While I would never wish any kind of chronic disease or condition—physical or mental—on anyone, I sometimes wish my condition could be seen. Maybe I just wish I could be seen, but then again, part of my problem is that I can’t even see myself anymore.
I have had the explanation for this down pat for over thirty, maybe thirty-five years now: “I’m really sorry, but I have a really bad migraine and when I get migraines, I get neurological auras.” One is called aphasia. What happens is that the part of my brain responsible for speech doesn’t work right. When it’s really bad, somebody will say something to me and they sound like adults in a Peanuts cartoon. You know, ‘Wah, Wah, Wah.’ Or sometimes I get a lot of what they mean, but certain words just make no sense whatsoever. And, of course, I have the exact same problem trying to translate what I want to say from ideas into words.
“I hope you don’t mind being patient. Sometimes I have to play games with my brain to come up with a way to communicate. Thank you for being so understanding.”
People are generally very kind and compassionate. Most people have had bad headaches, and a surprising number of people have either experienced migraines or are close to a migraineur. It’s good know that people will go out of their way to help you when you need it.
Unfortunately, there’s a difference to my current migraine. Most migraines last less than seventy-two hours and, while people with chronic migraines get at least 15 migraines a month, many people enjoy some time pain-free, even if it’s only a few hours. However, I have the extremely rare unrelenting migraine. It’s not just that it’s lasted nearly three and one-half years or that it is likely to last another three to ten or so—it’s that from the moment the migraine started, it hasn’t stopped. It’s 24/7. Not just the pain, but also the neurological auras and the other fun migraine things, like extreme sensitivity to light.
The hardest part for me isn’t dealing with chronic pain; I started getting severe migraines before I was seven and I’m a hypnotherapist. I can manage pain. What’s difficult is accepting that the person that was Susan Franzblau no longer exists.
My spare-time reading used to be catching up from the first English novels to the present. (It’s too difficult to read what for me is a normal book, that is, one written in the late 1700s or early 1800s.)
Part of my mind is gone. I simply don’t have access to it. I’m a writer who can’t always understand what words are. The job of a hypnotherapist is to comprehend their client’s inner language. If I can’t understand my own, I can’t do my job.
I can still write, only not like I used to. (I once penned bizarre but well-written science-fiction, fantasy, and speculative short stories.) I can edit and proofread. I even can pull off a short nonfiction piece, but it takes ten times as long to write because I get so confused. And I don’t have all of my words.
Now I try to write romance novels, but I’m not really a novelist. This isn’t my genre. If I were still me, it would be serious work, and also a bit of a game to see if I could get this rather formulaic genre right. It’s so potentially lucrative and I hate being on disability.
There’s nothing harder for me than to get something like mail from Medicare, Social Security, or anything business-related. In the past, I could set my brain on ‘Government BS’ and proceed to break it down, just like I did with business-related contracts or client-therapist agreements. Now, even if I can suss out the meaning, it’s all just gobbledygook on the page.
From the time I was very young I was in all the gifted programs and could read, write, and explain myself extraordinarily well. Now I can barely remember what that was like. I still have my same sense of humor that ranges from silly to sarcastic. I get irony. I still understand the things I learned BM (before migraine) with great depth, but as far as facing new things . . .
I’m working on my latest novel. I knew all the levels and connections, but those people, the plot, and the world they live in are off somewhere in the fog. And the subtleties that I loved, the facts to be revealed to the reader, and the truths that readers must slowly uncover for themselves, they just glimmer with their sharp-edged honesty and then they’re gone. Some days I think I have it, the whole story with its edges and shadows, just like I normally did when writing. But then the sense and the truth slips away before I can put much of anything down. It rolls away into an ocean of words that make no sense any more.
Which is pretty much the way I feel about the person that is me now.
Susan Franzblau is currently convalescing in Vermont’s Northeast Kingdom with her lord and master (a mostly black cat named Raisin) while waiting for Western or Eastern medicine, luck, or chance to end an unrelenting severe migraine. In her copious amount of spare time, Susan reads, visits doctors, reads, goes to her acupuncturist, reads, watches TV, plays Sudoku, reads, beta-reads/edits/proofs colleague’s work, and when the migraine eases up enough to let her think clearly, Susan writes sexy romance novels under a pseudonym and designs fun and comfortable clothing derived from photos of nature at www.vermontseasons.net.