I always say "autumn," not "fall," like most Americans do. I don't like falls.
I fall a lot. And yes, I know why. I recently learned why, which is simultaneously liberating and depressing. The “cure” is a craniotomy. Yes, that’s brain surgery.
I have a rare inner ear disorder called SSCD (superior semicircular canal dehiscence). Basically this means there are extra holes in my skull between one of my ear canals and my brain. On both sides of my head.
It's been suggested in the past that my daily dizziness, brain fog, regular vestibular migraines, and anxiety were all in my head. You know, mental health issues. I don't fault my care providers; most small-town doctors have never heard of SSCD, which was only named in the late 1990s at Johns Hopkins, where in a lucky coincidence, is where I ended up before I knew there was a name for what I had.
One of the lessons I learned long ago, after my brain injury, was that I’m pretty damn good at creating compensatory coping strategies. It’s a side effect of growing up in a creative family, I guess.
I shouldn’t run anymore. I broke my nose falling while running four years ago (2019 photograph above), and while I’ve tried to get back into it, I’ve realized the risks outweigh the benefits at this time. This is a hard pill to swallow. I used to run half marathons, 10ks, and even a marathon.
I probably shouldn’t bike on rough paths anymore, either. In 2016, I cracked my sternum while flying over my handlebars.
I hear many of my middle-aged peers say they “can’t” do this or that anymore and relegate themselves to a couch in front of a television, eating processed crap food, and perseverating about the aches and pains of aging and disease.
I cringe every time I hear it.
To compensate for what is no longer good for me, I’ve taken up swimming laps in addition to working on functional fitness with my personal trainer. Personal training is the best self-care investment I’ve ever made. I'm going on 1.5 years, and I am convinced that is the only reason I am so high functioning with a disorder that debilitates others. My brain, ears, and eyes must work much harder than they would if I didn't have extra holes in my head, and functional fitness training can help with balance and ultimately may help prevent falls.
I thought swimming would be easy because I can’t fall while swimming. I’ve always been a decent swimmer…not great, but I know how to do the basics correctly, thanks to my parents insisting on lessons at the YMCA for me and my sibs as youngsters.
I watch the old ladies in their rubber bathing caps and skirted swimsuits effortlessly and gracefully glide, lap after lap, at 6 a.m., slowly and consistently…just like I used to run.
I thought I’d be graceful too.
I’m not. I’m out of breath after one or two laps. My arms are sore.
And yet…I know…this is neuroplasticity at work. One must be willing to look and feel awkward at the beginning. That’s hard. That’s how we make new neural connections.
So awkward I’ll be…until one day, I glide as easily as the 85-year-old grandma in the next swim lane.
Because awkwardness is where growth begins.
I want to effortlessly glide. I don't want to fall, but to gracefully stumble (if that's even a thing) through this SSCD journey. I want my words to help someone else who may be struggling with a vestibular disease navigate the healthcare system and develop their own creative compensatory strategies.
I am going to try to live as long as it's bearable without surgery. There are no other treatments for my disorder. And that's going to require some shuffling of priorities. I am going to be saying no to new freelance work, and social engagements, and of course, I won't be running a marathon anytime soon. This will require a lot of effort because I typically say "yes" to everything and everyone. Please be patient with me. I might screw this effort up sometimes and say yes when I mean no. People-pleasing and codependent habits don't die easily.
It takes Herculean effort for me to stay upright without falling. It takes effort for me to navigate the world when vertigo makes me puke several times a week. It takes every ounce of endurance just to get through a 40-hour workweek. But no way am I hanging up my hat.
There's a strange comfort in finding out that the holes in my head have been causing such chaos in my life...and that I do not have dementia, my anxiety comes from a physical source (when you have a vestibular disorder, your body secretes more adrenaline and cortisol), and that I was NOT born clumsy and miserable (a lie I have told myself and my family has happily perpetuated for 61 years).
Isn’t it beautifully paradoxical that effortlessness requires a lot of effort at the beginning?