A Review on the Rumpus and Degenerative Demyelinating Disease

First, the good news: a new review of Unexplained Fevers is up on The Rumpus. Thanks, Rumpus!

So, the bad news that I’ve been referring to in the last few months is this: I’ve seen two neurologists and gotten an MRI, and it appears that there is a consensus that I have some neural lesions in the brain, and what is right now being referred to as degenerative demyelinating disease. This means something – probably an autoimmune problem, maybe some problem with the way my body processes B12, maybe multiple sclerosis – is making my myelin sheaths deteriorate. Mostly, so far, this has impacted me in motor skill areas – if you’ve been around me in the last few years, you may have noticed a wheelchair, a cane, or just an inability to climb stairs – the symptoms kind of vary by day – and can be measured in things like weird reflexes, numb hands and feet, that sort of thing. The symptoms weren’t obvious…the numbness in hands and feet, dropping things, injuring myself falling a bunch of times, fatigue and new headaches. It took me a while to even get motivated to get myself evaluated (with anaphylaxis, yes, you get yourself right to a doctor, with numb feet and stumbling – it’s more, meh.) The good news is, both neurologists think they’ve caught it early, and one of the two neurologists thought maybe we could start a treatment plan right away. I’m actually feeling more optimistic now than I have in a few months, because being told that you have something wrong in your brain when you’ve relied on your brain for a long time to be the one part of you that works really well was a bit of a shock, but now it has worn off. I have friends with MS and other neurological disorders who have been super supportive and helpful, I’ve read up on the subject (really starting from zero on this one – I knew way more about my genetic bleeding disorder and allergies than I did about the neurological systems – must have been asleep during that part of my biology classes). I couldn’t talk about it for a long time even with my friends and family, and I wondered about “coming out” here about this here on the blog, because what if some publisher didn’t want to work with me because of it or what if it cost me a job, but then I thought, it’s a bit more empowering to let people know – hey, I can’t climb stairs because I have this kind of  disease rather than just vaguely mumble about it forever, or refer darkly to “health problems” on the blog. (Oh, and if anyone has been paying attention to the blog up til now, you already know I’ve had some health issues. I mean, I named my last book “unexplained fevers” for a reason. It’s not like I was some kind of Olympic champion, racing up and down stairs with sacks of potatoes before this. Ha!) So now you know. If you’re a publisher or an employer, I promise I can still sell books (as well as I ever could – it’s poetry!) and work just the same, as long as you’re not asking me to do toe curls or stair races. I feel hopeful that the new treatment – it will take a bit of time to tell – will halt some of the further damage this kind of disease could cause, and I’m game for gambling on treatment rather than sitting on my hands.

This is not necessarily poetry related, and I don’t want to define myself by this or any of the other weirdo health stuff I have. I am maybe a mutant, but I have a lot of good things in my life too. I have a kind husband who has been doing most of the major housework around the house, the carrying and lifting and chopping (all not great ideas for me these days.) So I may not be a major tap dancer in years to come – that’s okay with me. I was always happier curled up with a book anyway.