When I was little, spending a day at a carnival tons of rides on the Tilt-a-Whirl. I loved that swirling in my eyes that continued for a while after I got off the ride, and then I’d do it all over again.
I hate that ride now.
I’m on that ride constantly.
Over several years, chronic vertigo has taken over my life. Vertigo is the illusion of motion when you’re at rest. It’s a dysfunction of your vestibular system, comprised of your inner ear, ocular, and proprioception (balance) systems. What you hear, see, and feel. Any of those get messed up, so do you. Vertigo makes you dizzy, and sometimes you want to puke. Sometimes you do.
My first migraine hit as a senior in high school and left me dizzy and wasted, but this vertigo was an insidious fog that crept in slowly over six years. It’d come and retreat. The next time it crept in further before crawling back. I didn’t know how bad it’d become until two years ago when I got out of bed one morning and watched my room spin upside-down before my eyes. My brain couldn’t process what I saw, and I face-planted and couldn’t get up. That’s called a “drop attack.”
Vertigo doesn’t only make everything spin. You become disoriented, even in your house. For me in happens while cooking because it’s too much to keep track of. It blurs, and I wind up lying on the floor and pray my kids don’t see my like that. I get tired. My words slur. I stumble, and my speech gets halted. I sound like I’m drunk. In the middle of the day. When I’m talking to my agent. Or my son’s preschool teacher. People talk, you know. And it’s all because my brain is so focused on trying to stay up right that it lets go of other functions.
Last September, I went through a battery of tests. Multiple sclerosis. Brain tumors. Lesions. Aneurysms. Meniere’s Disease. Lots of tests few answers.
I had pain, too. My brain didn’t seem to fit in my skull. My writing crawled to a halt. I couldn’t read because scrolling with my eyes brought on vertigo and violent nausea even with medication. Watching the letters pop up as I typed was worse. It got to the point where I was swallowing numerous pills for relief that wouldn’t come. I sought out alternative treatments, which were only Band-Aids.
Severe, chronic vertigo associated with migraines like mine is a “silent” disability, one people can’t see. Many people are compassionate. But others lack sensitivity, assume you’re faking it or just have a headache and will get over it. The worst is the assumption you’re a pillhead looking for a high. “Mom’s got a migraine and is popping pills again.” (Often said with an annoyed eye-roll.) We’ve all heard that on TV or read that in YA novels.
It’d be so much simpler if it was like that. God, would it.
This past Memorial Day weekend marked the first time in sixteen years, since I was a teenager, that my husband Tim said, “Honey, I’m scared.” He didn’t say those words when my parents were dying. He said them now though, and he said them about me. For five days in a row, I’d been sick, curled in a ball, too disoriented to move and maybe perked up enough to update Twitter or Facebook but not much else. I realized that, if I had a regular job and wasn’t a stay-at-home-mom/novelist, I’d be on disability. I’d stopped functioning.
Depression and I are already intimate. Both my parents died when I was younger. They were both physically disabled, and I began to see shadows of their limitations in what I now live with. And it terrified me. I have three young kids who need me, and I could hardly function for them. This disability had made me angry and bitter and sad, and I have always tried to be warm and compassionate—for Christ’s sake, I entertained becoming a palliative care nurse at one point. I regularly volunteer at stable for disabled riders because I love it, but I have far more in common with my riders than I realized. Yet every day had become such a struggle that I couldn’t wait to sleep again. It took years to realize I even had a disability, and it took mere months for it overtake all aspects of my life.
Recently, I began vestibular rehabilitation with an amazing physical therapist. After five weeks of backsliding, she said I had to get my tail in to my doctor, and he got me in for an emergency appointment with a neurologist. I now have an actual name for what’s going on with me.
Even though vestibular migraines are rare, I’d been misdiagnosed because I don’t have a typical case. But it means more medications with side effects like my lower lip going numb or that I have zero appetite. I can live with those things because I’ve been given back some semblance of my life. Pain level is much lower. Still dizzy as hell, but I can cope better. It’s so easy to judge people who have a silent disability because those disabilities aren’t tangible and therefore aren’t “real.” People like me who rely on pain medications and other heavy duty drugs scroll through our Facebook pages and have friends posting about how medications are bad and if people just had the willpower to give up their medicines… and society think you’re just looking to get stoned…It makes your head spin. They don’t know what it’s really like to be in our shoes.
With the pain diminished, I’ve come to terms with my vertigo and limitations. The vertigo is still constant, but it’s not as severe. This won’t last. I’ll acclimate to the medications, and I’ll have to change doses or try something new therapy. I’m still figuring out where my boundaries are before I have an attack—and I’m figuring out how to push those boundaries.