“You could leave your seat to me. Are you not ashamed of being seated.” Told me a woman in her sixties on the bus.
“Actually, I’m ill, I can’t stand. “I replied with a semblance of a smile.
My interlocutor sighed deeply and rolled her eyes. As if that would change anything. As if I were lying. As if it was my fault. And when I stood up, she was probably the first to look with incomprehension, astonishment and pity at my uncertain and slowed gait. She wouldn’t be the only one to have judged me, and not to have understood that in fact, yes, I have a chronic disease. And that this is why I can’t stand or walk at times.
From enduring to accepting the looks of others
In the early stages of the disease, the looks of others were unbearable for me. First of all because there were suddenly there, whereas before I was ill, people didn’t look at me. Or not more than that. An ordinary person, with no obvious physical or clothing distinction, does not attract attention. But when I became ill, others started to look at me. With incomprehension, suspicion, curiosity, pity. One of my friends, to whom I had explained that people look at the wheelchair in the street, gently laughed at me until we went sightseeing together for a week and after a few days she realized: “It’s true, you’re right, people do look at us. “
At the beginning of the disease, the looks of others seemed brutal and harsh and kept reminding me that I was different, I was ill. And it hurt. At a time when I had not yet accepted the disease, I could not accept the way others looked at my sick body. And accepting the disease is not enough to accept the way others look at it. These are two different stages in this long and not always easy process. However, accepting the way others looked at me was part of the acceptance of the disease. But I think that comes after I had made peace with the disease itself and decided to go ahead, despite everything, despite it.
Over time, I also realised that the way others looked at me varied, that it was not unique, but that it ranged from pity to doubt, going through curiosity, questioning or compassion. Finally, I also learned not to pay too much attention to the looks that others give me when I am walking uncertainly or when I am in my wheelchair, depending on the moment, not paying too much attention to what others might think. What does it matter in the end? Those who matter know, those who don’t know don’t really matter.
From accepting to taming the looks of others
Accepting the looks of others also meant overcoming the fear that I would be put in a box, that I would be judged even before people really knew me, that people would feel sorry for me, that I would be looked down upon. It was even more difficult when I met new people. I didn’t want them to put me in a category, in a box, from which it would be difficult to get out. Even in the phases when my disease was not or hardly noticeable, I sometimes worried about how to tell others and how they would deal with it if they knew.
One day, as I was getting off the bus, a man asked me how I managed to smile like that, despite my situation. “Because I am happy,” I replied with a big smile. Why should my life be worse than someone else’s because I have a chronic disease and use a wheelchair? Since then, I have always enjoyed smiling from the bottom of my heart at everyone who looks at me, but especially at those who do so with pity.
Of course, you have to accept the looks of others, but only to a certain extent. Even more than accepting them, you have to tame them. You have to make them understand that you are not a category and not a label. That you are not less capable because you have a chronic disease. That your life is not less valuable because of it. That you can be happy despite everything, even if they don’t believe you.
And how did you accept the gaze of others? Was it difficult or rather easy?