A MOTHER'S DAY THANK YOU

A Mother’s Day Thank You

My mom loved tracking my “firsts” when I was little - first smile, first words, first steps. I can’t even imagine how she felt when I was three and had another, far less pleasant “first” - my first phobia, which led to a diagnosis of OCD.

Every parent wants their child to be healthy, and I’m sure my mom was terrified at the prospect of a life with an only child with such a severe mental illness that it manifested before I even went to preschool. Not to mention, as a stay-at-home mom, she was the primary person responsible for taking care of me as I learned how to navigate my way through the world - and my head.

From what I remember, the explanations began simply: she told me that I thought differently from other people, that my thoughts would go around and around in my head instead of leaving. I came to associate those thoughts as “bad,” and she would take me to a child therapist who would let me draw with her scented markers and pick a little plastic prize out of a bin for talking about my thoughts and learning ways to make them go away.

When I recently asked Mom about this time in my life, she said her main concern during my childhood was what to say. Anything could cause me to start obsessing about something new, and she was afraid to set me off, afraid of causing a problem for me. All she wanted was for things to be easy for me in my head, and I can’t imagine how it must have felt on the occasions when I did start obsessing about something new after an offhand remark. It must have felt like her own home was a minefield, and yet she never gave up.

What she said was great, but what she did truly shaped me as a person.

She got me help. Even when none of her friends had children with mental illness, even when it was shameful to discuss such things, she made sure that I had a therapist and later a psychiatrist who could help me in the best way possible. It is thanks to her courage in looking past the stigma that I am who I am today, and for that, I will be forever grateful.

In honor of her great courage, here are fifteen things I’m thankful for on Mother’s Day and every day:

Dear Mom,

Thank you for getting me help at a time when the stigma against mental illness was even more powerful than it is now.

Thank you for taking me to therapy whenever I needed it, and for helping my psychiatrist gauge medicines’ effects on me when I was too young to know the difference between doses.

Thank you for listening to endless rants about whatever topics occupied my mind, even before my therapist told me that conversation is like tennis, and I sometimes have to hit the ball back.

Thank you for cooking me separate meals throughout my childhood, even when it would have been a lot easier if I’d just eaten what you made for yourself and Dad.

Thank you for being willing to only eat at restaurants where I could get pasta or French fries for the majority of my life, even if it had to be every single time.

Thank you for putting your own anxiety aside and helping me through all the unfounded worries about whether I’d throw up - and being there for me the few times I actually did.

Thank you for being my (often only) friend when I was young, listening to all of my everyday concerns about homework and teachers that probably meant little to you, but everything to me.

Thank you for sticking up for me even when I did unconventional things, especially when it involved confronting my scary middle school principal who regularly called me a freak.

Thank you for waiting fourteen years to get a dog, even when you’d wanted one your whole life, because it was a phobia too strong for me to overcome for a long time.

Thank you for always dropping everything when I needed you. The only thing that kept me going that first night alone in the hospital was that you were on a plane to meet me.

Thank you for staying on the phone with me for hours on end during my crisis two years later, even when my thoughts scared you. Your support is the reason I didn’t lose a semester and graduated college on time.

Thank you for always celebrating my creativity, including when I began writing Tolkien fanfiction. I love that you always read my stories even if you don’t know the characters or context, and discussing writing with you is one of my favorite things to do.

Thank you for cheering for me at the parade last summer when I wore my Tolkien elf robes in public, no matter what you may have been thinking.

Thank you for using your experience with me to serve as an ally to other people with OCD, whether you educate about why saying “so OCD” is hurtful or share your kindness with a student dealing with similar problems.

Most of all, thank you for believing that there was something in my life worth fighting for, even when it meant incredible sacrifices on your part every single day. Because you didn’t give up on me at three, I am now an adult who lives alone, works full time, has friends, and has come out the other end of some pretty serious struggles with a smile on my face. That strength you say you admire? It started with you.

Love,

Ellie

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.

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.