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.

THE THRILL OF ROUTINE

The Thrill of Routine

For many people, routine is boring, something that they look forward to getting away from on a vacation. But for me, my favorite vacation each year is one that is choreographed from beginning to end, with only the slightest variations.

 My parents and I will leave the house early in the morning, and I’ll take a Ziploc baggie of cereal in the car’s cupholder for later. We’ll pick up my Nana, who will bring her breakfast in a leftover goody bag from my bat mitzvah, and then I’ll eat and nap, probably until we stop at a Subway in the middle of Alabama for lunch. I’ll stand in the sandwich line with Dad and get a custom veggie sub and have an internal debate about whether or not I should be eating potato chips. We’ll drive the rest of the way, and I’ll know every road, every rest area, everything between home and the small town in Florida where we’ve spent a week every year for almost half my life.

We stay in the same condo. Our mornings begin with the same walk on the beach and gruesome discoveries of dead jellyfish. Our afternoons are divided between a number of places we’ve visited for years, and the only thing I don’t know is which place we’ll visit on which day. In the evening, we go to one of our favorite restaurants where none of us even need to look at the menu, and one night we even go to my favorite French fries place I’ve ever experienced. (No one there minds that I eat them with a fork, and I even get a toy alligator just for showing up!) I collect the alligator toy and buy the same thing from the gift shop and after, I go with my family to bookstores and other calm places before we eat at our favorite ice cream place.

The trip is extremely predictable. I haven’t even left yet and I could give names and locations of everywhere we’re going and everything we’re going to do. And I absolutely, positively love it.

I didn’t realize these traditions were intrinsically tied into my OCD until we had to make some major adjustments to the vacation this year. It was really hard to delay it by two and a half months - we usually go the week of Christmas, and there are several traditions like cooking when the restaurants are closed and looking at light shows and shopping at holiday sales that we won’t get to do this year. I felt down all that week, thinking about where I should have been as I spent my holidays alone.

I was only just starting to acclimate myself to that change, promising myself the same vacation but a couple of months later, when my parents suggested shortening the trip by a couple of days. Without even a moment going by, I burst into tears, thinking the trip was really, truly ruined.

After figuring out vacation days with Dad, we were both able to take the time to do the trip I wanted. I’ll even be coming home a day early to spend time with my sweet dog. As much as I could, I took what I could get and am now counting down the days to the trip that I already know head to toe.

Once the plans were booked, I spoke to my parents about it, and realized they were a little surprised about my reaction to the changes. After all, I’m in my 20s, and I just moved across the country to a place I’d never even seen to start a new job without knowing anyone in Chicago. I even managed to go far away for college after never having lived away from home as a kid, not even for summer camp.

I’ve made major changes in a lot of areas in my life, and yet, there’s still something in me that needs some things to stay the same. It’s why I feel comforted when I’m watching my favorite movies, the extended Lord of the Rings trilogy - I know every bit of music, every line, everything that’s going to happen, and I take comfort in that stability.

There was definitely a part of me that knew that we could have cut the trip by a day or two and nothing major would have changed - we would have done our same things, and we wouldn’t have had as much time laying around and maybe even getting bored. But at the same time, I needed it. I didn’t know how to express that it was an OCD thing, or maybe I was just too ashamed at the way I got overwhelmed so fast at just the thought of cutting the trip short. I don’t need the comforts I did as a kid, like asking the same question over and over to hear the same reassuring answer. There are a lot of OCD-related things I’ve given up as I’ve gotten older, but some of them, like my need to keep certain things the same, will probably always stay with me.

At a time when I’ve had a lot of changes in the last few months, I take comfort in my favorite music, movies, and books. I’m trying to accept this part of myself and minimize my shame, but it’s hard to do in a world where mental illness is seen as bad, weird, and just plain undesirable. But it is an undeniable part of me, and it also gives me a ton of joy on trips like our yearly Florida vacation. I don’t get bored of seeing the same things; instead, it gives me new pleasure every time, as well as a warm and comforting sense of home that’s hard to get at a time in my life that’s full of changes. For me, learning to see that positive side of things is what has helped me get rid enough of the shame to share this story with you, and hopefully to work on sharing more. It’s only in a world where misunderstood behaviors are understood that people like me will really, truly be accepted.

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.

FINDING PRIDE IN MY PASSIONS

Tomorrow, I’ll begin my second year of participating in Back to Middle-Earth Month, an online challenge that brings together people from across the Tolkien fandom to create new works celebrating his. When I talk about it, some people assume that I’m automatically going to sign up because they know I’m a nerd and Tolkien’s world is my absolute favorite.

What they don’t know is that I didn’t used to be open with people about this - and I actually became a Tolkien fan at age nine, farther back than I’d admit to most people.

I still remember the day I first discovered it: I was laying on the couch, entertaining myself with a comic book on an otherwise unmemorable weekend afternoon. Dad was watching Fellowship of the Ring, which was in my young (and uneducated) mind the nerdiest thing in the universe. He always tried to get me to watch science fiction movies with him, or fantasies like this one, but I was never interested.

Somehow, he got me to look up - and the second I saw that first clip, I was completely captivated. I watched the movies in record time and soon moved on to the books and to peppering Dad with a thousand questions about obscure bits of lore.

In the beginning, things were perfect. I felt like I’d fallen in love and nothing could bring me down. But then it was brought to my attention that I was obsessed with Lord of the Rings.

Even now, after so many trials with OCD, I still bristle at the word. When I was a kid, I was even more sensitive about it, and I realized that my new hobby must be something to be deeply ashamed of. And my joy soon turned to horror as I thought of what was under my bed at that very moment.

Shortly after finishing Return of the King for the first of many times, I had started writing fanfiction (although I hadn’t even heard of the term) inside a marble notebook that I kept in a drawer under my bed, right next to my diary. Paint chips representing the colors of outfits, horses, and decorations were glued meticulously into the notebook along with notes I wrote on pieces of scrap paper, napkins, and even the occasional tissue. It turned into a marvelous scrapbook of ideas, a cornucopia of inspiration.

With this new shame, I became determined to ensure no one would ever find out what I was doing in that notebook. I started writing in a code that became so convoluted that even I forgot how to read it after a while. And still, its presence haunted me - until one day, I went into the kitchen when I was home alone and took a pair of scissors and shredded all the pages I’d used, leaving an empty husk of a notebook cover behind.

For many years afterwards - almost a decade, in fact - I kept all of my fanfiction ideas in my head. It was easier than trying to explain to myself or anyone else why I was doing something so weird and still loving it even through all the guilt and shame.

Then, at seventeen, I discovered fanfiction websites. I finally had a laptop of my own, and I was able to browse the archives to my heart’s content. I saw what I had never seen before: a community of people who were also so focused on the same thing as me that they could write these stories for years, amassing thousands of words of fiction about their favorite characters.

It took me a few more years to actually write some fanfiction of my own, but once I started last November, it was such a thrill that I haven’t gone back. When people encouraged me, I read the Silmarillion and then discovered that some fans had spent years debating the finer points of the mythological book even many Tolkien fans call too intense.

 These people were extremely focused. Obsessed, for lack of a better word. These people were like me.

I dove headfirst into the fanfiction scene, and ever since then, I’ve been writing it as often as I can. And once I started getting a few kudos online, I started to tell people in real life about it. Explaining myself, my ideas, my shame, my freedom. And it felt wonderful to give my mom, who I had once hidden the notebook from with such desperation, the link to my first online story. She was also there taking pictures when I debuted my first cosplay of a Tolkien character and appreciates the photos I took with several of the films’ actors at a convention this past year.

It’s been a long journey to take pride in my passion for Tolkien’s work. This month, when I celebrate Back to Middle-Earth Month, I’ll post what I’ve written openly rather than shredding it. I’ll tell my friends, family, and even my new coworkers about what I’m up to. I’ll try to be as open as I can, even if others judge me, because I have watched that stigma lessen before my eyes and have hope that other stigmas can too.

As a kid, it was hard for me to even say the names of the characters I loved out loud, afraid of being ridiculed. I’ve gone from that to marching down the street in a cosplay parade, wearing elf robes and waving to the hundreds of people lining the streets. All it took was the kindness of fellow fans and acceptance of the people who didn’t quite understand why I was so passionate about Tolkien, but were willing to be kind anyway.

 I take pride in saying that I’ll be writing Tolkien fanfiction throughout the month of March. Hopefully, one day, I can be as open about other things - but for now, it’s time to hunker down with my writing prompts and prepare for an amazing month ahead!

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.

SHANE'S BLUE HENS: AN UNEXPECTED MEDIA REPRESENTATION

Trigger Warning: Suicide

This week, I started playing Stardew Valley, a farming simulator game available on the Nintendo Switch and PC. I knew from past experiences playing games like this that it would be all too easy to sink into the repetitive tasks, watering crops and taking care of animals and giving gifts to villagers until I could fulfill whatever oddly specific goals I would come up with. It’s how these games usually go, and I tend to keep an interest in games like these long after my friends have moved on to games with more varied gameplay.

In this instance, I was very surprised by the presence of a mental health journey, which was explicitly called out as such and made a part of the gameplay. It’s something I’ve never seen before, even after being a gamer my whole life.

This story centers around Shane, who is living with his aunt and goddaughter on a neighboring farm to the player’s. At first, he is completely unwilling to talk and open up, dismissing communication with rude remarks and pushing everyone away, including those who he cares about. He lives with alcoholism and doesn’t hesitate to drown his problems in beer at the local saloon, and he seems to have little more going on in his life than a dismal job at the local supermarket.

It would be easy to ignore Shane considering he doesn’t seem to want much interaction, but I became determined to befriend him to earn the exclusive ability to purchase and raise blue hens.

The relationship started slowly, his rudeness decreasing in extremely gradual increments as he began to open up. One night, he shared a beer with my character and began to discuss things that mattered to him. On another rainy night, my character found him at an absolute crisis point. (Spoilers for Shane’s 6-heart event below.)

My character, a farmer named Annie, finds Shane nearly passed out drunk, mumbling to himself on the edge of a cliff. He sees falling off the cliff as the only way to take control of his life, and to “dull the feeling of self-hatred.” He asks why he shouldn’t roll off the cliff right now, and the player then gets to choose from several different responses.

I chose the one I heard from my family when I asked a similar question years ago after a crisis of my own: that there’s so much to live for. He puzzles through it, voicing his thoughts and fears aloud. And then, Shane asks Annie to take him to the hospital, beginning to see the first inkling of hope.

The doctor tends to the physical effects of his overindulgence before recommending him to see a counselor, specifically using the words “I’m most worried about his mental health.” Never before have I seen the words “mental health” in a video game, and I was shocked to see that the doctor didn’t just sweep the mention of his suicidal thoughts under the rug for the sake of the player.

As the days go by, Shane goes to see the counselor and begins therapy. He slowly gets better over time; in a later scene, he chooses sparkling water over beer, and uses the money he would have spent on beer to buy his goddaughter a special gift. He also rediscovers his passion for taking care of a flock of blue hens, which he offers to share.

Only by experiencing this journey can any player unlock blue hens, which means even people who wouldn’t be inclined to look into Shane’s depression will still share this journey with him, even if only for the reward.

Watching these scenes reminded me of tough times in my own life not too dissimilar. I was never on the edge of a physical cliff, but mental ones have presented hurdles that are just as foreboding. Five years ago, when I was mired in the deepest mental health crisis of my life so far, I think it would have been comforting to see that other people were dealing with thoughts like these, and they could get help too.

Mental illness can be extremely isolating. Even with people who try their best to understand, it still sometimes feels like you’re the only person in the world who has to deal with what’s in your mind. Shane’s story was particularly meaningful to me because when I had thoughts of suicide, I felt like every time I shared them, I lost another friend, another acquaintance would look past me, another person would get scared off even before I had time to explain that thoughts are different from actions, and I never had any plans to do anything. Showing a scene like this could have helped me express my thoughts better at a time when I felt like my brain wasn’t working right.

As for Shane, he is now a proud husband and father who still has some depressed thoughts, voicing them to his wife Annie from time to time. But they’re peppered in with happier things, giving him the variety he needs to thrive.

The game is full of stories like Shane’s, just like in real life. But unlike in real life, they’re brought out into the open, leaving room for learning, hope, and positive change. With more exposure like this, people dealing with all sorts of mental illnesses can have a springboard to discuss this topic with friends and loved ones, and for once not feel quite so alone.

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 COMPLICATIONS OF VALENTINE'S DAY FOOD

Chocolate or vanilla?

Most people know their answer to that question right away, and most people celebrated Valentine’s Day with the sweets of their preferred kind. For me, however, it was a frustrating experience that shed light on something I usually try to avoid.

As someone whose primary obsessive phobia is vomiting, I grew up as an extreme picky eater. Only in the past several months have I truly been able to eat in a more conventional way, even though I am still unwilling to try meat or fish. I’ve been mixing foods together, something that was always hard for me as a kid, and I’m also trying lots of new foods, including cuisine from around the world.

The one thing I never had a problem with was dessert, at least until I was diagnosed with a severe allergy to nuts. As a kid, I knew I had the allergy and avoided nuts, but because of how I expressed this knowledge, it was hard for the people around me to believe it until I experienced anaphylactic shock. Now that I know what that feels like, I’ve gotten more paranoid about the foods I eat, which makes a previously uncomplicated area of my eating life quite the burden.

On Valentine’s Day, many people eat sweets. I’m a chocoholic, and I love just about every kind of chocolate. Other flavors, however, can sometimes come off really strong. I have a strong sense of taste, and it can be hard for me to overlook a different flavor when I’m the kind of person who can tell the colors of peppers and Goldfish crackers apart by taste alone.

My new workplace is the kind of place where people really, truly care, and they try their hardest to provide an option for me to eat even though I’m the only nut-free person there. On Valentine’s Day, I got an email that there were going to be nut-free desserts at the office party. I went and checked it out, picked up some different flavors and thanked my coworker profusely.

I appreciated it with all my heart. But at the same time, I wished there was some way for me to say that there are some foods that I just don’t like.

The same thing happened to me for my birthday not long ago. It was so considerate for people to think of me, and to accommodate the allergy they know about and the OCD they don’t. But it was still hard for me to pick at the food and smile and squeal over it when really I was thinking about the chocolate cupcakes that had a risk of nut contamination, the ones everyone else but me could eat.

I ended up leaving the room after a long period of awkwardness, internally chiding myself for having preferences. After all, how can I say that I just don’t like something, if it fits the requirements of both my OCD and my food allergy?

I feel like I don’t have the right to express a preference in food in these situations for many reasons. Saying I don’t like something makes me feel selfish, or like I’m hurting others on purpose. As a kid, I wouldn’t even put the food on my plate, and I had a lot of excuses for it - if I was with non-Jewish friends, for example, I’d simply say that the food wasn’t kosher, and that was enough to confuse most kids into just letting me do what I wanted. As an adult, I tend to find some way to flee, all the while beating myself up on the inside.

Why can’t I just eat these things, and pretend to like them? I wondered as I sat at my desk picking at a vanilla cupcake with overly sweet frosting, a kind gift yet one that I was having trouble actually swallowing. Of course I thanked my co-worker immensely for thinking of me and getting me something nut-free, but there was some horrible part of me that almost wished she hadn’t, if only to avoid this feeling.

I find that adults can be very skeptical and un-accepting of the times I don’t eat something not because I can’t, but because I don’t want to. At my old job, a coworker once started reading me all the ingredients of things off of the menu and asking me about each individual one until I bolted for the bathroom, staying there until I knew the conversation would change focus. I’ve been asked all kinds of questions, everything from what kind of diet I’m on to why I’m being difficult, and people often don’t stop until I repeat several times that I’m happy with what I ordered, even if it’s just a side dish.

Until recently, I would declare I didn’t like a food before I even tried it. Now, I have a rule that I give myself three tries. There are several foods that have failed my test: pasta salad, quinoa, mushrooms, mixed greens, farro, and more. It’s not that I obsess about these foods, and I can even eat foods that have been around them. And it’s not that they could hurt me because of my allergy. It’s just that I honestly don’t like them, and I find myself at a loss for words whenever anyone asks me why I’m not eating.

I’m still trying to work my way through this problem. I don’t know if it’s a lack of confidence to express my preferences, a sense of shame for not being able to fully accept the kindness of others around me in the times when I do receive it, or some combination of both. It might be a fear that others will think of me as difficult or, like a waitress told me in front of my coworkers last year, that I’d be judged as a “picky little kid.”

For now, I’ve got a makeshift solution: politely accept the food, smile as much as I can, pick around it to make it look like I ate, and dispose of it in a place where no one will see or know. But I can’t fake the enthusiasm I have when there are chocolate nut-free cupcakes or some other food I really, truly love. It’s something I have to work with every day, and something I hope I can either overcome or learn to live with in a better way. But for now, I’ll head to my drawer and enjoy a treat of my own that I brought for the occasion, and I’ll try to treat myself with the kindness of my coworkers this Valentine’s Day.

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.