SEVEN YEARS STRONG

Seven Years Strong
Trigger Warning: Medical Imagery, Depression

When I logged into Facebook in the middle of the first week of April, the memories feature brought up a post I hadn’t remembered: I’d written from a hospital bed that I was waiting for my first surgical procedure. The comments were filled with people asking what happened, if I was okay, and my responses were coherent but lacked their usual friendliness (and punctuation).

Seven years ago this week, I was a freshman in college who woke up one morning to find my left leg had swollen by three inches in circumference and was hot to the touch and deep purple. I assumed I’d broken it, hopped to class, and only went to the hospital when my favorite professor spotted me and told me I was so pale she didn’t know how I was standing. I sat in the emergency room for hours because no one thought it was anything serious, only to find myself whisked off on an hour-long ambulance ride after an ultrasound confirmed I had a blood clot that could have killed me quite easily.

I traveled to a larger hospital, had three surgeries, got some metal placed in my leg, and left. For many people, the story would end there with one simple point: I got better.

 But there were a great many more things that happened during my stay in the hospital that left a more lasting mark, one that wouldn’t show up on any scan. I wasn’t allowed to take my medications that help me bolster myself against the tide of obsessive thoughts that poured in constantly. I was awake for all three surgeries, and felt enough pain from the third that I vividly remember screaming for the doctor to stop until I blacked out. As someone whose OCD has always manifested the most strongly as emetophobia, I coughed up blood.

None of these things were the primary concern of the doctors who were working to save my life. They were on a clock - my left foot had no pulse when I came in - and they had to do what was medically necessary as well as follow their hospital’s policies even as I sank deeper and deeper into the depths of my mind, into places I never wanted to go.

I thought these memories would fade as time went on, like all the normal memories of my life. And for a while, that worked, even as I spent eleven months on a strict regimen of getting my blood drawn daily, my already-restricted diet restricted even more, and my friends not quite understanding why I suddenly wanted to just talk about blood and hospitals.

But two years after my sudden illness, I suddenly found myself plagued by near-constant flashbacks. I was back in that hospital every day, reliving every tiny little detail until I could recite a play-by-play of the entire five days. I jumped at every noise that reminded me of a beeping machine or an ambulance siren. I started having panic attacks over every sensation in my body. My heart raced for days; I stopped sleeping and eating and being able to be by myself. When the days and nights bled into each other, I wished for anything at all to make the pain of constant obsessive thoughts go away. I found myself in a deep depression, on the phone with my psychiatrist more than once a day, trying out a variety of medications and therapeutic techniques to help me get back to myself.

Just like with the OCD, I felt like I was alone. I didn’t know anyone else who had gone through an experience like mine at such a young age, especially when even the doctors were shocked to see how young I was. I didn’t know that, according to a survey conducted in Denmark, young people who live through a blood clot are twice as likely to experience mental health issues afterward (https://www.medicaldaily.com/blood-clot-diagnosis-doubles-risk-mental-health-issues-patients-younger-33-338232). I didn’t know that Clot Connect, the National Blood Clot Alliance, and the Blood Clot Recovery Network all include information specific to emotional health, depression, and flashbacks after the incident due to its suddenness and severity. I didn’t know that, when I felt a spike in anxiety immediately after the blood clot that went away shortly after, I needed to follow up to make sure I really processed everything that happened.

All I knew was that I was, once again, different, and that none of the techniques I’d used throughout my life to help with my OCD were any good against this new threat. I had to start from scratch with barely enough hope to survive at all, and far fewer allies than I expected to help me along the way.

The friends who sent me sympathy cards and gifts when I came out of the hospital turned away when I tried to tell them what was going on in my head. The rabbi who took such good care of me during my recovery was scared of me. To all my friends but one, I was a monster, even though I simply had an illness of the brain rather than the body.

My best friend who stuck by my side, my incredibly supportive family, and my amazing psychiatrist who I first met at the age of nine helped me find a way to survive. I spent what felt like forever working through exposure therapy to get me used to everyday stimuli that reminded me of the hospital and cognitive behavioral therapy (CBT) to help me get my thoughts back on track. It took me a full year to claw myself out of that deep depression and resume my ordinary life, and even now, I mourn for the happiness that was stolen from me in my junior year of college.

Now, seven years after my blood clot, I’m recovered, physically and mentally. There are some parts of me that will never be back to the way they were before, but seeing that Facebook memory this week made me smile instead of shudder.

Know why? I forgot.

I saw the Facebook memory seven years and a day after my ordeal had started, and I hadn’t even thought of it on the actual anniversary of the day everything began. I forgot the anxiety that plagued me for years. I forgot the date and looked at it as just any other day, and once I realized the step I’d taken without even knowing it, I decided to celebrate.

Seven years after I spent a long night awake sobbing in a hospital bed, I found myself in my favorite Chicago restaurant with a new friend I’ve made since moving, trying a new food and also enjoying some wonderful deep dish pizza. We played Pokemon Go, opened packs of cards, and shared plenty of laughs. It was an incredible celebration of the week I’ve dubbed my “healthyversary.”

It can be hard to celebrate this week as a time of health, but I want to make a point of bringing extra joy into my life during the anniversary of the two fiercest fights for my life. I didn’t come out of these experiences believing that everything happens for a reason, and I will never whitewash the pain I had to endure to reach this point in my life. But celebrating the little things, even if it’s as simple as forgetting the date I could have died so many years ago, is a way to celebrate unexpected strength and how far I’ve come out of a terrifying situation. Maybe it’s a sign of even better things to come!

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Clarifying Last Week’s Title: OCD Doesn’t Mean “So OCD”

When my mom read last week’s post, titled “Pokemon GO.C.D.,” the first thing she asked me was if I would be offended if someone else used that title. Was it too close to the phrase I hate so much - when people claim to be “so OCD” about everything from work habits to bookshelf organization?

My honest answer was that it depends on how it’s being used. When I thought of the title, I was thinking about how my clinically diagnosed OCD affects both my ability to make friends and my Pokemon Go play style. In a game with plenty of options from taking over gyms to doing raids with friends, I tend to do the same things over and over, just like I love listening to the same songs, reading the same books, and watching the same movies. I enjoy the way people in the community are very interested in pokemon, so I can talk about the creatures and the franchise for a long time without being thought of as boring or weird. That, in turn, helps me make friends to do these same activities with.

What I definitely didn’t mean is that my experience in Pokemon Go represents the gamut of all OCD has to offer. For every time my OCD has helped me focus on a thing I love or influenced a way of behaving in a fun activity like Pokemon Go, there are many more times it’s influenced me in a bad way.

Over the years, I’ve learned to be positive about the way my mind works and think of positive things it can do for me. It’s easier to think like that now that I’m in a place in my life where I’ve done away with most of the compulsions after many years of therapy and hard work.

All of that is so easily erased when people say “I’m so OCD about [insert thing here].”

When I hear someone say “I cleaned a stain off my stove today, I’m so OCD” or “I had an OCD moment today, I got so mad when my books fell over,” it trivializes the experience that I and so many other people with OCD are living with. OCD isn’t a moment, it’s a lifetime. It’s something I’ll never know life without, even if I’ve found so many coping strategies and ways to get through days that most of the time, people wouldn’t necessarily know by being around me.

When I called my last blog post “Pokemon GO.C.D.,” I was trying to avoid exactly this, and I hope you didn’t take it that way. I meant to talk about my experiences as a Pokemon Go player with OCD and make a pun along the way, but I don’t mean to say that my friends or any other players not living with OCD who keep spreadsheets about Pokemon Go and have very specific goals that they focus intensely on are “so OCD.” I prefer to not even use the word “obsessed,” if I can help it. Instead, I say that my friends are focused on their goals, very interested in organizing their pokemon a certain way, preoccupied with specific things, or have strong preferences.

Playing Pokemon Go in a certain way is something my friends choose to do for fun, not something that feels like it’s eating away at their sanity if they don’t have a specific pokemon doing the exact thing they want. It’s such a different story from the OCD that plagued my childhood that it’s hard to compare, and yet, so many people use the phrase “so OCD” to hyperbolize. It’s easy to say, like if I say “I have a million things to do today” when I’ve got a dozen items on my to-do list, but this kind of hyperbole is harmful and makes people with OCD feel two things that are very demoralizing.

First, it makes my struggle with OCD feel like a joke. If people can beat their “so OCD” moments so easily, what does it say about me that it takes me so long and feels so exhausting? It makes me feel stupid and incapable of doing things that other people find so easy. Second, and more hurtful, it isolates me from the people who believe this. If people are interpreting OCD to mean taking too long to choose an outfit, they are showing they have no understanding that it really means having to take a certain number of steps in each sidewalk square and worrying for hours if I do it wrong, or one of infinite other anxiety-provoking obsessive-compulsive thought patterns. It takes away a part of what might have been my support system and shows me that this is not a person to trust.

I don’t think people say this phrase malevolently. It’s an easy mistake to make, and it’s sometimes led to productive discussions where a new friend and I both learn from each other and our support and understanding of each other actually grows stronger. But in cases where people don’t want to listen or insist that I’m wrong about how to interpret my own brain, it’s divisive and tends to make me dislike a person based on their lack of willingness to be respectful.

I apologize if any readers took my title from last week the wrong way. I started this blog to educate people about living with OCD, and just like any other person, I make mistakes. I don’t regret using the title as I intended it, but I wanted to make sure to clarify exactly what I meant and use my potential mistake to educate just like I do with my successes. Thank you so much for following, and I look forward to sharing more with you!

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Pokemon GO.C.D.

On the night of July 6, 2016, I sat in my apartment, bouncing in my chair as I waited to connect to the newly released Pokemon Go server. As soon as I was in, I scanned around the room with my phone, and found my very first pokemon (Bulbasaur, the starter I chose in my childhood) sitting near my computer desk.

Almost three years and 20,000 pokemon later, Pokemon Go is a big part of my life. I have attended every monthly Community Day event, hatch eggs on the way to and from work, and spend many evenings and weekends trying to get every new pokemon as it’s released into the game. It’s something that never fails to bring me joy, and I find a special thrill in remembering and telling the stories of how I caught some of my favorite pokemon.

My gaming experience wasn’t always so positive. When I was a kid, my parents didn’t let me play video games. They knew that I tended to hyperfocus on things, and since video games were getting more and more immersive, they didn’t want me to fall into the clutches of games designed to keep people hooked. They finally started letting me play games towards the end of elementary school, and the first game I wanted to play was a series I’d learned about through watching the TV show: Pokemon.

Although it started as a solitary game experience, I discovered a Pokemon-playing community when I went to computer camp in the summer. In addition to the fun I had playing the game by myself, I learned that it was even more fun to play with friends. I had something to talk about with kids I didn’t know and it helped me make friends a lot easier than I usually did.

I also learned about kindness – after being the “weird” kid in school thanks to my obsessions and compulsions being too visible at a time with even less mental health awareness than there is now, I finally got to encounter generosity from my Pokemon-playing peers. I will never forget crying over my file of Pokemon Sapphire after losing my chance at catching Kyogre (a legendary pokemon of which there is only one in each game file), only for an older boy I never met to give me his, no questions asked.

I stayed aware of the cautions of gaming – it’s easy to spend too much money on games and even easier to spend too much time – and I worked my way up to being a steady gamer who also knew my own boundaries. I signed up for my first MMORPG (very immersive games played online that tend to be the ones that spark gaming addictions) against my parents’ recommendation at 18, and learned by trial and error how to find balance. Why would I sign up for a MMORPG considering their reputation, I was sometimes asked – and the answer was always the same. In those games, you play with other people from around the world, and I was using my game to find a connection to people who shared my interests that felt too weird for real life.

As an adult, I still find it hard to make friends sometimes, even though I no longer experience compulsions like I did. Now, just like in my computer camp days, Pokemon helps me make new friends and also find a community where it’s not only okay to hyperfocus – it’s actually encouraged.

I went to a Pokemon Go event the weekend I moved to Chicago, and quickly learned of a weekly meetup in my neighborhood to trade pokemon, My Sunday nights are now filled with pokemon trading and hanging out with new friends from all walks of life who come together to play the game.

What I find most interesting about the Chicago Pokemon Go community as compared to the community I played with before I moved is how intense the players here are. I’m actually one of the only people without a spreadsheet or a series of notecards prioritizing which pokemon I will trade for – if someone wants to trade with me, even if it’s not the best trade, I’ll do it, just like the boy at computer camp once did for me.

When I’m out at events, I’ll start a conversation with anyone I see with the game up on their screen, and it’s so different from how I usually am around new people. Instead of telling myself that I can’t come on too strong by expressing my interests right away, I feel enabled to talk more openly because I know they’re just as interested as I am – and I’ve used this as a way to become acclimated to a new environment. In addition to playing with my neighborhood group, I’ve used Pokemon Go to make friends at work, interact with people at mixers, explore Chicago, and more.

Pokemon Go has become a way for me to find a positive thing to obsess about, plus a community where this obsession won’t lead to me getting bullied or ostracized. As a kid, I was led to believe that playing games as a person with OCD meant that they’d take over my life and lead me to becoming a recluse who lived for nothing but the pixels on my screens. It’s been a wonderful journey to discover that I have the inner strength to resist that temptation as well as the ability to make friends by being passionate about things – something I specifically thought would hinder my ability to make friends throughout my life.

And speaking of friends, if you’re looking for new Pokemon Go connections, please feel free to send me an invite! My friend code is 3073-2651-9207. 😊

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

WHAT DOES BRAVERY LOOK LIKE?

What Does Bravery Look Like?

Trigger Warning: Medical imagery

When I was little, I always wanted to be brave when I grew up. (And an author, of course.) Bravery, to me, meant what I saw in the movies - people doing daredevil feats, climbing mountains, bungee jumping, and being unafraid of the everyday things that scared me so much. Even petting a dog or trying a new food seemed like an insurmountable amount of bravery.

Over the years of living with OCD, I’m slowly learning that bravery can take many different forms, whether or not I see it in myself.

This past weekend, I was forced to be brave in a way that I’ve had to deal with since I was hospitalized seven years ago for a potentially fatal blood clot. Thanks to the medicine I’m on, I can start to bleed severely at any time. One of those (thankfully infrequent) times was this past Friday, when a small injury turned into an alarming amount of blood. I could feel my heart pumping in my chest as it just kept coming and coming and coming - and nothing I was doing to stop it was working at all. My thoughts raced along with my heart and I couldn’t help but think, in those first few moments, that I was the worst coward who ever lived.

It was then that I thought about what Mom said when I first got out of the hospital all those years ago. She got me a card with Wonder Woman on it and wrote inside that I had been so brave.

 I was shocked when I read the card. How could I be brave when I was little more than a crying mess for the entire time? How could I be brave when I was afraid of every little thing from beeping machines to drinking the tap water? How could I be brave when I tried to kick a nurse whose job it was to wake me up for a midnight blood draw?

Mom explained: then, and this weekend, I was brave because I kept going. I had the option to drop out and lose a semester and take more time to recover, but I didn’t. I had the option to not do the surgeries and risk permanent disability for the sake of my fear, but I pushed ahead, even knowing I would have to do at least one surgery while awake. No matter what happened, I did my best to keep my spirits up and I took all the steps I knew to do.

I did the same thing this weekend. I rationalized my actions in my head instead of running around like a chicken with its head cut off (my favorite metaphor for when my thoughts run amok). I may have talked out the steps to myself, everything as simple as finding clean towels and warm water, but I did it. I also knew to do the other things that would get me off of the peak of anxiety: I called my family, wrote to my best friend, cuddled up in a soft outfit and started playing a calming video game. Even as I took breaks in conversation to exclaim that the bleeding still hadn’t stopped, I quickly returned to the distractions I had created for myself.

I’m starting to recognize bravery in actions like the ones I did last weekend. It’s not the same thing as holding a giant iguana or ziplining (two things I’ve also pushed myself to do this past year), but it’s bravery nonetheless. I knew what was coming, and I did it. No matter how afraid I was, I did it.

I see that kind of bravery in my friends who also live with mental illness. Whether it’s the bravery to do a job interview with social anxiety or join a social group with autism, it strikes me that the people I know find ways to make every day a new opportunity for courage. While I hope I don’t have too many opportunities to prove my strength in situations like this weekend, I do know that my life with OCD so far has prepared me to fight for the kind of bravery I am good at, and to learn to see that as a positive about my diagnosis.

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

THE PRICE OF MENTAL STABILITY

The Price of Mental Stability

Trigger Warning: Medical imagery

The price of my mental stability is $250 a month.

It can be hard to put a price on things like this, but my case is clear. It’s the difference in costs between two medications that achieve the same purpose for the same physical illness I developed seven years ago. Both treat the symptoms in similar ways, but there’s one huge difference that means I can’t take the cheaper clinical alternative.

I was given the original medication along with a packet of blue paper. I can still remember how many sheets there were, straining the staple as I flipped through them. These were no ordinary instructions. These were restrictions on what I could eat - no leafy greens, and I’m a vegetarian. I had to take the medicine at the same exact time every day and not eat for an hour before or half an hour after. I had to get blood draws to even know how much to take, and the doctor would tell me what to do each day. There was also a list of how to know when things went wrong, and all the tiny little conditions that meant to go to the ER immediately, or else.

Instructions like these are probably meant to cause some kind of comfort to patients - if you follow these rules, you won’t get sick again. But for me, it took on a whole other meaning.

Thanks to my OCD, I tend to see all the possibilities of things. Sometimes, this can be a good thing, helping me to find the good in a negative situation. But here, all I could see was this huge list of rules that had to be done completely right. What if I took the pill at 5:01 instead of 5:00? What if I forgot any of the rules? What if I ate a potato chip before dinner? And what if that chip then somehow ruined the blood value for the dose I was supposed to take, and I took too much and bled or too little and died?

And that was just the aspect of things I could control - I also might have symptoms that terrified me because of my obsessive relationship with my digestive system for no reason at all, and all the sticking to the packet in the world couldn’t keep me safe if I had something like that. All it took was one memory of the horrifying taste of blood for me to become completely, utterly terrified.

When I started the medication, it was a daily ordeal. Not only did I have to keep the rules, but because my numbers were never consistent, daily blood draws became a part of my life. I had to enter an environment I was terrified of every day, and be in pain and fear every afternoon until the doctor would call me and tell me my dose. Then that would feed into the fear that I was cutting the tiny pills wrong, and what if I had half of one instead of a third, and did the little dust on the pill-cutter count?

The blood draws thinned as time went on, but the fear and obsessions lingered. I begged for an alternative, and when I heard about a new drug that was in FDA testing, I told my doctor to call me the minute it was approved for use.

Eleven months after I got that blue packet, I was finally able to take a pill with no restrictions. No blood draws, no counting, no timing. This pill was, medically, the less safe option. It didn’t even have an antidote at the time, which meant that paramedics couldn’t do much of anything if I was bleeding too much for any reason. But I gladly made that trade, so that the life I lived could be the life I loved from before any of this happened.

The new drug has no generic version, and won’t for years. It’s very expensive, even with insurance and the manufacturer’s discount card. The other option costs a pittance, if that. But there’s nothing I can do.

I know myself well enough to know that I can’t do something that regimented. I know this lesson in many ways, like when I’m trying to lose weight, I know to not count calories. I know to not fall into traps like these because of how hard it is to claw my way out. And so, I pay.

I pay the $250 not because I want to be difficult or don’t respect the money I earn, but because I prefer living my life without having to fight every single second for a shred of happiness. I know what that feels like, thanks to a prolonged mental health crisis where I dealt with the trauma of this illness and its recovery years after I left the hospital.

I pay the $250 because I don’t know how to tell an insurance company that yes, there are technically other options, but even the thought of going back on the first medicine made me start to cry and wonder if I had the strength to make it.

I pay the $250 because after experiencing a crisis like that, I’d gladly give my entire bank account to avoid having to deal with unending panic attacks and flashbacks and depression that sucked away everything good about my life.

I sometimes wonder about the people who can’t afford to pay the $250, or however much it might be for them. I wonder if they find ways to get used to the pain over time, or if they simply fall deeper into despair. I hope for their sake and mine that one day, mental health will be a valid reason to switch from one medication to another, especially in cases like mine where I was able to find research that 1 in 3 people facing my illness would also face a mental health crisis within the following two years.

To me, this is a reflection of the secrecy and shame around mental health. It’s not easy to use my OCD as a reason to make one choice over another, especially after I’ve been conditioned to believe that doing anything based on OCD is wrong. It’s not easy to explain things to doctors and pharmacists and insurance companies. It’s not easy spending the money that I could be saving for my future.

But for me, it’s no choice at all. I need to advocate for myself, to do what I know is right for me. I need to be able to eat salads at 5:00 and keep my blood in my veins where it belongs. I need to not be in a hospital environment that breeds flashbacks. And that means I need to pay this price for no reason other than the chemical production of my mind, so that I have a real chance to be happy and healthy.

And isn’t that what any medicine is ultimately for?

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.