I have never thought of my life as being particularly terrible. It’s hard and it’s complicated, but I don’t think it’s bad. Like I have to ship 20 lbs of medical supplies and IV solutions on ice to the other coast but I get to go to Seattle and have a great time. Complicated. Not bad.
I ran into someone at work today that I only see once a month or so. I caught him up on my recent symptoms and general medical happenings. “You seem to be dealing with it very well,” he told me. “I suppose,” I replied. I never really know what to say when people say that to me.
I thought about our conversation on the train ride home. I thought about how my life must look to other people. It must look overwhelming and scary. It might look a little sad.
People tell me sometimes that they don’t know how I do it. I mean, yea. Me either, some days. But really, it’s not like that. I didn’t choose this life. I just have it. If you woke up with a chronic illness, you would do all these same things, too. There is no choice involved. You do what you have to in order to survive. A lot of the time, that means ignoring all the ways in which my life is unlike anyone else’s.
There are days when I feel the weight of my illness in every muscle fiber, every thought, every intention. And sometimes on those days, all I can do is take medication and sleep, the pain and nausea and exhaustion too much to be productive.
But some days I think about these people who think that I’m brave and think that maybe I really am. I get up and put on a pretty dress and twist my red hair into a knot and sing along to Rancid while I put my makeup on. I go to work and eat even though I know it will make me puke and walk outside even though the sunlight makes me feel like I’m wilting. I see my friends and go out and enjoy my life. When I can finally take pain medication and crawl into my bed under my heated blanket, I feel like I accomplished something, for all of us.
On these days, my bravery shows in my happiness, I suppose. It shows in the fact that even mast cell disease cannot stop me from enjoying my life. And I never really thought about it, but that is a choice.