It’s funny how falling ill becomes the pursuit of labels. Labels, boxes, the very things that we seek to shun in most circles become all that define us. We become defined by what we cannot do. Sometimes it’s so easy to get bogged down in what we can no longer do that we lose all our sense of self. After a while the distinction between the self and the illness blurs and then we struggle to define ourselves by any other terms. We become our limitations, we become symptom lists. It’s soul-destroying. The soul is self after all. Illness, disease, disability can take that all away.
I’ve seen this slowly kill, people I loved, and I swore that I would never let this happen again. Sometimes that responsibility seems impossible, sometimes it feels like I’m a very small voice in a loud and insistant sea.
I want people to know that they are defined not by what they cannot do but what they are doing: they are brave, courageous, humble, humorous, generous, compassionate and kind. The more that they cannot do, the more in fact that they are doing: they are surviving, they are fighting, they are not giving up.
I made that promise to myself on behalf of others and I’m working hard to keep it. I refuse to define my beloved by the constraints of their illness even though I am required to spend large amounts of time and energy enumerating and explaining their many and complicated symptoms, challenges, issues, handicaps and whatever else. You see, I don’t believe that they are merely a condition or illness or even a combination of however many. I believe that they’re a person with an illness. Just as they might own a pair of shoes or have gone to university. In some contexts, those things might be the be all and end all but it’s not the bigger picture. Everyone is more than the things that they have or don’t have, more than the things that they have or haven’t done.
I have a list. (Naturally! I’m a list maker). It’s a list to remind both me and them who they really are. It’s a list to help us both remember the difference between self and illness because sometimes it’s easy to forget and because sometimes illness is all that there seems to be. I read it through to myself so that I never stop believing, so that I can help them fight, so that maybe that I can help them believe too: you are more than your illness, much more.