“If you take away my devils, my angels may flee as well.”
~Rainer Marie Rilke, my paraphrase
There was news of a medical breakthrough this morning, and it was relevant to me. There’s a medication that prevents migraines. I don’t say there’s a new medication to prevent migraines, because there really weren’t any old ones: Everything doctors use is off label, which means it was developed for another purpose but was found to improve migraines in some people. In other words, if it works it’s kind of a fluke. For my migraines right now I’m on an antispasticity medication developed for cerebral palsy, and an anti-psychotic developed for bipolar disorder or schizophrenia. I don’t have cerebral palsy, bipolar disorder, or schizophrenia. But those meds help enough for me to work 32 hours a week, so long as I rest most of the other 136 hours. It used to be worse. But it could be a lot better.
When I woke up this morning — with a really bad migraine — I opened Facebook and saw that two of my aunts had sent me the article about this new medication called Aimovig, I read the headline and then ignored it for the rest of the day. I had just been to see my neurologist a couple of weeks ago, and she hadn’t mentioned anything about it. In fact, she’d had me start another off label medication, this one for high blood pressure. (I don’t have high blood pressure.)
I don’t have a lot of hope, and I don’t need much right now. I’m doing a lot better than I was, though it was hard to explain that to the doctor after she’d asked how many times a month I had a migraine and my answer was almost every day. See, I have two kinds of migraines, sort of: An underlying daily mixture of fatigue, nausea, dizziness, light sensitivity, pain, and other symptoms that almost never goes away but that I can function under, and more painful breakout migraines, that are much harder to soldier through. I have the latter about 10 days a month. But I used to have the breakout migraines almost daily. There were a couple of years that I could barely get out of bed, much less hold down a job, exercise a little, and find joy in life. It could be a lot worse.
My dad commented on the link my aunt shared, leaving such a lovely compliment to me and my writing, and said, “I have often thought and prayed about how much more she could do if only she could be freed from these awful migraines.” He and my aunt discussed whether insurance would cover it. But I didn’t think about it much. I didn’t even read the article until later in the day when another person shared it and said if it was true it would change her life. Then I thought: It would change my life, too. But how would it?
I let my thoughts wander to fantasy, where I’m more comfortable sometimes than reality. I can’t really think about getting better — I have to concentrate on getting through each day. But I can fantasize about it, like I fantasize about winning the lottery sometimes, or getting my dream house. What would I do? With all that extra energy, extra time I didn’t need to spend taking care of my high-maintenance head? The answer, in part, came easily: First, I’d exercise. I’d have such a go at that elliptical machine, ride my bike miles and miles, swim till even under the water I could feel my body sweat. I love exercise so much, during and after. I love how I feel when my body is in shape, the muscles under my skin, the strength. But now I get a migraine every time I have a cardiovascular workout. I have to limit myself to 20-30 minutes, and even then I have to walk carefully afterwards to avoid head rushes, eat within half an hour of the workout, make sure I don’t have anything important to do in case I need to lie down. Without the migraines — I’d get in shape, that’s what I’d do. And then?
I think I’d do what I’m already doing. Nannying. Writing. Cultivating friendships. I’d just nanny a few more hours a week so I can start putting money into savings. I’d write more, not just when the migraines allow me an hour or two of reprieve. I’d make plans with friends without worrying about whether I’ll be able to go out for lunch AND go to work the next day. Oh, and I’d actually do some social activism, instead of just thinking and writing about it. Basically, I’d show up more.
Some things I’d hope to keep, like the space that the migraines create to rest my body, mind, and spirit. It might actually be harder without them. I rest now because I have no choice. Maybe I’d fill up my time too much, get captivated by the money I can make by working more and more, spend so much time with wonderful people that I lose the centeredness that being along brings. Maybe I’d lose the drive that having something to fight against gives me. Or the depth of insight that pain offers. Maybe my angels would leave with my demons.
I don’t think so, though. I’ve made friends with both the angels and the demons now. I’ll be okay if this new medication doesn’t work, and I’ll be okay if it does. But I know there are so many people who suffer more than I do, whose lives would be vastly improved. It really could be a miracle cure for millions.
I hope so.
Peace and health to all of you. I hope whatever pain is in your life teaches you what it’s there to teach you, and then leaves gracefully.