“You look better.”
People say this to me all the time. I thank them and either respond by saying, “I’m feeling less bad today,” or “looks are deceiving.” If the person knows anything about me or my condition, they sympathize and we move onto other cordialities. If the person doesn’t know anything about me or my condition, they tend to say things like “well, you have to want to get better.”
OOOOOOhhhh so that’s the magic trick? After all these years of doctor visits and tests and treatments, you mean to tell me that I just have to want? If I want to get better, I’ll get better? Like, uh, I can just have anything I want? I wanted my dog to live forever. I wanted to be married. I wanted to perform in a Broadway show. I wanted a pet leprechaun when I was a kid. I want to win the lottery. I want to live on my own again. I want to be able to go to a store to buy my own groceries again. I want to be off of all these medications. I want to be able to work a steady job. And you’d better fucking believe, I want my leg to “get better.”
It makes me sound like some kind of jerky pessimist. I’m not. I’m an eternal optimist, despite this colossal shit storm that is my life. The thing is, though, I don’t have the luxury of being a spoiled little brat. Like most regular adult humans, I don’t get to run my life according to what I want or don’t want. I don’t want to get out of bed in the morning. I do it anyway. I don’t want to swim. I do it anyway. I don’t want to do hours of horribly painful inversion exercises hoping my foot will someday align with my leg. I don’t want the attention caused by my boot and my shaking leg. I don’t want forever to be held hostage by my leg. So I keep trying.
I have CRPS. There is no cure. It is a chronic, progressive, degenerative nerve disease. These are facts. I will have CRPS until I die, hopefully at a very, very happy old age.
Generally, people seem to think “better” means “cured” or “healed,” as if it is a punctuation mark, an end point. In this sense of the word, I will never be “better.”
With CRPS I will have good days and bad days. Even if this nebulous concept of remission manifests, I will probably never be completely symptom-free. This is the reality of the situation.
Facing reality doesn’t mean that I’ve given up, that I am lazy, intransigent, or “negative.” It means that I am aware of what I am up against. It means I can manage my expectations in order to set and achieve realistic goals. It means that I can hope to find peace with this new CRPS version of myself. It means that I can redefine myself and figure out who I am now. And, to me, this ongoing process of striving for improvement, and learning to take set-backs in stride, is much better than being “better.”