rare or there are more people with HSAM who simply cannot pass the test because they are younger or not American. This is when I realized one of the biggest challenges for testing HSAM: because autobiographical memory is so personal not everyone may do well under the standard battery even if they do live with HSAM.
But on the flip side, researchers cannot make a different set of questions for every person they test. Not only would that take an immense amount of time, but also people would not be held to the same measure so the results of who has HSAM and who does not may not be reliable.
I was able to tell the researcher on the other end of the phone all the days of the week the dates they said fell on if the current events were out of my scope of knowledge scope, which they said was fine if I could give them a variable event around the same time. And with that I had passed phase one of the HSAM test.
The second call I had was about a week later on March 8th with the same researcher, but this time she was giving me a different set of questions called “The 10 Dates Quiz”.
I was at home in Green Bay taking this test over the phone during spring break. Most college kids went on vacation somewhere for spring break, but since my dad had died a year ago at this point I wanted to be home with my mom.
On the phone with the researcher, I walked around my childhood home recalling dates, as our cat, Linzee, stared at me with his squinted green eyes (yes, Linzee is a boy).
For this test ten dates between 2005 and 2014 were generated, and I was asked to tell the researcher everything I knew about each day they gave me. The days that happened to be selected were actually fun to go back to. One was December 1st, 2009 my first date.
“Where did you say you went out to eat on this date?” the researcher asked.
Until this point I didn’t know Culvers was a Wisconsin chain that expanded to only some other Midwestern states. I really could not understand why this researcher from Irvine, California had no idea what a butter burger was- and if you are reading this and have not tried a butter burger, turn off your computer and drive to the Culvers nearest you right now. Here I will make it easy for you: https://www.culvers.com/locator/view-all-locations
I’ve been described by my friends in college and graduate school who are from other states as “just about as Wisconsin as you can get” (obviously they have not met my extended family). During the 10 Dates Quiz in particular, my “Sconnie” side really shined through beside the sharp contrast of Southern California culture on more than just the December 1st, 2009 question.
“I’m sorry, you played who on December 13th, 2008?” the researcher asked.
“Bruce the Spruce, you know the talking Christmas tree from the story. “
Silence followed my clarification.
“I went inside the Christmas Tree at the museum and asked the kids what they wanted for Christmas. Bruce the Spruce!” Apparently this was just a Wisconsin tradition as well.
Another side note: if you have never heard of Bruce the Spruce you are 100% missing out. Bruce is a pine tree that apparently woke Santa up on Christmas Eve when he fell asleep in the forest of the North Pole. And to commemorate this tale the city of Green Bay took it upon itself to make a tree volunteers would climb inside and talk to kids as Bruce the Spruce in the middle of Prage’s Department Store. Once Prage’s shut down, Bruce was moved to the local museum which is where I became Bruce.
“What were you doing on August 9th, 2014?” the researcher continued to ask.
“I was on a date at the Wisconsin State Fair watching the baby goat races.”
Let’s just leave it at those three examples and say California was not ready for your’s truly.
And so the researchers left the phone conversation ready to verify that the baby goat races at the Wisconsin State Fair actually happened on August 9th 2014, at 3 PM and that the Green Bay Packers actually played the Seattle Seahawks on September 24th, 2012 during which game the “worst call ever” or the “fail Mary” was made. And not long after the call, the researchers contacted me telling me I had gotten 9/10 questions on correct on the 10 Dates Quiz correct. The score of an average person was 2/10 and the average score for someone with HSAM was exactly the score I got.
I officially was recognized as one of around 60 people with HSAM.
When I would pass a test in school, I would get a good grade. When I would pass a figure skating test, I would move up to the next level striving to achieve bigger jumps or harder moves. So after taking these tests for HSAM, I had to beg the question “Now what?”
P.S. I know you all are wondering what Bruce looked like… so here you go!
I am asked this very question a lot in interviews, especially by psychologists.
The first time I asked myself this question was when I started watching Disney Channel’s Lizzie McGuire. For those of you who are unfamiliar with the show, we see Lizzie, a blonde, bubbly middle schooler played by Hillary Duff accompanied by a cartoon version of herself representing her inner thoughts.
As a fourth grader, I thought this was really cool. I could relate to how on the outside she stayed composed but on the inside her little cartoon self was angry, embarrassed or scared.
So I imagined my own little cartoon character that spoke to what was actually going on in my head. She looked a lot like Lizzie McGuire’s cartoon, only I put her hair up in a ponytail, gave her a lime green tank-top, a jean skirt, and a pink scrunchie on her wrist (because it was 2003).
I remember my little cartoon clone being something entertaining to think about when I was sitting through Tuesday Morning Mass or Stations of the Cross at my Catholic Elementary School. I would picture her complaining about the smelly boy next to me or the parent volunteer at the end of the pew who was singing too loud for her given vocal abilities. Some days my little cartoon would swoon with how excited I was that the boy I liked was sitting in the pew right behind me.
Another, more recent, example of picturing our own thoughts and thought processes comes from Disney Pixar’s animated film Inside Out. In this story, a young girl named Riley moves from Minnesota to California and we as the audience are able to see inside of her brain. Five of the main characters are her emotions: joy, disgust, fear, anger and sadness who journey through her brain. Different sections of this vast land inside Riley’s head include her dreams, imaginary friends, hobbies, knowledge banks, and memories.
Riley’s memories are represented by little balls, each different colors representing the emotions she was feeling when the memory was encoded. They are stored in a large library looking place where memories can be sent up to Riley’s conscious mind at any time.
Looking inside my own head as a child, I had a wild imagination filled with a lot of color, like Riley’s. I was the kid with dozens of imaginary friends, I would make my own picture books- boxes upon boxes full, and I would always make up stories using Beanie Babies or Play Mobiles (of which I created an entire city of in our basement).
However, what really sticks out to me, knowing what I know now, is how I did and still do conceptualize numbers.
I always pictured numbers on a path, almost like a game board with a clear beginning and end (not going in circles like Monopoly). I remember being made fun of once in the third grade for counting on my figures because this was passed the point you should be counting on your fingers apparently. But in my head I wasn’t just counting, I was walking along my path of numbers.
Different sections of my number path are different colors too. One through ten is orange, eleven through nineteen are a deep, navy blue. This leads into the 20s which are purple, 30s green, 40s dark blue again, 50s yellow, 60s orange, 70s green, 80s more of a sky blue, 90s purple and then all the numbers from 100 up are just black.
Not only does my number appear in my head when doing math, but actually when it mostly applied as a kid is when I pictured someone’s age.
I vividly remember being in my granparent’s living room as a four-year-old celebrating my grandfather’s birthday. They lived in a little townhouse in the middle of Hamond, Indiana, and had a living room over decorated with flowers, Catholic worship symbols, and different versions of the white crowned eagle from the Polish flag. So basically picture the Vatican meets Warsaw in a green house.
Sitting next to my dad on their plastic covered couch, I asked him how old my grandpa was turning, and he said “80”.
That was the first time I ever heard of the number “80”. I had never counted that high before. So I started asking my dad questions about numbers, like what came before 80? And what came before 70? And as he listed the numbers for me, my number path began to form. I could see people along the line when he told me that grandma was 74 and mom was 37.
But then when I was 11-years-old something strange began to happen.
My little cartoon, Lizzie McGuire self I had created as a nine-year-old while bored in the pews of St. Francis Xavier Catholic Church was uprooted from a corner of my brain and dropped in the middle of a number path.
But this was a new number path I had never visualized before– it was a calendar.
This calendar path was just as colorful as my other number path, but it had days and months. And instead of the decades of numbers illuminating colors, the months did instead. February was pink, March green, April blue, May purple, June green and yellow somehow at the same time, July red and blue at the same time, August a golden yellow, September brown, October orange, November maroon and December a bright ruby.
But one month was missing- January. Where was January?
And this is when I made a strange discovery, my path started on February 12th, 2005. Anything before that is not on any sort of calendar. There are just random dates in my life I knew like my birthday and Christmas floating around in my memory, but no path. Finally, January was only formed when 2006 rolled around, born as a crystal blue with hints of snowy white.
Not only could I see the path, I could also mentally walk along it.
As long as it was in the past, I could get myself to it. In the middle of July, real time, I could mentally walk back to Easter Sunday- March 27th, 2005. Then I was able to run along to other days like our trip to Disney World in May. And when I went to a square on the path, I could dive right in the day. And there I would be on May 13th, flying on a plane to Orlando out of the Green Bay airport (yes they have an airport) sitting next to my cousins Ken and Nick. Ken using a portable CD player to listen to my copy of Now That’s What I Call Music 14, which I told him was “so last year” as the rest of the world was already on Now 18.
As new years began, December would attach to January and a new path would begin to form. And this path was not simply flat numbers like my other path. This calendar came to life with memories.
These things ranged from things in my life to current events I had heard about. When I walk to the end of August 2005 I see flood waters crashing, the destruction of Hurricane Katrina I saw on the news. And if I jumped three years later to August 2008, I can see the summer Olympics in Beijing, China that I watched from my home in Green Bay after we returned from our vacation to the Grand Canyon.
All this happening inside my head, I was the only one who could see this breathtaking, living calendar. So I started to talk about it.
I heard other people reference dates all the time in terms of anniversaries and birthdays. A lot of people remembered the day of big events like graduations or knew specific dates of holidays. But it became clear to me that my mental calendar was unique when I would casually comment, “Easter was on March 27th last year.” People were perplexed as to how I knew that and also seemed very skeptical of my accuracy.
I knew my dates of memories were correct, I could feel it in my bones. But what if for some reason it was not? What if the skeptics were right? What if I was just somehow making it all up? I always had a pretty wild imagination after all.
So in early 2007, I decided to check.
My mom kept a large bin of photos and other memorabilia in our basement. As I dug through the piles of birthday cards, pictures from disposable cameras, and old result sheets from figure skating competitions, I finally found what I was looking for: a paper booklet with the title Swan Synchro Skate 2005.
Why a city named Beaver Dam calls itself “Swan City” is still beyond me. No matter how many pictures of Swans their figure skating club tried to hang up around the ice rink or put on competition apparel, I still picture a large, brown furry animal with buck teeth when I thought of a town named Beaver Dam. Regardless, that was the name of their competition “Swan Synchro Skate”.
This wasn’t just any figure skating competition, many people don’t know there is such a thing as synchronized figure skating. “Synchro” as we call it in the figure skating world is when a team of 12-20 people on the ice are skating in uniform. I lived and breathed synchronized skating for ten years.
The day I was at this particular synchro competition was the first day I could remember so vividly. This was where my memory became different and the calendar path began. And I had to know: was this competition, that took place almost two years ago now, actually held on the days I saw it in my brain?
I could see it all so clearly, arriving at our American Inn hotel that Saturday. Our team skating to The Pink Panther at the competition the next day.
I opened to the first page and there were the dates: February 12th and 13th, 2005.
First I was relieved to find out I was in fact right, but then I was taken back by the power I had, really had.
Other people with HSAM have just reported a simple calendar in their brain, like any ordinary calendar you would see hanging on the wall of someone’s office. I’m not sure exactly why mine involves a form of Synesthesia and looks more like a road of a long journey rather than a page in a person planner. But I feel like without the florescent colors illuminating on my path of memories, remembering would be harder for me.
So I challenge you to think- what does it look like inside your head? What do you see when you conceptualize dates, numbers, and memories? What is unique about the way you think?
Who knows, maybe your perspective will change the world one day? Mine did.
I realized at a young age other people couldn’t remember the date Easter fell on four years ago or what day the Super Bowl was in 2007.
Maybe the 2007 Superbowl stands out to me because my father was a diehard Chicago Bears fan living in a house with two Green Bay Packers fans, and this was the season he finally had some glory.
Or maybe that Superbowl is memorable because my dad bought our family a new TV for the first time since 1985 to watch his big game.
Either way, I realized that I was different. Not only by having an ability to remember things other people couldn’t, but I also had a unique set of challenges too.
The first time I took a psychology class was in high school. I remember the day in class we talked about memory. My teacher explained very simple concepts and taught us mnemonic devices and other tricks to improve our memories.
From the back corner of the classroom, I slowly raised my hand and asked, “What about tips to forget things?”
The teacher gave me a puzzled look.
I explained that I had no trouble remembering things, but I wanted to know how to forget things instead.
So at that point in my life I was aware I had an ability most people didn’t have. But didn’t know it had a name or a purpose until my junior year of college when I found myself sitting in a different psychology class.
This class was called “Learning and Memory.” Anything to do with memory always intrigued me, so when the class suddenly opened up in the middle of summer, I signed up right away.
The professor’s name was Dr. Nielson. She is a tenured professor who studies Alzhiemer’s disease in what was known as one of the best labs in Marquette University’s Psychology Department, or at least as an undergrad we all thought it was because it was the hardest lab to get a spot as a research assistant in.
On August 26th, 2014, I sat in the front corner of the classroom. There were only about fifteen of us in the class. As it was the first day, Dr. Nielson reviewed the syllabus and outlined our tests and projects for the class.
She told us that although during the year we would study memory deficits, at the end of the semester we would each do a final project on enhanced forms of memory.
She explained we could pick from topics like people who can see a city once and draw a map from memory. Or people who have photographic memories, the ability to take pictures with their minds.
Finally, she added that the university where she did her postdoctoral work, UC Irvine, had a neuroscience lab studying people with a specific type of enhanced memory for their own lives called hyperthymesia (now known as HSAM).
“These people can remember almost every day of their lives by the date. They can tell you the weather, current events, what they were doing. It is very specific to autobiographical memory.”And that was all she said about HSAM for the time being until I approached her after class.
The two of us were out in the hallway when I told her I could remember dates like the people she talked about. So right then and there she gave me a chance to show her my ability:
“My birthday is December 11th, what can you tell me about that day?”
I told her in 2006 it was a Monday.
My dad was in the living room watching his beloved Chicago Bears play the St. Louis Rams while trimming our new Christmas tree we had cut down that Saturday. It was too tall for our house, so he was going to cut off some of the stump. When my mom and I walked in the room during halftime, we started laughing uncontrollably. Because unbenounced to my dad, he had been so distracted by the football game he had accidentally cut off the top of the Christmas tree instead of the bottom. It looked absolutely ridiculous.
And just to tease him a little more, we got a picture of him standing next to his deformed tree that I later made the screensaver on our family computer (and he didn’t know how to change it).
After I recalled that day Dr. Nielson just stared at me without saying a word, so I jumped to another December 11th that stuck out in my mind:
In 2009 it was a Friday.
I had just been asked out by a boy at another high school named Thomas. Thomas was not the usual type of guy I was into. I was more into guys who shopped at Dick’s Sporting Goods, while he preferred Fleet Farm- if you catch my drift.
Thomas went as far as calling Fleet Farm, “the man’s mall” and whenever he would drag me into that god forsaken place, my nose bombarded by the smell of tires and lawn care products, I would recognize all the men’s clothes on the racks because he already owned most of them.
That particular night we had gone to the mall– the real mall– and were now watching a movie in my living room when my parents came home from a Green Bay Gamblers hockey game, at typical Wisconsin date night.
It was the first time my parents were meeting Thomas so my mom politely shook his hand and introduced herself when they walked into the house, like any normal parent would. My dad, however, was a different story.
I am not kidding when I say, my father did not speak one word to greet Thomas. Not “hi” not “nice to meet you” or even the old “If you hurt my daughter I will…”
Oh no, not my dad.
Instead he decided to promptly pulled a leftover hot dog wrapped in tinfoil out of his pocket from the hockey game, looked at Eric, and asked, “You want it?” When Thomas confusingly shook his head no, my father shrugged and just went to his room to watch ESPN highlights.
Dr. Nielson just kept staring at me as I talked about December 11th. Finally with an astounded look on her face, like she had just found buried treasure, she asked “Can you tell me this much about every day?”
I smiled, knowing I was believed, “Yes I can.”
That semester Dr. Nielson and I worked together as I learned about the different facets of memory to prepare for my final project- a presentation to the class on HSAM.
It was Tuesday, November 25th, 2014 the last day of our Learning and Memory class when I presented my final project. Before I went up in front of the room I handed out slips of paper to every student in the class.
“Write down your birthday, just the month and day,” I told them.
When I collected all of the papers up in the front of the room I opened my presentation with, “I have something called Highly Superior Autobiographical Memory. I can remember every day of my life since February of 2005. Want to see?”
As I pulled the first slip of paper from the pile, I saw from the corner of my eye all the students getting their phones and laptops out, looking at me suspiciously.
It was me against Google.
The first slip of paper read October 6th, “That was a Saturday in 2007” I said, sat the paper down and quickly moved on to the next one.
I just said the days of the week so they could understand how quickly my memory could work. If a current event instantly popped up, I would throw it in as well.
As I rattled off years and days of the week, I could hear my classmates typing quickly and one by one as their birthdays were read off they looked up at me- no longer skeptics.
I pulled one of the last pieces of paper and saw “December 11th”, I smiled a little and looked at Dr. Nielson, “2006, Monday.”
I pulled the last piece of paper and my heart stopped. It read March16th.
There is so much that could have come out of my mouth at that moment.
March 16th was the day I was dropped off back at Marquette after spring break. The day my mom drove me to Milwaukee, my dad staying behind because he didn’t feel well. The day I had a marketing assignment due that I was up working on and had skipped Mass to finish. The day people on campus thought I would have been at church and were trying to find me because they had heard the news before I did. The day I heard my mom say over the phone, “Markie, dad died.”
I mustered up the breath to say,“It was a Sunday, this past year, 2014,” And moved on.
Now I had the class’s attention and the space to tell them what I had learned about HSAM.
As I spoke about how it felt to have HSAM and how I believed from my own experience and the research how HSAM worked, I saw Dr. Nielson at the back of the classroom- beaming.
The expression on Dr. Nielson’s face was not only one of pride but also one that read, “this is just the beginning.” And it really was:
I did not know that day Dr. Nielson would offer me a research position in her lab to study HSAM. Or that she would sponsor me through the McNair Scholars Program during the coming summer to do research to pay for my graduate school applications.
After my dad passed away, money was a large issue for my mom and me. I was really doubting at this point if I had the means to even go to graduate school, and HSAM was how I made it there. But more on that later!
The class asked all sorts of questions. Many questions no one had ever asked me before. Really I was never asked questions beyond someone testing me, making myself prove I had this profound ability. This was the first time I was asked what it was like to be me.
One of the last questions was from a girl in the front of the class, “If you could make your HSAM go away, would you?”
That question pulled me back to August 5th, 2008. My dad had just driven me to registration for my freshman year of high school. When we got home, he looked at me and smiled knowing four short years later I would be 18-years-old and going off to college.
“Markie,” he said, “ No matter what never change, never change for anyone.”
So would I give it up if I could?
“I always knew I was different. And there were sometimes I wanted my memory to be like everyone else’s, I wanted to forget things. But HSAM is what makes me, me. I wouldn’t want to change it, not for anything.”
One of the reasons I didn’t find out I had HSAM until college was because, generally, no one really knows what HSAM is. When I have gone to see a new therapist because I moved somewhere, I find myself telling them, “oh yeah, I also have this memory thing”. And when I say the technical name, I am the one explaining to the psychologist what it is.
Another reason I did not know what HSAM was for so long is because I did not have the words to describe it myself. Before I started my undergraduate degree in psychology, I did not have the vocabulary to put into Google to find the articles by UC Irvine or the first clip from 60 minutes featuring Jill Price and other people with HSAM like myself.
I found myself trying to figure out what was going on in my mind as a middle and high schooler by simply typing in things to search engines like “remembering dates”, and I would get a bunch of blog posts about people’s first romantic dates… Obviously not what I was looking for. I didn’t know what “autobiographical memory” was until college, and this was the key to understanding HSAM.
Memory is conceptualized by many psychologists in a tree like structure. The top of the tree has two overarching categories of memory, declarative and non-declarative memories.
Non-declarative memories are otherwise known as procedural, things like brushing your teeth or walking. These are things are brain needs to remember how to do in order to do them, we had to learn to walk across a room at some point in our life. But we have done these things so often, we do not consciously have to recall how to walk every time we need to get out of bed in the morning.
Declarative memories are things we consciously recall like facts or times in our lives. There are two types of declarative memory, semantic and episodic.
Semantic memories are facts. If I know the capital of the United States is Washington D.C., then I am using my semantic memory to recall this fact.
Episodic memory is the retrieval of a past event, like remembering your 10th birthday or your junior prom. When you picture all the dresses you saw at prom, maybe the decorations and the music playing- that is episodic memory.
When I first started educating myself on the science of memory I thought autobiographical memory was simply episodic memory but more specific to yourself. This is not the case!
Autobiographical memory is actually a combination and both episodic and semantic memory pertaining to the entire history of you. For example, if I recall my high school graduation I can tell you I graduated from De Pere High School, that is a fact or a semantic memory. But I can also picture myself giving the class speech to a gym full of people, which is coming from an episodic place.
The memory of my high school graduation becomes a full autobiographical memory when all the information is in place. I know it was held in our high school gym, and I can actually picture the ceremony taking place, my family sitting in the bleachers, and my principal shaking my hand and handing my diploma.
Having HSAM makes both the semantic and episodic parts of my memory more intense. My ability to recall what day an event in my life happened on is semantic memory.
For example, I can tell you for a fact I met Mark Cuban at a bar in Indiana on Friday, August 25th. It is a fact that event took place- I have a picture to prove it. But I can also visualize myself pushing through the crowds of people at Nick’s English Hut in downtown Bloomington when I saw Mark Cuban. Then I can picture myself pushing harder through the crowd to get to meet Mark Cuban because well it was Mark Cuban. And that is all episodic information as I reply myself being over the moon posing for a picture with Mark Cuban. This memory is an autobiographical one, made up of both episodic and semantic pieces. Having HSAM gives me the ability to recall these memories with intense amounts of detail.
*Side note: you will learn throughout this blog I have five celebrity crushes, one of those being Mark Cuban. The other four are as follows: Aaron Rodgers, Stephen Colbert, John Oliver, and Eric Fisher- not to be confused with the Eric Fisher who plays for the Kansas City Chiefs. My guy is a national weather man, and if you followed his coverage of Hurricane Irene back in 2011 you would be in love with him too.
So when people ask me if HSAM helps me in school, the answer is not really. My ability to recall general semantic facts is the same as everyone else’s. I think sometimes people confuse HSAM with photographic memory, being able to take snapshots of things you say and pull them back up. My memory is more like if you were to replay a movie of your own life in your mind without the ability to pause the tape.
When I first learned about HSAM, I rushed to the one place I thought would have the answers: the DSM.
In my college abnormal psychology class I learned this was the diagnostic manual for all mental health disorders. As I flipped through the pages I saw Obsessive Compulsive Disorder, Autism Spectrum Disorder, Depression, Substance Use Disorders, you name it. But what was not in the manual was HSAM.
At first I thought HSAM may not be in the DSM because it is so new and so rare. But I have come to realize HSAM should never be in the DSM at all because it is not a disorder- it is an ability.
Watching segments on HSAM done by local new stations and interest groups around the world, I cringe when HSAM is called a “disorder” or a “syndrome”. Because HSAM is so rare, it is easy to label it as a disorder. But just because something isn’t normal to most people doesn’t mean it is a defect. I think reporters have chosen words like “syndrome” and “illness” without thinking through the consequences.
To my dismay, actual mental illnesses are still stigmatized in modern societies around the world. As someone who currently works in college health education I explain the stigma on mental health to my students like this:
The word “stigma” comes from the Greek word “stigmata”, meaning a mark of shame on a person. In the case of a mental health diagnoses, our culture has turned what was supposed to be a system to get people proper treatment for mental health issues into harmful labels putting different stereotypes on those diagnosed. People get diagnosed with conditions of all sorts, physical and mental, so medical professionals know how to treat them. A label simply makes this process easier.
However, we now have negative attributes we associate with different mental health diagnoses, like someone is “dangerous”, “lazy” or “unintelligent” because they have a mental health issue, none of these stigmas necessarily being true.
When people carelessly use words like “illness” or I have even heard “disease” to describe HSAM, it implies there is something wrong with me. It allows stigmas to be put on me because I live with HSAM. And although the stigmas are certainly different from the nine or ten common stigmas people associate with mental health issues, calling HSAM a “disorder” puts out the idea that having it must be a bad thing.
I have had people assume I hold grudges or I am always living in the past, when neither of these things are true. There were certainly times in my life where I have had trouble letting things go, but I have worked through them like anyone else would.
Along with this, a diagnosis of an illness implies that the condition is something you want to get rid of, to be treated and disappear. I do not want to get rid of my HSAM, it is part of what makes me, me. Now, I do have other mental health conditions that require treatment, and I do wish the stigma surrounding those would go away and that the illnesses would banish right along with it. But I want to stop everyone right here before we even go that far with HSAM.
HSAM is not an illness, or a syndrome, or a disease, rather it is an ability– maybe even a super one. And like all abilities, there are blessings and curses.
On Saturday, November 30th, the weekend after Thanksgiving in 2013, I sat in the middle of a packed movie theater in my hometown. My boyfriend, at the time, and I were seeing Disney’s new animated film Frozen.
I remember thinking about Elsa’s character for days afterwards. I felt as if I could relate to her somehow, but I was not sure exactly why. It occurred to me about a year later, after I found out what HSAM was, that Elsa’s powers in the movie were a lot like my own. We see at the beginning she is told to learn how to control her powers, but instead she quarantines herself because of her powers-thinking isolation equals control.
As I am sure others have felt if they have a loved one with a memory impairment of some sort like Alzhiemer’s or dementia, being the only one who remembers something can feel very isolating. Therefore, for a long time I felt very isolated having total recall abilities.
However, when used strategically, HSAM can be how you love other people. It can be used to remember someone’s birthday, anniversary, or someone’s achievement they are most proud of. I can remember the little details of what someone likes to eat or things a person enjoys doing, as long as I have experienced it with them.
We as humans pay attention to the things we care about, and when we give something our attention we have the ability to remember it. For me, remembering is my way of showing someone how much I really care.
At the end of Frozen, Elsa has her “aha” moment as she exclaims, “Love thaws!” and starts to bring back summer amidst the harsh winter she created. Much like the Snow Queen herself, it is through loving others that I have personally found my own memory powers to be more of a blessing rather than a curse.