After yet another night of painful, restless sleep, I woke up this morning struggling to find any motivation to get up and start my day. I forced myself out of bed and made myself some coffee, as I do every morning. I let my mind go blank as I processed the beginning of a new day. Then, I began silently counting down the minutes until my recently-diagnosed segmental dystonia would overtake my body. It was about 15 minutes.
I haven’t written anything in a while. Part of that has been due to my physical inability to steady my hands enough to write. A larger part of that has been that I can’t bring myself to give much of a crap about anything at the moment. I wish I had the desire to write about the way female Olympians are addressed in the media or the racist vitriol being hurled at Leslie Jones on Twitter. But my mind is otherwise occupied.
Moving to California was supposed to be the beginning of something great for me and Joel. Our move breathed new life into our passions. The perfect, sunny weather and creative energy made me feel alive in a way I hadn’t ever felt before.
But, as usual, my body didn’t let that feeling last long. I began having serious health issues about a month after we relocated. The mystery convulsions that baffled my doctors last spring returned one night as I was trying to go to bed.
It had already been an awful day. I started and left a great job as a production assistant for a design company on the same day. It seemed manageable, but five hours spent hovering over a table weeding designs was far too much for my bubblegum joints. I had so badly wanted to work again, but my body wasn’t having it. My left big toe continuously subluxed throughout the day. The head of my femur pushed so far up into my pelvis I couldn’t walk straight. My joints felt like they were on fire. And then the convulsions started.
I’ve been lucky enough to find an incredible neuromuscular specialist who took me on immediately (anyone who has ever tried to see a specialist knows how rare this is). She has been unbelievably compassionate and committed to solving my issues. In the past week, I have seen her three times, a frequency that is only possible because of her insistence that I be treated promptly. But these visits have all been clouded by the realization that there is, likely, something very wrong with me.
In the past week, I have taken medications designed for individuals with Parkinson’s disease and multiple sclerosis. I was uneasy with the idea that I needed such heavy-duty medications and that uneasiness was compounded when they proved useless against my issues. My doctor has tentatively diagnosed me with segmental dystonia, but she cannot definitively diagnose the cause. In the next few weeks, I will go for a battery of tests to rule out spinal lesions, seizure disorders and brainstem compression.
Until then, I’ve mostly been trying to distract myself from the overwhelming depression I feel as I watch my new, ambitious dream life slip away. This move to California was supposed to be my chance to pursue my most exhilarating goals. But right now, I feel like I just moved to be sick in a different climate.
It’s nearly impossible to describe what I’m feeling. Other people aren’t as accustomed to being sad and uncomfortable as I am, so their knee-jerk response is to ignore the reality of the situation and cover it up with relentless positivity and empty platitudes. Maybe that attitude helps some people, but all it does for me is remind me how bad it actually is.
I suppose that’s better than the people who would simply turn a blind eye to what’s going on with me. Those people who take their discomfort regarding my health issues and bury them so deep they, in effect, cut off all contact with me. The people who don’t know what to say so they opt to not say anything to me. Ever. It’s a common experience among the chronically ill. We are often times shut out because people value their own comfort over a relationship with us.
That’s where things get complicated. I’m an introvert and, as such, I’m pretty okay engaging in minimal conversation with people. But the caveat is that I need to be able to entertain and occupy myself. At this point, I can’t do that. I love writing and drawing, but my unstable wrists and uncontrollable shaking make these tasks incredibly difficult. (I’ve had to write this column in shifts because of the strain on my wrists.) Reading provokes migraines. Cooking has become increasingly difficult (you try cutting vegetables when your arms won’t stop jerking). You don’t realize just how many hours are in a day until you can’t find a single activity to occupy even one of them.
That’s not to say that I don’t find joy. I have the most amazing fiancé I could’ve ever imagined. My parents have taken it upon themselves to help us out during this tough time, and their love and support means the world to me. And I get to play with a dog I haven’t seen in two years. These things are certainly wonderful. But I was anticipating so much more. And it hurts to know that, at least right now, the things I crave are so far out of reach.
Many people experience some sort of quarter-life crisis. Usually this involves some existential dread about their future careers, romances and things of the like. I wish I had the ability to dread those things. Rather than ruminating over what I may want to do in the future, I’ve been panicking over what my body may be capable of doing 10 years down the line. Or not capable of doing.
I don’t have any sort of satisfactory answer for that. I think of jobs I would love to have, and then I start listing off the physical demands. I think about how much I want children and then think about the fact that I cannot possibly put my body through the stress of a pregnancy. I wonder if an adoption agency would even consider giving a child to a woman who shakes so much she can barely floss her teeth.
I think of all the possibilities for my future and, at the moment, don’t see anything viable. I feel like I’m in limbo. And I don’t know what to do about it.
Molly Regan is an improviser and writer in Baltimore. She likes chicken pot pie, Adam Scott’s butt and riot grrl.