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(Irma Kniivila for the Globe and Mail)
(Irma Kniivila for the Globe and Mail)

The lingering symptoms of a brain injury force me to lead a double life Add to ...

With lingering symptoms from a brain injury, I found myself in my late 20s living with a complex chronic illness. In many ways I had to start over. I traded a life that I loved for solitude.

I needed to process and cope with such a drastic life change, get my new bearings, detach from all previous hopes and dreams in order to create a new set of beliefs and views. I spent a lot of time having conversations with myself and in my own head. Important, yes, but everything has its limits.

The absence of any routine or regular social interactions meant that I missed out on an integral form of human connection: being physically in the company of other people for no other purpose than to be with other people. Human beings are not built for isolation. Recognizing this, I decided to make an effort to be more social.

When socializing with new people, the first question I am almost always asked is, “What do you do?” Never, “Tell me something interesting about yourself,” or, “What do you love doing?”

Answering directly with, “Nothing, I am not working because of disability/chronic illness …” isn’t exactly the best way to start a conversation.

When I meet someone, I want my essence to shine through, unclouded by preconceived misconceptions or judgments. So, when I’m asked that dreaded question, I answer instead with all the things I love doing. Whether or not they are my occupation is a technicality.

The differences I live with are not who I am. Rather, they are integral to how I must function. My full-time occupation now is learning how to function and interact with the world in a way entirely different than anything I’ve ever known.

I have a strong urge to step away from this reality, to attend a board-game meetup or art show, to talk about anything but my illness.

In my efforts to be social, I find myself leading a double life. Not wanting to attract undue attention, I put on a disguise. Thanks in part to the fact I have no outwardly visible impairments, I am often able to go incognito and appear as “normal” as everyone else.

But every time I step outside my house, I must navigate a minefield of potential triggers. One wrong step and I’ll exacerbate my symptoms, with unpleasant consequences.

Irma Kniivila for the Globe and Mail

To manage my sensitivity to fluorescent light, I wear a hat with a visor shading my eyes. I consciously keep my back to direct light sources and always choose the darkest part of the room to stay in.

To help with my hyperacusis, I wear ear plugs. When I notice people staring at the little bits of foam popping out of my ears I become more conscious of covering my ears at all times.

While I have become very skilled at playing this game, it gets exhausting to constantly put on an act, anticipate triggers and position myself to mitigate them without being noticed. This is a lot of multitasking for someone who isn’t really good at it, and has limited mental processing power.

I now appreciate why socializing is so difficult. I believe it is because we are all playing this awkward game: trying to be true to ourselves while being mindful of societal norms (no matter how flawed they may be), all the while navigating through our fears of how we’re perceived and our own desires for acceptance.

Recently, I met someone new. I was in disguise, as I am whenever I meet anyone for the first time. We were having a rather abstract discussion about change and coping with change when this person asked me bluntly if I had any personal experience with a significant life change that led me to challenge previously held values and beliefs.

Perhaps it was because I actually had an interesting answer to this question, or perhaps something at a subconscious level was telling me to trust, or maybe I was tired and couldn’t come up with anything other than the truth – but I shared my story with him.

When I had finished, I was greeted with a blank stare. It’s a lot for people to process, and I can’t say I was entirely surprised.

But then I was caught off guard by his response: “Me, too. I also had a brain injury. As you were talking I felt like I was hearing my own story being told to me.”

And, just like that, we both removed our disguises. I tucked my hair behind my ears, no longer self-conscious.

In that moment, I was overwhelmed by relief at no longer having to act – but even more so by a feeling of comfort. Comfort in knowing that I’m not alone in the wild quest of trying to figure out how to approach this world and find my place in it.

Once the initial shock of our discovery wore off, conversation resumed as usual. Both of us implicitly understood that neither was interested in talking about our situations. We were both delighted simply to be in good company, where we no longer had to pretend but could be ourselves and be normal.

When I was maxed out and had to abruptly cut a great conversation short, I said without hesitation, “I'm tired.”

And he responded: “No worries, I get it. See you later.”

Kanika Gupta lives in Toronto.

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