It’s like a tug of war.
And I’m not sure which side I want to win.
I’m not sure which side I’m supposed to want to win.
For the past couple of months, I have ignored the steadily growing reality. I have told myself that nothing has changed.
But somehow, my being has been split, with neither side accommodating the others’ presence.
Part of me is chronically ill. And part of me has forgotten.
It’s so minuscule, the change, when one side takes over. It’s hard to notice.
I’m not quite sure when it started. Perhaps it was when I chose to leave my tinted glasses behind, not thinking or caring of the excess trauma it put on my eyes. I came up with a multitude of reasons to support my decision, but ultimately, I wanted to look normal. I felt like it was time to look normal. Time to be normal.
Gradually, I started to notice a change.
I went to my school’s orientation for students with disabilities, and I felt removed from my peers. I told myself that it was because of age, because I have spent time away from school. And that was true, but not entirely.
I acknowledged their challenges, but felt that they weren’t mine. I had a handle on myself. I didn’t need the offered resources, the excess support. I may have in the past, but I’m fine now. I’m under control.
And as I started to think of my future, of dreams that I’ve held closely to me for years, focused on accessibility, I noticed that there was a gulf my thoughts. An gulf that prevented me from understanding the needs of others, an gulf that had me thinking I wasn’t aware of the needs of a wheelchair user, despite the fact that I used one for months.
I was steadily disassociating myself from my condition.
I am steadily disassociating myself from my body.
And the minute I realized that I grew defensive. After all, isn’t overcoming my ‘salt’ the best thing I can do for myself and all people who deal with challenges? Isn’t proving my humanity, my normality, the best way to remove the power and stigma of illness?
And maybe it is. It certainly sounds impressive- overcoming obstacles. Maybe going and living my life despite my fluctuating health is the strong thing to do. The right thing.
But somehow, it doesn’t feel right.
In my efforts to live a normal life, I am trying to hide my condition, from myself and those around me. I will acknowledge its presence, but I will go no further than that. I am refusing to let it impact my decisions.
And that’s wrong. Because it is a part of me. It is a part of my past, my present, and my future.
I have to take it into consideration, I have to live my life with it and not in spite of it.
Because otherwise, I am living my life in spite of myself.
I have a chronic illness. It’s not just a title. My body is constantly throwing new symptoms at me, constantly fluctuating in strength and stamina, constantly scaring me. The obstacle is insurmountable.
That doesn’t mean that I can’t decorate it. It doesn’t mean that it can’t become a beautiful centrepiece along my path, that I can’t shoulder it, sit on it, carry it with me, or transform it into a backdrop. It doesn’t mean that I can’t live a life full of choices. Or be as ‘normal’ as anyone ever is.
But it does mean I can’t run away.
If I don’t want to focus on accessibility in my career, that’s okay. I don’t have to.
But if I ignore a passion for accessibility because I want to feel strong, to feel invincible, to feel ‘normal’ then that’s not okay.
I can’t ignore the existence of illness.
I can’t ignore the existence of challenges and barriers.
I can’t ignore myself.