You’d be forgiven, after flipping through my blog, for wondering if perhaps this should instead be titled “Why I DON’T Write About My Health.”
Most of the time, I don’t write about my health, because it’d be like writing about breathing or blinking. Most of the time, multiple sclerosis (MS) is just a small part of who I am. And I have far too much pride to consider it the most interesting part of who I am – I’ve spent a lifetime cultivating talents and eccentricities, way before that upstart MS showed up.
When I was first getting sick and getting diagnosed, back in early 2007, I did write a series of private blog posts for friends and family sharing my adventure. Because at that point, all was shiny and new and foreign, and I was hungry to share these strange experiences. Over the course of just a few months, I had a lot of firsts:
- first visit to a neurologist
- first MRI
- first lumbar puncture
- first time I had a headache so bad it made me puke
- first blood patch
- first diagnosis of an incurable disease (being a smartass isn’t an official diagnosis, Einstein)
- first time I made my parents cry (since I was about 17, anyway)
- first time asking for time off work for doctor appointments
- first time choosing to find a specialist
- first time doing IV steroids
- first time giving myself shots
- first time somebody told me to my face that they were praying for me
- first time understanding that pity is a vile and odious thing
And on and on and on. I was in a hurry to understand what was happening and also to learn from others who had gone before. But I had nothing to contribute, so I didn’t write about it. I instead became a champion forum lurker, reading other people’s posts about their trials and tribulations and triumphs.
Hearing all their stories lit a carpe diem pilot light in me. At age 27, I got busy living my life on purpose, because Fate had played the wild card and my future would be anyone’s guess. I didn’t want to look back on a bunch of regrets. I cut my hours at work and started a masters program. I bought a house. I finished the masters program and landed my dream job. I got promoted at my dream job. I got blinded by a brain lesion and had to quit. I mostly recovered and stayed home.
Through it all, I also kept breathing and blinking, because that’s life. I kept having MS, because that’s my life.
One of the blogs I read had a great post recently about the relationship between being lucky and working hard that really resonated. She was writing about her experience in making and birthing a baby, but there were strong parallels to my experience with health and illness.
Attributing all your success in having good health – or a good day, or sufficient insurance benefits, or a personal breakthrough – to good luck sounds like bragging. Anyone will tell you that it’s just dumb luck, and you’re privileged to get a flicker in your favor. Try not to jinx it by getting used to it, because things are likely to change. And if you have a chronic, degenerative disease, they’re guaranteed to change, and not for the better.
But I have been lucky: to have a strong support system, to have insurance coverage, to have a relapsing-remitting disease course. And in a million little ways, grace has shown up to just about balance out the bad. I didn’t cause it and likely don’t deserve it, but I’ll take it.
What I”m figuring out is that you can’t avoid driving the boastmobile even by claiming all your success is due not to luck but to your personal efforts…because that sounds like bragging, too. And for a long time, I couldn’t own up to the work I was doing, even though I met it every day with a life-or-death seriousness.
But I do work hard. I work hard to live the best life possible with MS. Sometimes that has meant eating less and exercising more, so that I’d be stronger and more relaxed and more functional. Sometimes it has meant surrendering the money and social validation that comes from full-time work, so that I’d have less pain and more energy to be present for my family. Sometimes it means drawing boundaries around the things I will and won’t do for others. Sometimes it means speaking up to remind my doctors that I am a unique person with a not-quite-typical disease course and that I won’t settle for the autopilot version of their advice.
All the time, it means I am pushing back against the forces of inertia, complacency, and condescension – inside myself, against my disease, and from society at large.
I don’t want to be anybody’s statistic, and that takes work. And luck.
I don’t want to be that fat lady in the wheelchair at Wal-Mart, and that takes luck. And work.
In most ways, I’m stronger than I was before I knew what MS was. And I think that’s one of the reasons I’m writing about my health more. I’m lucky and I’m proud. And I remember what it felt like when I was neither. I learned, though, that optimism and strength can be taught and learned through a loving smile, a caring touch, or the written word.
Lucky for us.