(In)visible

By Ivan Baidak

Diagnosed with Tourette’s syndrome as a teenager, Adam, now a 26-year-old freelance designer, attends his first meeting at a social support group. Here he meets Anna, a charity worker with a face hemangioma, Marta a TV anchor with alopecia, and Eva a make up artist with vitiligo. The following week he moves in with them.

Shaped after the writer’s own experience of living with Tourette’s syndrome, Adam tries to move from self-inflicted invisibility to being visible—in his family, career, and personal life.

Invisible is a book about what it means to be different. A book that encourages acceptance and tolerance. A book about fear and escape, about the necessity of being loved and accepted. It’s about the permanent struggle with your complexes and attempts to start loving yourself. It’s about hard stories. But also about big hearts.

• Language: English
• Publisher: Guernica World Editions
• Release date: Sep 15, 2022
• ISBN: 9781771838535

Book preview

Adam

"H

ello, Adam,"

said a short middle-aged man.

Hello, Adam, repeated everyone else in unison.

It was a social support group for people with challenges. My therapist recommended that I join it. Sitting in a circle, people took turns to tell their stories, share their feelings, and listen to the words of understanding and support from others like them. It took me a whole month to work up the courage to tell my story. Until then, I’d been only listening to others as if I’d wanted to make sure that it was safe. On the one hand, that therapy method offered some comfort, but on the other, human stories were usually too emotional, and that’s what made them destructive—you could relate to any of them, and it ripped open your old wounds. My tic was noticeable, to be sure, but they ignored it just like they ignored the challenges of other group members.

At my first meeting, I couldn’t handle more than fifteen minutes. Memories came flooding back, and I jumped to my feet and dashed for the door, interrupting someone’s story.

You’re leaving already? a girl asked, stopping me halfway. She had a big lump that looked like a ball of skin on her cheek.

Yeah … I live on the other side of town. Don’t want to miss the last bus.

So, you live across the bridge? she asked.

I nodded.

I can give you a lift. It’s on my way.

I said thank you and took my seat again, but I tried to tune out everything that was happening around me. I should’ve thanked her and turned her offer down, of course. She could obviously see that I had no trouble getting back home. But it turned out for the better that I stayed.

A

That was how I met my first friend with challenges. Actually, Anna became my first ever friend. I kept people at a distance unless circumstances forced them to talk to me. Sooner or later, any new connection reached the point when I had to explain why I was having the tics, which wasn’t my favourite thing to do. Just imagine that you have to explain—to justify—why you’re 5’11" tall, or why you have black hair, brown eyes, and a mole near your left eye.

I had to do that for my Tourette’s syndrome all the time, and it damaged my relationships irreparably—no matter the sincere sympathy, get-well wishes, or even doctors’ recommendations.

I didn’t have to explain anything to Anna. But I wanted to because she could hear me out. She could really understand me.

Anna had a hemangioma—a benign tumor on her cheek. She couldn’t have it removed because a carotid artery ran right through it.

I get emails from doctors across the world. They all offer their help. A few professors even flew in to see me. But MRI scans left no chance for surgery. A while ago, I still had hope. I believed. I was looking at different options. But now I know the mystical healing scenario all too well. And I’m no longer bothered.

And how are you doing, in general, these days? I asked, trying to change the subject. I had enough stories at the support group meeting that night.

How am I doing? Great. I spend most of my days working. Making clothes. My co-workers are nice, and I like my job. I could do more, to be sure, and one day things will change. It’s just that some people are assholes, and they don’t see me as I am … you know why …

I nodded.

I even got myself a car to avoid public transport. Whenever I took a subway, someone would always kill my mood with their stares.

I know, I said, unable to squeeze out more than two words.

But it’s okay. You know it, right? It’s just a matter of choice of how you decide to feel about it: angry, hurt, hateful, ironic … I go for this last one. Sometimes, I can even make fun of myself. I often say that I’m going to remodel my face just like I remodel clothes. Not the best joke, I know.

I live around the corner from here, I said. The joke was not funny at all.

Well, this is quite far out, buddy.

I’m trying to save up money to move out of my parents’ house, I said.

Move in with me, if you like, she said.

I merely smiled.

No! I’m serious. Girls and I are renting a three-bedroom apartment. One of my flatmates has just moved out. So, one room for me, one for Marta—I met her at a support group meeting, too. And there’s another spare room. Pack up and give it a go if you want to. Just let me know by next Thursday.

Smiling again, I got out of the car.

A

By the way, my father apologized for that dinner incident, and I promised I’d try not to twitch, as if that was something I enjoyed. Tics are sudden uncontrollable movements of muscles in different parts of the body. Suppose you want to raise your hand—your brain sends a nerve impulse to your hand, telling it to do it. With tics, these impulses are not controlled. That’s a very brief explanation of Tourette’s syndrome. I make no claims to medical accuracy, to be sure, but that’s how I made sense of my illness after many attempts to treat it.

I’m still trying not to bother people around me. I go shopping when there aren’t too many customers at the store, and I prefer supermarkets and self-service stations to avoid too much attention. I told the cashier at a neighbourhood grocery about my illness, so she never asks unwelcome questions. To tell the truth, I feel relieved when I tell others about my condition, even though I don’t like talking about it.

I hide in my hoodie on public transport, skip all kinds of exciting meetings and events, and don’t let myself go to the movies or other public places so as not to bother other people. I even avoid sitting by a café window during lunch, just in case my tics scare the potential customers away. When tourists ask me for help, I usually say no to avoid contact or uncomfortable situations, although I do have some qualms about it.

I’ve thought up excuses for all kinds of questions:

I caught a cold, I say when I’m struggling with sniffing;

I have a stiff neck, I say when my head suddenly jerks.

In some situations, these explanations help.

I never went to college. After I finished school, my father got me a job at the nail factory where he was working. I held out for only two weeks. I got a deep gash to my hand when the tics defeated me, so I had to look for another, safer job. I spent some time sorting mail at the post office, but I wanted to work with people, so I decided to become a sales rep. Over a year, I had fifty job interviews with wine merchants, sweet shops, and bakeries, travel agencies, language schools, and internet providers. None