I spent a good portion of Thursday crying. And even more of Friday. They were the kind of tears that sneak up on you. You are sure you have it all together. You have faced your demons and you are sure that you are A-OK. Then, BAM! Hello tears. Ugly, silent tears. At your desk. Over an email that says thanks. Or a meeting that checks in on your workload. Hello feelings that create a spectacularly terrible day.
Being sick, I have lost a lot. And most days I am ok with the ways that my body has failed me. I am ok with the fact that regular pants are painful. I can handle being at an event where there is no food that is safe for me to eat, usually with a smile or a laugh. I am usually cavalier about the implications that being a cyborg has for me. When your whole lower body is tingling – not in a good way – and ruins the moment, we can swap stories about robot issues).
I try to live my life without these things weighing me down. But then, I see a doctor. And the optimism of treatment tempered by a harsh reality. Something else that makes me and my body different. Something else that isn’t the same as it used to be. Something else that isn’t going to come back.
I lost a lot of fine motor control back in college when I was fighting the first battle against my body. In high school, I loved drawing and painting, I went to college to study fashion design – there was a spring break that I spent tailoring a suit just for fun. I was drawing or sewing for 75% of my free time when I started to notice that with practice, I was progressively getting worse.
Eventually, I lost enough control for it to be a problem, but by then I was done with going to school with all girls anyway. I went on and studied French. (C’est si bon, ca). My sketchbooks were in the garage at my parents’ house collecting dust.
When I was 24, I was playing softball with some friends, my hands turned stiff and numb. In the car they completely locked up. In what was one of the scariest days of my life, I spent 12 hours in the emergency room while they searched and searched for a reason. Out of nowhere, sometime after I had puzzled every specialty in the hospital, movement started to come back. The answer? I had hit a toxic level of a drug I had been taking for nearly 6 years in my blood and not taking it for 12 hours started the blood level dropping.
I changed my drug regimen and slowly I returned to normal. Well, normal-ish.
I found out last week that what didn’t come back isn’t going to. I am not going to draw like I used to. It is always going to feel like I am writing and drawing with ski gloves on my hands. What I see might very well always seem as if it is through a slight haze. It was pretty much a big blow.
So there was ugly crying. And there was a cupcake for dinner with a friend. We laughed about the things our bodies have taken from us. I even cracked a joke about robot parts turning on at inopportune times. I don’t know if it was the cupcake or the patient understanding of a friend, but the heavy weight of loss seemed to get just a little bit lighter.
And in the midst of it all, I launched a new blog. Mostly because I regularly need pep talks to get me through the struggles, so if you get a chance, check out the Chronic Positivity Project. I like to think it is pretty swell.