Shake It Off: In Which I Reconcile My Inside and Outside

I am generally a good record keeper. As a kid, I always had a wall calendar to keep track of rehearsals, club meetings, and sleepovers. I’ve kept a diary on and off since elementary school, which allows me to go back and read just how mad I was at my mom for EVERYTHING (sorry, Mom!) and how heartbroken I was over Mark, Benji, Joshua, etc. In my college years I created a spreadsheet of all of the boys I kissed with important details like our age difference and whether there was a repeat performance.

What I’ve never kept good track of is my MS. Who wants to end her day reflecting on each eye twitch and bathroom mishap? I can track some milestones through old emails or their coinciding with other unforgettable events (e.g., Nipplegate 04), but so much of the past 18 years of slow decline is hazy. And it’s no wonder. Adult life lacks the clear markers that younger days have. I know my Mark heartbreak occurred sophomore year because I sat next to his new girlfriend in English, but there rarely are context clues for when each of my symptoms first appeared. 

I do have documentation, though. Starting in 2010 my stepdaughter and I made a YouTube cooking show, Gettin’ Saucy with Rebecca Scott, which provides some broad sketches of my decline. 

Hand tremors? There from the start. I quickly figured out that fiddly things like peeling garlic needed to be done off camera.

In 2012 we filmed a Christmas episode that had me in hysterics (the bad kind) over my lumbering walk at the beginning. Did I really look that lop-sided? Was that what Neal, Charlotte… OMG, my coworkers saw every day? Watching it now, I see myself as a caneless badass, but at the time I saw a sad, crippled woman. I didn’t *feel* sad or particularly crippled until I saw myself as the world did. I was shaken.

So I stopped walking on camera, which meant I could stop thinking about my evolving body and my rapidly spiraling sense of self. Crisis averted. Phew.

Then, two years later, I lost all interest in filming after our Super Bowl episode. Neal and I open it doing commentator schtick–blazers, hands folded on a ”desk”, overly serious. As usual, Neal eclipses me (this is why he only appears rarely on the show), but I hardly noticed. I was too busy being horrified by how much my head was shaking. I knew it shook sometimes, but who was this palsied young(ish) woman? And OH MY GOD IS THIS HOW PEOPLE SEE ME NOW? 

I brought this to the attention of my then-neurologist Dr. Mora, who sent me to Dr. Bahroo, a movement specialist. At my first visit I learned that most people with MS have a yes/nodding sort of tremor, which is rhythmic. Mine is a no/right-to-left tremor and jerky, which means something else is going on. Dr. Bahroo filmed me and then played it back so I could see how my head was both rotated and tilted, which is how my cervical dystonia manifests itself. The tremor results from muscles on opposite sides of my neck and shoulders playing tug-of-war. 

Here’s the video from my first appointment with Dr. Bahroo.

Yikes, right? I had been in my job for nearly a decade at that point, and my body was already whispering “psst, your on-your-feet event days are numbered.” Watching the video back, I remember thinking, “There is no way in hell I can present myself like this in an interview!” Never mind that this was already how clients, coworkers, and family saw me.

Something had to be done, and Dr. Bahroo was the man to do it. We made an appointment for Botox injections in my sternocleidomastoid, splenius capitus, levator scapulae, and trapezius muscles. It was painful but by no means unbearable, totally worth it for the promise of a steadier head.

Here’s the video from 12 weeks after the injection.

Improvement! Wow. I was stunned. And hooked.

I now get Botox in my neck (and legs–a story for another day) every twelve weeks.

While this tale of tremors has a happy ending, it has me thinking about how jarring it is whenever we (MS afflicted or not) learn that our insides and outsides are mismatched. We find that first gray hair, which is followed by countless others. Our jeans don’t zip with the ease they used to. Our phone camera opens to selfie mode unexpectedly and we wonder who that tired old person is. Inside I am still the sassy slim 31-year-old who could leap up to shake it on the dance floor the moment Miley utters “I’ve got my sights set on you.” Outside? Well, if I can get to the dance floor, there will be shaking, but it’s unlikely to be intentional. 

Life, like MS, is a degenerative disease. And if we want to live fully as the years wear on, we have to find ways to accept our changing bodies with minimal dis-ease. That may  mean splurging on a sassy purple rollator and some fancy canes to make sure the world knows you’re stylish in addition to gimpy. Or throwing out those dresses that barely zip and buying one that makes you feel FABULOUS.

Me, I’m distracting from my greys with some fuschia. The sassy slim Rebecca inside me wholeheartedly approves.