I am lying on my parents’ bed, half on my back, half sideways, trying to balance the computer while holding my body at an angle that at least minimizes the throbbing pain. It’s August 4th. I’ll tell you why I’m counting the days in a minute.
I drove up here yesterday, after three long nanny days in the heat and humidity, to supposedly help out my parents as my dad recovers from a fall out of his wheelchair. Instead I’m lying here watching my mom do all the work.
There is a lot of pain. Then there’s the nausea, vertigo, sensitivity to light and sound. I have meds that might cut the pain a little bit, but I have another full week of nannying before I can refill my prescription, and only three doses left, so I can’t waste them on a weekend. Plus there’s a thing called a medication overuse migraine, and I took meds all week to get through the nannying.
I’ve written all of this before.
Right now I’m just thinking about what a waste of a day this is, and how many days have been similarly wasted. I have things I want to do. I want to do my laundry and my parents, and help my mom sort through what needs to be done to apply for a home aide. I want to write the essay that’s been growing like a baby inside me for a month now. I’m past my due date, but I’m too tired for labor, so my belly swells and swells.
I want to move my body, to feel fresh air, to get my heart rate up, to lose the twenty extra pounds I put on last year, that I can feel wrapped around my bones and muscles like extra layers of clothes. I want to go to the lake that’s only a mile away from here and swim. It’s August 4th and I’ve only been swimming once so far this summer, back in June, in an indoor pool. I love swimming. I love exercise. I also love lazing around the house some days, but I’d like it to be because I’m in the middle of a good book, or because I biked twenty miles the day before and need a break. Not because standing up sends the blood throbbing to my head, and spins the world around me like a tilt a whirl.
My next neurology appointment is August 17th. I’ve been trying to get in earlier, because I spoke to my doctor and she said she thinks she can get the prior authorization for my insurance to cover the new migraine medication, but she wants to see me in person first. That was two weeks and maybe four migraines ago. I’ve lost count. Two weeks to go. How hard can it be to wait another month, when I’ve had these migraines since I was young? But each one is just as hard as the last. Pain, nausea, boredom, frustration. And now — hope. But a mixed hope.
It’s a hope mixed with a kind of pre-survivors guilt. What if I get better, but others don’t? What if this is it, a real treatment finally for migraines (which it seems like it might be) but meanwhile those with fibromyalgia and depression and the terrible illness that debilitates one of my best friends and the degenerative muscle disease that has put my dad in a wheelchair continue to suffer? And what if, after all of this, it doesn’t help anyway, or I’m one of the very rare people who has a bad reaction?
I have an essay I want to write about that, too. But right now I have to close my eyes, because these few paragraphs were written at a cost. Don’t worry about me, I’m okay. I know what I need to do to take care of myself. I hope to be back soon, with a bouncing baby essay to show you, forgetting the pain of labor in the joy of new creation.
In between migraines I wrote this piece for Sojourners on Lin-Manuel Miranda’s tweets, and Lin said I made his day!
Ooh, this made my day, thank you.
— Lin-Manuel Miranda (@Lin_Manuel) July 16, 2018
Check it out!
I also loved this other Sojo piece by Joy Netanya Thompson about Queer Eye, which Bobby Berk retweeted! What a week for Sojo contributors!
♥️♥️♥️ this is a good read. https://t.co/G8LBro6VlA
— Bobby Berk (@bobbyberk) July 26, 2018