SAVED BY STORIES

Saved By Stories

On Tuesday night, I watched Stephen Colbert interview the director and lead actors of the new movie “Tolkien” after a preview screening. I watched live as they all shared their stories of discovering a love for Tolkien’s works. Each discussed a different circumstance in their lives that led them to finding themselves in the books and movies, and Colbert summarized it quite nicely: he was “saved by stories.”

I won the ticket to this screening in a Tolkien trivia competition. I arrived alone, sat at a table with total strangers, and formed a small team. As the rounds went on, our little group floundered against the early frontrunner and best contender, a team more than twice our size. But we were determined. We closed the gap, formed a tie, and made it through the rest of the game plus three tiebreaker rounds before our victory.

It’s very rare that I feel as thrilled as I did that night. It’s not just that I was able to talk about my longest-lasting positive obsession, or even that I could prove my knowledge as someone who, thanks to my sex, has been questioned many times over whether I can be a “true nerd.”

What mattered the most to me that night was how people looked to me not as a source of random and useless facts from a world that doesn’t exist, or as someone whose obsessive thoughts make me strange, but as someone whose knowledge and passions mattered and could take me far. As the game got more heated and the questions got harder, I got shy about writing down answers. I thought I was looking too intense to my teammates, that they might think I was some sort of weirdo and not want to associate with me even if I could get the questions right.

I hesitated until one of my teammates encouraged me to just write down what was in my gut for the answers. He said that no matter what happened, he trusted my mind - and the others quickly joined in. Pencil flying over the paper, I was thought of as cool for remembering how to say “hobbits” in Sindarin (periannath, if you’re curious) and the process from the Silmarillion of how balrogs became balrogs.

After the victory, when we milled about the bar hoisting our prizes and eagerly chatting about the upcoming movie, I couldn’t have been happier. I showed every bit of knowledge I usually hide because I think it makes me seem strange, and people actually appreciated it and liked me for it. It was incredible, and the feeling resurfaced at the end of the screening, when the interview began to air.

Stephen Colbert recited poems from the books - Bilbo’s walking poem included - to general astonishment and applause from his audience at the Montclair Film Festival. It wasn’t strange that he had so much memorized or that he spoke in such depth about how the books helped him through his darkest times. It was brave, admirable, and all too familiar.

Losing myself in fantasy worlds and finding myself in them was the greatest pleasure of my childhood. Books took me away from obsessing over germs in the air or on my hands or already inside of me. They took me away from the times I was hungry because it was so much easier to not eat than to face my OCD head-on. They took me away from a life where adults who took pity on me were my only friends and brought me to a place where all sorts of people came together, no matter their past, and won.

No matter what happened, they won. It didn’t matter if they were facing a small skirmish or the war to end the Third Age, or clinging to the slopes of Mount Doom with nothing but hope and friendship. Sauron’s tower of Barad-Dur falls. The heroes win.

In all the times I’ve felt hopeless when faced with a life with OCD - even now, as I’m succeeding in keeping obsessive thoughts at bay, I know there will be times in the future when I relapse as I have before - Tolkien’s stories inspire me. And I was even more inspired to watch my museum experience come alive in the movie and see Tolkien’s life through his eyes, the incredible love and horrifying war that I can’t help but find in his works.

It’s my dream, one day, to do something similar - to turn pain into prose, to use stories to help others not feel quite so alone in their heads. And in the meantime, I’ll keep rereading and rewatching my favorite stories, starting with a rare edition of “The Two Towers” I was able to find in Hebrew.

Like Stephen Colbert and his interviewees, I was saved by stories. If the price of this is a passion that makes me jump for joy, I’m thrilled to find I am less ashamed of sharing it as time goes on. Just as I’ve found the stigma of nerdiness decreasing, I hope that one day, I can share more about my life with OCD openly and without shame or fear of losing respect or friendship.

In the words of Samwise Gamgee, the books and movies couldn’t carry my burden for me, but they carried me - and I’m proud to carry the passion and happiness they gave me forward into my life as a writer and beyond.

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.

AWARENESS ISN'T ENOUGH

Awareness Isn’t Enough

Thirteen years after my diagnosis, I told a friend about my OCD for the first time.

I was sitting on a bus with some new friends on a teen tour, listening to a fellow trip participant as he described what growing up with Asperger’s was like for him. I uttered the words “I have OCD” for the first time then, half expecting a sudden thunderclap or bolt of lightning to remind me that such things were not meant to be discussed.

Instead, I was listened to and respected. It was strange how this made me feel more included than anything else on the trip, especially when I’d believed throughout my childhood that admitting to my diagnosis meant never having a real friend.

It was my first step to trying to be more open about my life, which I’d always avoided out of fear and shame - the powerful stigma surrounding mental illness. I didn’t know anyone else who lived with mental illness, and even though some members of my family told me they were anxious about things too, it was never quite the same.

I was reminded of this moment at a seminar earlier in the week focused on destigmatizing mental health. The presenter began by sharing her story before asking if anyone had questions. I was surprised at how many people opened up and were able to ask about themselves and the people in their lives who they wanted to help. It was so encouraging to see how people could talk openly without any shame, whether they expressed their concern over a friend’s well-being or shared their experience of going to therapy or taking medication.

A personal connection seems to be the key that opens so many doors. It works better than anything else I’ve seen, and it’s why I share my story here and with my friends and family. It’s even how I got close with my best friend - after we met at a Pokemon game tournament, I knew we had common interests, but it wasn’t until they took out a bottle of anxiety medication at dinner and offered an explanation without batting an eyelash that we truly began to bond.

These moments are what I think of when Mental Health Awareness Month rolls around each May. The word “awareness” trips me up - as someone who was diagnosed before I can even remember, I’ve never known a life without OCD. By default, it’s something I’ve always been aware of. But there’s a big difference, for me, between being aware of something and actually doing something about it.

As a child, my only awareness of any kind of mental illness besides OCD came from lists in textbooks, with words like bipolar and depression and autism thrown around with no deeper meaning beyond what I needed to study for a test. It wasn’t until I met people with these and other conditions that I began to really understand what sorts of things people lived with, and even though I couldn’t understand the intricacies of what was going on in their minds, I began to have sympathy for situations where they behaved in atypical ways that others considered weird or annoying. And even with my own experience, I was still surprised to hear the different ways mental illness manifested in different people. Even with awareness of my own life, there was - and is - still so much I didn’t know.

I could list facts about mental illness for school, but I couldn’t say why it was so hard for a friend with social anxiety to go to an event she wanted to go to. I knew from school that autism and Asperger’s were often talked about in the same context, but I didn’t understand why some of my friends felt strongly that they wanted to identify as one or the other, and were offended when people got it wrong. In other words, I knew mental illness existed, but aside from living my own life, I wasn’t doing anything to get rid of the stigma that has felt so oppressive for so many years.

Learning the facts about brain chemistry and acknowledging that mental illness exists are definitely important steps, but expressing this knowledge through compassion really changes things. Listening to a friend in need, supporting someone in even the simplest way, and sharing stories of mental illness can make an enormous difference towards breaking down the stigma.

I think my session this week would have gone completely differently if the presenter hadn’t shared her story about depression. My own life would be a lot more isolated if not for the people who shared their stories with me and helped me feel safe to open up. Hopefully, this blog can be another step in the long but very worthy journey towards destigmatizing mental illness.

This year, during Mental Health Awareness Month, catch up on the basics. Get an idea of what mental illness is, and maybe even learn some facts or statistics. And I also hope you’ll find a way to learn more stories, whether here at No Shame On U or with your friends, family, co-workers, or acquaintances. Consider sharing your experience as either a person living with mental illness or an ally - you never know who you’ll inspire to make a change, and who they’ll inspire in turn.

It is in this way, rather than simply being aware, that we can truly begin to smash the stigma and create a world where no one’s lived experiences are out of bounds for discussion.

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.

A PICKY EATER'S PASSOVER

A Picky Eater’s Passover

Time for a secret: I have never fully kept Passover.

I go to both Seders, and usually, I lead my family’s prayers and love our traditions. I enjoy retelling the story and am always up for watching The Prince of Egypt even though I’ve had the songs memorized since I was a kid.

But that’s where it stops. Unlike most Jewish people I know, I do not keep the dietary laws of Passover.

The main way that my OCD has manifested over the years is extreme food pickiness thanks to emetophobia. I joke that I eat like an overgrown toddler, and there are indeed many elements of toddler eating habits that make their way onto my plate: I tend to separate foods (no milk in my cereal), I prefer the same foods over and over, I need convincing to try new foods, and my repertoire of things I eat is very limited.

It was a big thing that set me apart from my peers, which was what bothered me the most about it. As a kid, I wouldn’t eat pizza, mac and cheese, chicken nuggets or fish sticks, nor would I drink soda or fruit juice. I wouldn’t eat lunch, choosing to be hungry rather than eat what my school had for offer. This was noticed, pointed out, and ridiculed, but still, I couldn’t get rid of my anxiety around trying new foods.

This didn’t change when Passover rolled around. Each year, as I practiced the prayers and listened to my parents and other adults complain about giving up bread, I felt immensely guilty. I couldn’t do it. As someone whose diet consisted solely of plain bread products until I was fourteen, I was simply unable to cut chametz (leavened bread) out of my diet for eight days.

I was thankful that my family’s Seders were small, so that only my parents and Nana could see me eating pasta while avoiding eye contact with the Seder plate. I snacked on matzah to try to participate, but all of my major meals involved leavened bread.

For a long time - and still, to an extent, today - I felt like a bad Jew who was disrespecting the holiday. During the Seder, the stories I loved to read aloud all led to eating of matzah instead of bread, and I couldn’t even make it through the first dinner without my OCD ruining everything. I couldn’t be like the other kids I knew who would substitute meat, veggies, and more for the bread in their diets. I just couldn’t.

Over the years, I slowly got better at trying new foods. Sometimes, the progress was slow - a dollop of tomato sauce on a big plate of pasta, spread out to the point where I could barely taste it. Other times, it was overwhelmingly fast - a friend sitting on top of me so I couldn’t move as she pushed a slice of pizza in my mouth. In college, where I had the option to try a little bit of different things in the cafeteria, I learned to like orange juice, granola, and salad.

Although I’ve wanted to make a more major change to my diet for years, it’s only in the last year that I’ve felt ready to take a bigger step. I’d gotten to the point where I don’t panic as much when I’m faced with new foods, and my desire to eat like a “normal” person felt stronger than the nagging thoughts at the back of my mind telling me a new food could make me throw up.

Nine months ago, I started a journey of exposure therapy to get me used to new kinds of foods. I worked with a nutritionist who helped me learn about different kinds of foods that I never knew even existed, and she helped me find ways to get around the roadblocks in my way. I learned how to put foods of different textures together, add a new ingredient to a familiar dish, and more. I tried some new foods on the phone with my parents or a friend. I became determined to try each new food three times, and only say I didn’t like it after not liking it all three times.

I’m not quite at the place where I can have a true chametz-free Passover like I eventually want. I’m definitely limiting my consumption of leavened bread a lot more than I was, and I make sure to not eat it around other people who may feel tempted or offended, but I still squirrel away protein bars and pasta whenever I have a moment to myself.

This year, I’m trying to look at Passover as a time of self-improvement, a time where I can be more conscious of my food choices and also the journey I’ve been on - not quite epic like the Exodus from Egypt, but still a journey I never thought I could make, and one that has definitely made my life feel a lot freer.

Whether you’re celebrating Passover the traditional way or in a way that works for you, I hope you have a wonderful holiday - Chag Sameach!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.

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.

FEELING THE MAGIC

Feeling the Magic

I don’t know what drew me to the works of J. R. R. Tolkien so many years ago. I read so many books and watched so many shows at the time that I’m not sure why my brain decided to latch onto Lord of the Rings like a particularly clingy barnacle, but for almost twenty years, Tolkien’s works have been my primary positive obsession. (It’s a term I like to use to distinguish between obsessive thought patterns that make me happy and the ones that cause anxiety and/or compulsive behaviors.)

This past weekend, I traveled to New York City to see “Tolkien: Maker of Middle Earth,” a remarkable exhibit in the U.S. for a limited time only, featuring family photographs, journals, artwork, and writing by Tolkien himself.

Joined by three close friends, I traveled to the city in full cosplay and eagerly purchased a ticket, waiting for my assigned time while bouncing on my heels. Even just seeing the poster for the exhibit - heck, even just looking at the street sign and realizing I was in the right place - was a huge thrill for me even before I got in the glass elevator and made it to the exhibit hall.

Although I’m usually someone who tends to be organized, I was flitting from piece to piece in the exhibit, noticing little things that had me charging across the floor while trying not to trip on my elf robes, getting my eyes as close as possible to everything while I smiled so hard it hurt.

For me, this museum meant more than seeing relics of the past locked away behind glass. Seeing things I’d experienced positive obsessions about for so many years was an incredible experience that I expect could only be rivaled by traveling to New Zealand and seeing the movie sets or going to the Eagle and Child in London where Tolkien spent many nights sharing new drafts with his friends.

For me, feeling and sharing my joy at this museum was like nothing I’d ever done before within the Tolkien fandom. Sure, my friends (and many people who know me on a shallower level) know that I love Tolkien, but stepping through that big hobbit-hole door into the room full of things he’d written and drawn and touched was like taking a journey into the world of my imagination. It felt truly magical.

This magic is something I’ve come to enjoy, even with understanding that it’s one of the ways my OCD manifests. But this time, instead of shaking with anxiety or going over ten thousand possibilities of the ways things could go wrong in my head, I was literally jumping for joy at seeing something I’m so interested in that I could recite the movies, at least, from memory, and the books aren’t that far behind.

It’s the way I feel at conventions, when I dress up and meet other fans who wax poetic about my favorite books, movies, games, and more. It’s the way I feel when my new friend reads my fanfiction and asks me questions about it. It’s the way I felt when I met four of the stars from the Lord of the Rings and the Hobbit movies at DragonCon 2018 and was able to talk to them about their experiences, spend time with them, and take pictures with expressions of pure joy on my face.

For some people, witnessing obsession like this is just as scary as witnessing someone washing their hands over and over until their hands bleed (which, thankfully, I haven’t done for many years). It can turn people away, another reason why I spent so many years hiding my interests and pretending to like the same things as the other people my age. I smiled when I saw other people crying with joy in the autograph room at DragonCon, but there were definitely other people who were looking at them like something wasn’t quite right.

In my mind, there’s nothing wrong with expressing joy like this. A stranger in the room wearing a cosplay I’d never seen from a series I’d never heard of ran up and showed me her autograph from someone I didn’t know and threw her arms around me, and I responded by hugging her and showing her my autograph from John Noble. I love seeing people this happy, and can only hope others in the room were having similar reactions. To me, as long as people aren’t hurting themselves or others, it’s wonderful to express joy like this, even if it’s not necessarily typical - and it’s great to have this as a side effect to a disorder that usually manifests in obsessions about negative things.

So yeah, I spent a good deal of money making my way out to New York City for a museum exhibit, something I haven’t really heard of people doing before. But the happiness it brought me was worth everything, including the flight cancellation on the way back (during which I was stranded for two days because, as a new Chicagoan, I assumed I could make this trip in April without worrying about snow). Even with all the trip’s complications, all I could feel was lucky.

I felt lucky to have kind friends who I offered an “out” to, knowing that I was going to get very intense, and they chose to come along with me anyway. I never thought I’d have friends who would sign up to see me getting so excited about something they’re ambivalent about at best, but they stuck by my side the whole time with smiles on their faces. They said that even though Tolkien wasn’t their favorite person in the world, they cared enough about me to want to make me happy.

I felt lucky to have people to show the museum book to at work and beyond, where I could point out my favorite pages and tell the stories of the exhibits and not get looked at like I’m strange.

I felt lucky, most of all, to accept myself in this situation. As a kid, I thought I was so weird for getting this interested in things, and then repressed my interests for years as I feared sinking too deep into what I knew was an obsession. With more years behind me, I’ve come to realize that living the highs of OCD is just as important as learning how to deal with the lows. It won’t be an even mix, but taking advantage of these opportunities to experience bliss is a great way for me to cope with the times when I’m not okay.

In other words, I need to feel the magic.

And I absolutely plan to find more moments of magic for myself, whether that means creating a new costume for DragonCon 2019, saving up for an eventual trip to New Zealand, or poring over my museum book to absorb every last little detail from my incredible trip. It’s obsessive, sure, but it’s also a special happiness I’ve had to fight to enjoy, and I’m going to take advantage of every minute of it!

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.

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.