Most people upon first meeting me fall into one of two categories; either I am to be ignored as a blemish upon society’s “flawless” beauty, or I am treated as if the life of a disabled person is so gruelling that even existing is something of an achievement. I am not brave because I woke up this morning. I am not brave because I got dressed. I am not brave because I ate breakfast. In fact, I am not brave at all. Anyone who has seen my reaction to any kind of insect or arachnid other than a ladybird or butterfly will confirm this.
One unfortunate truth of living with a currently incurable illness is not knowing if you will ever get better, or if you will live the rest of your life experiencing symptoms. Given that Chronic Fatigue Synrdome (CFS) is thankfully not particularly life-threatening, or certainly only so in rare and very severe cases, my future in terms of health is a big, blank canvas. I do not know when I will get well, if I recover at all, and I do not know how much life I will have left after recovering, if I have any at all. That would be a daunting prospect to anyone, and I would be lying if I said that I did not feel fear of such a future. Frequently I am told that this sort of thinking is pessimistic, but it is not. I’m a realist, and this is a rather ugly aspect of reality.
Those who have seen me at my very worst, barely able to move in bed and having no interest in food or drink whatsoever, would not say I was brave. They have seen me cry, and they have seen me shake with fear when I realise that this could be my life for a long time. They have seen me withdraw into myself shortly before a medic pokes and prods me, and then says that I’m a mere attention-seeker. Everyone else sees me on my better days, when I’m cheerful and upbeat because I’m not in as much pain or as fatigued. They have not seen me cry or shake, and when these people tell me that I’m brave, they have not seen a representative view of every aspect of my life.
No one in their right mind makes the choice to experience chronic, debilitating illnesses. I did not make the choice to face this illness, so why should I be deemed brave for trying to live with a circumstance I can do nothing about? Bravery, for me, is when someone makes the choice to face their fears, or to put themselves in harm’s way to protect others. I have done neither, and so will adamantly deny any bravery on my part.
My wheelchair is not a medal of honour. Neither should it be a setback, or invisibility cloak. It is a wheelchair, and it’s only function is to carry me from place to place because I cannot carry myself.