A GERMY VICTORY

A Germy Victory

A few weeks before DragonCon, I learned that one of the five host hotels - the Sheraton Atlanta - had an outbreak of Legionnaire’s Disease.

I’d never heard of Legionnaire’s before, but a quick Google search told me that it was a rather unpleasant disease with potentially lethal consequences. Even though I’d felt nothing but excitement for DragonCon until then, I began to feel nervous.

It was the legacy of the days when the thought of germs occupied my mind all day, even if no one around me was sick and I felt perfectly fine. Often, I felt the need to ask an adult - usually my mom - if she thought I was sick, or if my forehead felt warm, or if this cough sounded like it warranted attention.

Online, dozens of people in my various DragonCon Facebook groups started making Legionnaire’s memes and posting every update from the hotel and the CDC. For a while, the source of the disease was hard to find, and we assumed the hotel would be closed. It was a comfort to think I could simply avoid it, but a week before the convention, the hotel reopened.

Like many people I saw online, I wasn’t convinced that the disease was eradicated from the hotel. I was relieved that the source was found, but the source was the air conditioning that would definitely be turned on high. And there was no way to avoid it entirely, as it was my job to pick up my badge and Dad’s while he was at work, and the badge pickup was at the Sheraton.

Briefly, I imagined the germs that might still be dormant in the air conditioning of the hotel, spraying out into the crowd. People coughing, sneezing, getting worse, having to go to the hospital. It was just plausible enough to worry me, although I’d accepted that I’d just have to do it.

I arrived home a few days before, mostly to enjoy the company of my mom, Nana, and dog (who ran over with his tail wagging when I showed him my new cosplays), and when I got home, I saw that Dad had the very amusing idea to put a Giant Microbes version of the Legionnaire’s bacteria on my bed.

The gift meant a lot more to me than the dad joke it was intended to be. I understood that he had faith in me to go to the Sheraton and pick up our badges and be fine mentally as well as physically, and I took this token of faith with me to downtown Atlanta on Thursday afternoon.

And just like everyone else at the convention, I started my journey at the Sheraton.

If I’d been in a similar situation when I was a kid, I’d have done one of several things: try to hold my breath as long as humanly possible, rinse out my mouth at a water fountain safely away from the building, cough into my elbow repeatedly even if I had no need to, and if I had to open my mouth to speak to the check-in clerks, I’d have probably spit just a little in the corner of my mouth. All of these steps would be to get rid of the germs that I couldn’t see but I would know were there, and even then, I’d be thinking about it all day and beyond. I’d carefully watch myself for symptoms, even the slightest tickle in my nose or throat or feeling of fatigue enough to send me into a whirlwind of anxious thoughts.

I won’t deny that I was a little nervous to enter the Sheraton, even though I knew that they wouldn’t be open if people could still get sick. But germs, as I knew from my compulsions, are hard to get rid of, and there were so many people packed into the room that the odds of someone being sick - from a germ at the hotel or one they brought from somewhere else - were high.

But I still did it.

While I was there, I breathed, I talked with people, and I even showed off “Leegie” the plush virus in line, who was a great hit. I got my badge and Dad’s - he accompanied me the other days, although he didn’t cosplay - and even stayed in the building for about another hour to purchase some official con merchandise. I talked to people in line, shopped, explored, and by the time I left, I wasn’t even thinking about Legionnaire’s Disease anymore.

Nor, in the ensuing days, did I think much about all the coughing, sneezing people around me. At a convention of 85,000 people, plenty are going to be sick, I’ve learned - and getting sick afterwards is a very small sacrifice compared to the joy I feel during these conventions. “Con crud,” as it’s commonly known, was something I expected, and even though I don’t particularly like being sick, I wasn’t obsessing over it.

As things turned out, I didn’t end up getting sick after DragonCon. Several of my new friends did, even people who I spent a great deal of time with, but I never felt sick. Even without doing any of the compulsions I would have done as a child, or even something more reasonable like drinking extra orange juice, I didn’t get sick.

It took me many years to learn that lesson, and many more to be able to apply it to the point where I can ignore people around me who aren’t feeling well. It’s harder for me when people are nauseous or vomiting thanks to my emetophobia, but in general, I have learned to stop thinking of my potential illness ahead of my actual happiness.

After all, that weekend, I had much better things to think about - rushing to Tolkien and Fire Emblem photoshoots in my two new cosplays, shopping in a four-story mall filled with nerdy merchandise, being the first person on the dance floor at the Tolkien-themed dance party with my friends from last year, talking about an amazing new video game with new friends, competing in a Pokemon Go tournament, doing a Galadriel-themed photo challenge, and much more.

There was simply no room for OCD to ruin my weekend, and it shows me how far I’ve come - and how much farther I can go in the future, as I continue to follow my goals with the help of friends and fandoms new and old!

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.

EASY

Easy

TW: Food, disordered eating

There were seeds in the bread.

It was a simple mistake: the server had given me multigrain bread instead of the plain for my tomato soup from Cosi. I’d even eaten some of it while I was looking at my computer screen, not realizing that it was wrong. I knew, from the bites I’d already taken, that there were no nuts in the bread, nor was there anything else that would make me sick.

And yet, it still became an ordeal.

I tried to be brave and finish the slice. I usually thought the portions of bread were too small, but this one felt gargantuan. I made it through a few bites, noticing all the different shapes and textures of the seeds until I finally decided to stop torturing myself and go back to the restaurant. I left with a slice of plain bread in hand, which I promptly devoured.

I knew, in my head, that there was nothing wrong with the multigrain slice, and I should have eaten it rather than wasting the half-slice I had left. But with food, my OCD fights back the hardest, and some days, the fight is too hard to win.

My OCD manifested as emetophobia (the fear of vomiting) as far back as I can remember, which meant that anything unexpected in my food - like seeds in bread - was completely unacceptable. When I was younger, I wouldn’t have let this mistake happen out of the degree I inspected my food, but even now, it still causes panic in me if I eat something I didn’t mean to by accident.

I was so anxious during my childhood that I was only able to eat the same exact thing every day: plain cereal for breakfast with milk on the side; a plain bagel for lunch with some snack mix or an apple after school; plain pasta with canned vegetables and a scoop of strawberry yogurt for dinner. If I had to deviate from my routine for even a single day, I got anxious - and if there was any chance of my food being contaminated or not what I was used to, even if it was as simple as butter on the pasta, my anxiety soared.

It took me years to start trying new foods in earnest, and even more to work with a nutritionist to try a diet where I was getting the necessary nutrients for my body. I’m proud of my accomplishments so far, but there’s still something inside me that craves my old routine and misses it if I eat something different even for a day.

After my work with a nutritionist, most of my easily-visible food anxiety has departed. But I can’t seem to shake my anxiety at a common discussion starter: “Where do you want to go for dinner?”

When I was younger and someone said this, not knowing about my habits, I would panic and demand to go to a place where I could eat. Now, I keep those feelings on the inside with some carefully formulated phrases in case people want to go somewhere I can’t muster the courage for: “I had a big lunch.” “I’m just coming to hang out.” “I’m happy eating later.” “I really don’t care.” 

Truth is, I do care, but I’m afraid that if I express my rigid eating habits, I’ll find myself friendless. After all, many people are willing to eat foods I like the first time, but for people who find repetitive food boring, their interest wanes over time - in both the dinners, and me.

Last weekend, I stayed silent as my friends tossed around ideas. Korean - maybe I can deal with that, there’s rice and noodles and vegetables, right? But no, they’re moving on to Greek, where I don’t know what’s vegetarian, and then burgers, which definitely aren’t vegetarian except for veggie burgers and I don’t like them, and then to so many other options that my head is reeling. I practically cried out in relief when one person suggested pasta, and everyone went along with her suggestion as my heart rate went back to normal.

“Why don’t you like trying new foods?” another friend asked at the table when I say how much I appreciate eating pasta. “It’s so easy.”

My fork with comfortable, easy pasta hovered in my hand.

“Easy” would be the farthest word from my mind as I recall the long night sitting at the kitchen table because I was too afraid to take a bite of fish sticks, the time a girl in my class held me down and forced me to take my first bite of pizza, and the panic when I found out that I would have to eat at a Mexican place on a job interview.

 It’s not what I think of when I recall working with my nutritionist on eating a single bite of a new kind of grain or a new vegetable, even if that one bite was all I had. It’s not what I think of when remembering the time I was too scared to try Persian food on my own and my best friend went out to a restaurant with me to try the new dishes piece by piece.

As an emetophobe whose thoughts cycle through my head, trying new foods is anything but easy. It represents years of pain before I could even start trying, followed by years of eating new foods one bite at a time, keeping some and abandoning others and fighting hard to learn to eat new foods and maybe enjoy them.

Every day, I find myself facing some version of this challenge. Sometimes, it’s that my bread has seeds in it, and the texture disgusts me or the thought that I’ve already eaten some and it may make me sick infests my head. Other times, it’s the days when I do end up at restaurants where I scan the menu endlessly for anything I feel comfortable eating, and decide on the fly which excuses will work best with which people. It can be the lightly mocking remarks from friendly coworkers commenting that I’m eating the same thing again or the not-so-friendly mocking from others who comment cruelly on my food choices, as if I’d choose to eat like a “freak.”

OCD is not a life of “easy.” OCD is a life of trying as hard as I can on the inside to make my new ventures look easy on the outside. It’s a huge difference, and one that I share with my friends and with my readers as an attempt to teach that what might look easy to some is most definitely not for others. Some things that I find easy, like making a phone call, petting a dog, or commuting to work, are this hard for other people. If we can try our best to be kind to what other people find hard, it’d make the world a much easier place for people like me.

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.

Perseverance

Perseverance

It was nighttime on the first day I was going to take medicine for my OCD. The journey ahead of me was daunting, and it seemed like I would never be able to take that first step, let alone go past it. My nine-year-old mind was afraid of who I would become once I started taking the medicine, almost as afraid of who I might become if I didn’t.

Creeping through the kitchen, I made my way to the bottle of liquid Paxil and took the phone in my other hand. I needed to know that I wasn’t making this journey alone, that there was someone beyond the four walls of my house who would love me no matter what happened when that orange liquid made its way down my throat.

I called my Nana.

Nana - my mother’s mother - was 72 then, and when she picked up the phone, just hearing her voice calmed my racing heart and jittery hands. She told me that she knew what I was going to do and it was so brave. She was so proud of me for taking that first step. And when that wasn’t quite enough, she told me that she was about to take her mental health medicine too, and if I wanted to take it with her, I would have to start on the count of three.

The idea that she took medicine too strengthened me, because I knew who she had turned out to be: the most loving person I’d ever met, someone who had endured the long-ago loss of her husband with bravery, someone who would take as much time as was needed to help children with various types of disabilities eat their lunch at her job in a local elementary school cafeteria. She was someone who I looked up to since the day I was born, and the very idea that she could do what she did while being on medicine – and that the medicine could have even helped her with it – made me tip the little cup down my throat, giving me the strength to begin my own journey.

Nana has been there for every moment before and since.

She helped me get over my anxiety to go on a school trip to Israel when I knew I’d be in a foreign country with no friends. We did everything from talking seriously about the problem to coming up with jokes about the trip that could make me laugh when I was away, giving me a smile even when she couldn’t be there.

She was there for me seven years ago, when I was in the hospital and terrified that I wouldn’t live to see the next day, and her voice kept me as calm as possible as I figured out next steps.

She listened as I poured my heart out to her years later, suffering from endless negative thoughts and desperate for anything that would help. When I needed to come home from school to seek more help from my therapist, I remember stretching out on her couch with my head in her lap, finally calm enough to just breathe.

She comforted me all those times just as she did when she held me as a baby, and when she learned that maybe that perfect baby wasn’t so perfect after all, she still loved me just as fiercely. I’ve never once had the feeling that she’s ashamed of me, even when I did compulsions in front of her as a child or told her all about the thoughts running amok in my head. All I’ve ever felt from her is strength, courage, and inestimable love.

And it’s not just for the bad stuff too - she’s always willing to participate in my positive obsessions. She probably knows far more about Lord of the Rings, Pokemon, and all my other fads than she ever cared to, and she still asks me questions when she knows I want to talk and reads my fanfiction even if she needs me to explain all the backstory over the phone.

She treats everything I’ve written like it’s the best thing in the world, even if it was a childish scribble on notebook paper when I was bored in school, and it was this encouragement that made me want to share my story on No Shame On U’s blog - in fact, she was the first person I called after I made the decision.

Nearly twenty years after that night in the kitchen, her help has given me the strength to accomplish a great deal more than I ever thought I would be able to. I still draw courage from her weekly letters and call her to share all the joys and sorrows of life. She picks up the phone with cheer no matter what and tells me how proud she is of me whether I’m sharing a success or brainstorming past a roadblock.

It is in large part thanks to her support that I am who I am today, someone who has not only achieved many milestones in life but who also feels comfortable sharing my story. When I write these posts, I wonder if maybe I’m helping someone like she has helped me.

From that day so many years ago until just last night, she ends all of our calls and her letters with one word: persevere. It’s a word that brings me strength every day, and I couldn’t be more thankful for Nana as she celebrates her 91st birthday.

Not just this post, but this blog, are for you, Nana - and I can’t wait to share more memories in the years 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.

The Social Price of OCD

The Social Price of OCD

My first friendship started in the sandbox, where four-year-old me was making a birthday cake for my feet and a fellow preschooler asked to help. It ended six years later at a pool party, after a huge fight, where she ended up splashing with the popular group while I sat alone and made up stories in my head.

I didn’t know to question friendship until then, but I’d always questioned social interaction. I might not have had Automatic Negative Thoughts (ANTs) about socializing before, but I knew there was something different in how I interacted with people.

I never knew what to do when interacting with other kids, and even if I tried the same things that worked for them, I’d get vastly different reactions. Even before the actual bullying started, I felt unsure about my role in the class, and honestly, I didn’t have much time to learn how to reframe my thinking.

I was learning different things: how to pretend to be interested in small talk when my brain was going haywire, how to hide my interests even if they were the only things keeping me sane, how to keep my conversation partners from noticing if I was doing a compulsion, or even how to escape a conversation to do a compulsion I didn’t want them to see. I didn’t have the time or mental capacity to learn social niceties when I was fighting so hard against my own head.

As a result, social interaction was never easy.

I never had many friends as a kid. Every time someone would make an overture, I would get so excited, even if it was something small that they were also doing with everyone else. I quickly and painfully learned that “best friends forever” did not apply to me and it was easier to talk to teachers and other adults because they were at work and couldn’t be rude to a kid. (Well, most of the time.)

It took until the end of high school to form my first friendship that’s lasted more than my first, doomed friendship, and I still question if I’ve made a mistake when my friends say they’re busy or otherwise unavailable. I try to find ways to make my friends feel special to me, to give them gifts and write on important days and make sure to say hello on ordinary days too.

Some people have called it sweet. I call it the legacy of my compulsions and ANTs, a way to try to ensure they won’t abandon me too.

With that mindset, it’s no wonder that I’m cautious, especially in new situations. Especially when I first moved to Chicago, when I was starting a new life in a new city and knew absolutely no one. I couldn’t make the wrong first impression, and so I followed my rules (mainly, be as normal as possible) and did my best to feel comfortable.

Slowly, I began to make friends. It took me months, and only now am I finally feeling comfortable with my friend group outside of my work and my coworkers and boss. But it’s still hard for me when I see other new people coming in who seem to have infinite social skills and get everyone around them to like them in mere minutes.

Sometimes I wish for that easy charisma, the way these people can just swoop into a room and get everyone’s attention and respect without anything stopping them. Even when I’m with my closest friends now, people I’ve known for such a long time that I feel like I can read their minds, I still analyze my interactions with them, sometimes to the point where I feel like I’m missing out on the lighthearted fun.

And when I encounter someone who seems to have it so easy, even when I know I’m unaware of what may be going on in their own heads, I find it all too easy to get jealous. I envy the way some people can start a new job and immediately feel comfortable teasing their coworkers and boss, to the point where they become accepted instantly. I envy being the person no one forgets is in the room and the one whose conversations don’t all revolve around an awkward “what are you doing this weekend” and the one who is always appreciated, always seen.

As I devoured book after book in my childhood, often sneaking them out to the playground at recess to keep me company, I found myself gravitating towards stories where the main characters somehow find themselves in an important position. In these books, people had to include - or at least speak to - the protagonist, even if it was merely due to a social convention. As a young girl, that mostly meant books involving princesses, which I clung to secretly because I didn’t like the way it made me seem shallow.

When I sat alone at the lunch table and in the carpool line, I dreamed of waking up one day and having something about myself that would make people care about me and show me the same respect they did to their peers; to forgive my overanalyzing and treat me like I was someone special. At minimum, something that would make people have to be nice to me, even if I did a compulsion or said something wrong, and even if it didn’t lead to true friendships, at least I’d feel included on the surface. In the stories I made up in my head, many of my characters took up these important societal roles, loath as I was (and am) to admit it.

Here’s what I loved, and still love: these characters have the same inner turmoil I do, and often, even more. But they’re respected and heard and loved by their peers no matter what.

Even now, I love books where a character goes from being ostracized, ignored, or bullied to having some sort of special role that makes everyone pay attention to them. From Harry Potter to The Goblin Emperor (which I am currently loving), I love reading and rereading the part where the people who treated them poorly are forced to respect them and they finally feel included for the first time.

Things have gotten a lot better now, and days when I feel like I need to cling to these stories are few and far between. I can see what triggers me now, and what gives me the impulse to pounce on the book and flip to the worn pages usually at the front where everything gets better. I know, even now, that tomorrow will be a better day where things go back to normal and I won’t feel so bad that my OCD-ridden childhood means I lack the confidence and self-assuredness to make these instant friends on my own.

But today, on the bus back home, I’ll give myself time to dream of my favorite stories, to sink into them and imagine what could have been.

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 MOTHER'S PERSPECTIVE… Fighting the Anxious Urge to Fix Everything: Helpful Advice from Preschool

A Mother’s Perspective…

Fighting the Anxious Urge to Fix Everything: Helpful Advice from Preschool

* This is our third contribution from Melissa, a Mom of two, dealing with her own anxiety as well as her children’s challenges. She is sharing her story to help others understand what it’s like to live and parent with mental illness.

My kids are in junior high now, but almost daily I think back to some advice I received when they were in preschool, and it’s as helpful now as it was then. 

These words of wisdom came on a day when something happened that left me quite worried about my then 2-year-old son after I dropped him off at school.  All these years later, I have no idea what the issue was, but I know my anxiety was so strong that I called the school to find out how he was doing.  The director’s assistant told me in a firm, yet kind, voice,

“He’s going about his day.  You should go about yours.”   

For the first time, I experienced the realization that this little human being for whom I felt responsible 100% of the time actually had his own life.  He had his own journey that was separate from my journey.  Now, granted he was just 2-years-old at the time, and it’s not like I sent him out into the big, cold world all on his own.  He was in a loving environment after all, but doesn’t that guidance apply no matter how old your child?  As a parent with anxiety, it’s sage advice that I hold onto every single day.

Whether you are diagnosed with anxiety or not, as parents, we worry about our children.  While that worry can be overwhelming, the issue that concerns me more is the pressure we all put on ourselves to make our children happy.  I see it all around me: from my closest friends to strangers posting on the internet.

We all know parents who social engineer their child’s life to make sure they are included all the time.  Shouldn’t we teach our children that everyone isn’t included all the time?  Shouldn’t they learn to handle the disappointment and the hurt feelings?  It’s tough to sit with, but certainly the coping skills they will develop through these childhood experiences will help them when they don’t get the promotion they expect years from now.

What about the parent who’s asking for help online because their child absolutely, positively wants a birthday party with a rhinoceros jumping out of the cake, and the child will just be heartbroken if this stressed-out parent can’t make the magic happen.  (Ok, maybe I’m exaggerating a bit, but you get the point.)  Don’t our children need to know they don’t get everything they want, but that they will be ok?  They will survive.  Life will go on.

And how about the high-paid Hollywood stars who go to high-risk measures to ensure their child’s future?  Don’t you think there’s some anxiety there pushing those parents to make sure their children have every advantage without having to do the hard work or face the consequences otherwise?

At the heart of all these extreme efforts, I see so much anxiety in parents who are worried that they are losing in the game of parenthood.  I can literally feel the stress when I scroll past these posts and stories online.  It jumps off the screen at me.  It stresses me out just to read it.

As a parent, I’ve been torn between rushing to rescue my children and staying out of the way.  Too often, I’ve taken control of the situation rather than letting them take responsibility for overcoming obstacles and advocating for themselves. Now I’m trying to undo the damage of years of making things easy for them. 

On the flip side, I have lived the consequences as the child of parents who wanted to smooth my path and solve all of my problems.  Trust me, it doesn’t lead to the most desirable outcome.  As an adult, I have my own challenges that are directly related to my parents not letting me go about my day, and I am left trying to learn the lessons I wish I’d been taught all those years ago.  There’s truth to the idea that it’s easier to learn things when you are younger.

So as our children go back to school this fall, let’s all try to stay out of their way.  Give them guidance when they need it.  Offer loving support when difficulties arise.  But please, for your child’s sake, don’t let your anxiety force you to live their life for them: let them go about their day, and you should go about yours. 

Melissa is a married mother of two, dealing with her own anxiety as well as her children’s challenges. She is sharing her story to help others understand what it’s like to live and parent with mental illness.