I got to be myself for a few hours Saturday night. I drove the convertible with the top down and the radio way up. I sang along with Dave Matthews, falsetto and facial expression included. I sang so loudly I made my throat hurt. I danced in my seat. I laughed when other drivers pointed at me.
Then the migraine hit and I sobbed, knowing that it may be months before I get another glimpse of this wonderful person I so rarely get to be.
I miss myself so much.
For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.
- Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
- The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
- The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.
Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.
“I’m back,” I thought as I wrote Migraine’s Not the Boss of Me. “Kerrie’s back,” Hart said to me after reading In Gratitude for My Imperfect Body. Neither of us were excited merely because I’d posted or even that I’d written about feeling better and practicing yoga. We were both struck by the style in which the posts were written — we both heard my long-absent “voice.”
When I began to write last week, I experienced the same uncertainty as when I first started blogging. I felt awkward and unsure about my writing; not convinced I was presenting my thoughts accurately or representing my ideas in the “right” way. (I think this is pretty common when someone publishes their writing to a new audience.) My nervousness eased when, with Hart’s confirmation, I saw I’d fallen right back in as if I’d never left. The pile of draft posts I’ve written over the past few years is entirely different. Even the ones I deemed complete weren’t publishable. They all sound flat and hollow. There was a spark missing in those mediocre drafts.
There was, I realized in a sleepy haze in the middle of the night, a spark missing in my life. I rolled over, barely awake, and smiled as I thought of everything I could do today. I feel like I have options for the first time in years. The available choices in a day haven’t really changed — I could blog or cook or craft or clean — but anything seems possible and, even better, exciting.
I can speculate on reasons for this shift: Migraine has less of a physical, mental and emotional impact than it did. The episodes are less frequent and less intense. I am able to recognize the accompanying emotional fluctuations as a symptom of the illness instead of being carried away by depression. I no longer feel like migraine will suffocate me.
Whatever the reason, I’ve got my groove back. The passionate, creative, enthusiastic woman I thought I’d lost to migraine was only obscured, not destroyed. I’m glad I’m here to celebrate.
For many years, I felt as if my body had betrayed me. The physical exhaustion, mental fogginess and excruciating pain of chronic migraine smothered my energetic, spirited personality. I was young and should have had strength and stamina, but was instead trapped inside a broken body. In believing this, not only did my body appear defective, so did my entire self.
Tired of being angry with my body — and, by extension, myself — I focused on everything my body does well, like walking, breathing, circulating blood. From this view, the constant, mundane tasks to which I give no thought become small miracles. Yes, my neurological system misfires regularly, but that this complicated series of systems works at all is far more profound than the frustrations with its quirks.
How could my body have betrayed me? There is no contract, no guarantee that a person will be healthy and pain-free. In fact, the expectation that a body should behave perfectly has come to seem absurd. The human form is a complicated piece of machinery; any one body is bound to have some flaws.
With my new perspective has come an unexpected gratitude: I am now thankful when my body aches after I’ve been laid up with a migraine for a couple days. That deep itch to move and stretch, to use my body instead of just inhabit it, reminds me how resilient this sometimes bedridden body truly is.
Tonight I will go to a more strenuous yoga class than usual. My movements may not be as effortless or graceful as other students’, but the mere fact of my participation is a greater triumph than I could imagine a month ago. I will stretch and twist, bend and balance from the tremendous strength that I now know lies within my beautifully imperfect body.
After a brief migraine respite (by “respite” I mean a few hours each day in which I can cook, run errands, etc. even though my pain levels hit at least a 7 most days), I’ve been back in Migraineville since late March. The last few days have been decent, yet I’ve been reluctant to return to the blog. An increased heart rate and shaking hands betray the nervousness I feel, though I can’t locate the source of it.
As cathartic as the blog has been, I suspect I am reluctant to return to the place where so much of misery is stored. [cue tears] It is difficult enough to look at the migraine diary I’ve kept since February and those are just numbers. I don’t have to re-read The Daily Headache; I know it contains five years just like the last few months. This pain I fight to escape isn’t any better now than when I began.
Blogging also reminds me of the many plans and hopes I have for The Daily Headache. I still believe I will eventually get that newsletter/support group/coaching going. Maybe I’ll even revive the forum I had to abandon in its infancy. Right now it feels far more likely that I’ll be thrilled to get a post written every four months. Kinda like the last two years have been. I can’t help but feel demoralized.
You know how hard I strive to keep a positive attitude. Blessed with a natural optimism, I’m generally fairly successful. But I still long to have my life back.
P.S. My mood was much improved within 30 minutes of posting this. Must be that catharsis thing I mentioned.