Testimonial: I am an impostor

A personal story from an adult living with cystic fibrosis about feeling normal, identity, anxiety, and coping with chronic illness on a daily basis.

October 6, 2015

What conditions do you have to meet in order to give relevant testimony? Do you have to have experienced terrible dramas, insurmountable trials? Is it bravery in the face of a losing battle or an unexpected victory? Of all these statements, the constant is found in the extraordinary experience of a being transformed by exposure to the unfathomable. So why am I writing here when none of these characteristics apply to my existence?

I learned a long time ago that I was a bit different. But different from whom? I don't really believe that there is a category of “healthy and normal” people, untouchable archetypes of the perfect person, who, when removed from them, would define the degrees of marginality. So I preferred to see my marginality as ordinary, to consider taking medication daily as a trivial routine, in the same way as dental hygiene.

Educated from a young age to be “normally different”, I was able to easily blend in with my peers, candidly defusing unusual actions such as taking medication or my temporary absences for treatments. Even my frequent clinic appointments never really made me feel any different. They were part of my personal routine, a stopover that sometimes allowed me to trudge for a few hours. As for the cough, it stuck more or less to my skin, like acne for others: sometimes unpleasant, but rarely disabling. That's all the difference: not having been curtailed in my desires by a moderating condition.

The most worrying elements did not come from my physical health, but rather from certain stories gleaned here and there on the Web. Few promised bright tomorrows for people who were genetically disadvantaged. However, that did not turn me into a convict. After the initial naivety and the frightening realization of an uncertain future came the discovery that I was, despite everything, lucky in my bad luck.

I had a disabling anomaly that, thankfully, was content to remain invisible, hiding at the bottom of the hold. Maybe it would show up eventually, but in the meantime, life was taking its course. During my high school years, I was fortunate to be a cross country runner, actor, actor, amateur writer, foreign Sunday missionary, cheerful friend, and passionate lover. The opportunities did not fail to forget this pale shadow that sometimes struggled to keep up.

Has the tide changed at CEGEP? To say no would be a lie, but does that mean my condition has worsened? Not at all. Simply, like any human being in the making, some colors have settled, while others have faded in favor of new flashes.

After studying theater, writing became an increasingly important part of my life. Then an unexpected discipline emerged: capoeira, an art combining dance, martial arts, music and foreign culture. I also discovered a more discreet but just as profound passion: tea and the universe that surrounds it. These interests often left me with little time to worry about the future.

The only shadows on the board come from an annoying tendency to turn the smallest discomfort into a serious illness. A confabulation of the mind, fortunately tempered by the rational benevolence of my girlfriend, who, over the course of our seven years of relationship, has learned to put my disproportionate anxieties into perspective.

So I can't really complain. In fact, this is what made me hesitate before writing this testimony, aware that others are experiencing realities that are much more difficult than mine. Perhaps the situation will change one day, but until then, I am taking care of myself and enjoying this almost too perfect existence that is available to me.

Testimonial by Manuel Legault Roy
Montreal (Quebec)

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