June | 2009 | MS~LOL: Multiple Sclerosis a Life Of Learning

Most people move without thinking much about it. The turn of the head, the lifting of a foot, crossing a room to get the newspaper- each done with the ease and brilliance of all the body’s systems working in concert to achieve a simple goal. So when that which is involuntary becomes impossible – it affects more than the nerves and muscles that are working hard to regain their normal role. It is more than that which can be scanned or examined. And while explorations of the mind will get you closer- it remains untouchable. In fact many of the nuances are unclear to the person who houses the defective control system that is known as MS.

So when the dizziness I’ve been living with since December 2007 began to increase, I didn’t think too much of it. Every day brings about a different experience of how I interpret and move in the world since that winter episode a year and a half ago. While I may wake up dizzy-free, the sensation is usually found not long after by moving in ways that are subtle and hard to predict. It has become the most visible challenge of my 21-year MS ride. One that forced me out of the closet with a walking stick- in to the role of an MS educator of all those who didn’t otherwise know. And while I have found surprising comfort in that new character – I’m constantly reinventing the part, rewriting my lines and finding my place in a play that is different every day. And in this re-staging, I consider motion.

The language of motion changes in me at every moment, in what is spoken out loud in my movements, or silently in the evolution of my awareness. It is a constant monologue. I have limits in how I move in the room that are exaggerated when I step out my front door. But the script of my inner workings know no bounds. So while at most times I can’t remember the lines required to make a simple gesture easily performed by the entire audience, I soar on the inside and thrive in my limitless awareness and understanding.

As I take my fifth steroid IV treatment, for an attack that crossed my 41st birthday/ 21st anniversary with MS, I wonder how fluent I will be, and how much my dialect has changed. With these high doses coursing through my veins, I find synthetic energy that is both wonderful and frightening. I’m no longer searching for the words and expressions to make simple movements across the room. And while the dizziness remains, I search for an interpretation that will allow me to get back to where I was before this episode. Though I know I must also consider more challenging thoughts. I may need to start with a blank script and a different role in this new production.

It’s probably not a stretch to say that when most are diagnosed with MS their greatest fear is not being able to walk. This was certainly true for me. At that time I was a twenty-year-old film student. I edited in my mind all the most dramatic scenes of what my future held. It was a veritable clip-reel that I played when I was uncertain. I was not empowered then, I did not yet know what I was capable of living with or how I would cope. I crumbled at my coming attractions with the familiar baritone voice-over that started with “In a world…” and ended in total desperation. As the years went by, I would direct a more effective promo to provide support and backbone as opposed to a punch in the stomach. And though I have a more practiced place to go to when these moments recur with my wavering abilities, that original clip-reel still plays silently in my mind’s dark theater.

Now as I’m working through the logistics of getting an electric scooter, I am struggling with the pain of a compromised identity. Seeing myself in a chair of any kind brings out this internal film for its much-awaited premier. And even though I’m only planning to use this scooter to be more involved in life, I can’t ignore the sold-out theater of Amys nodding their heads and smirking at the predictable ending.

So, I need to counter with an indelible marker. Taking back the piece of my identity that was sucked-up by fears that have lived in me since June 21st 1988. Taking back what’s mine from the walking stick or the scooter that make me seem definable. A voluntary scar to counter the multiple scars that my immune system is inflicting on my brain, my spine and my sense of self. MS may claim parts of my identity through the symptoms that compromise and limit me, but I strike back with who I am on the inside- in addition to the neurons, the myelin and the misguided immune system. In doing so, I too have the power- to declare what defines me beyond the first glance. A tattoo was just what I needed.

When I met my now husband he already had three tattoos. I insisted that had he met me first, he wouldn’t have gotten them. It was against everything I believed in. Being someone who is constantly evolving, it didn’t make sense to me. How can one commit to an image that will represent them for their entire life? It denies growth and change- something I feel like I do weekly. As with everything- I am, shall we say, expressive. I didn’t hide my feelings on the matter. So, when this very verbalized opinion did a complete 180, it was fully in Keith’s rite to require me to eat so much crow that I could no longer call myself a vegetarian. 🙂 But lucky for me, he’s not that kind of man.

After I gave birth to my daughter I was forever changed in ways I could not have imagined. And when the twin towers fell 16 days later I longed for something completely permanent. When my dear friend Linda was considering a tattoo, I jumped at this additional symbolic opportunity in getting one that matches hers and I’ve never regretted it.

Not long after that, I designed another tattoo. This would turn out to be the voluntary scar I needed to empower me. It represented more directly my permanent love for Keith and Madeline, not only in its constant presence on my body, but also in its design – an infinity sign with our initials. While I hoped Keith might be inspired himself, he was emphatic (in his subtle way) that he was not interested in getting another tattoo. (No symbolism there!) And though I had originally designed a matching one for Linda and her loves, she is no longer in the market either. I would have to go this alone. And in that, it presented a much greater symbol, one that is all about me and my need and fear of permanence. That it happens to be very cool doesn’t hurt- beyond the initial needles (another thing I’m not a stranger to!).

So I’m feeling a reinforcement in this tattoo. It reminds me that I’m permanently me- no matter how I appear to the rest of the world, or to my theater-going self from 21 years ago. And though most can’t see it, on the small of my back- I know it’s there- and anyone who cares to take a closer look may also notice it… and see the person behind the scars- voluntary and involuntary.

Thanks for reading.