Voluntary Scars

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.


5 thoughts on “Voluntary Scars

  1. Connie Nichols says:

    Amy, that is a beautiful essay that explains so much. I have never thought there could be such a perfect reason for a tattoo,but you have surely changed me mind.

  2. Vicki P. says:

    Oh that we could all be so in-touch with our core selves and approach our lives in such in such an affirmative manner! Your ability to continually redefine all that is the true Amy continues to delight and amaze.

  3. Nadja Tizer says:

    I personally love tatoos. I was thinking about getting another one to symbolize getting throught the trials of MS. Now I think I can get through almost anything.

  4. Kath says:

    Hi Amy,
    I came to this blog via mssoftserve after you visited my blog. I have to say I’m blown away by a) what you’re building here and b) by your eloquence and confident way of speaking. You are a star.

    I thought I’d like to comment on this post at a slight tangent in that I’m not going to mention the key issue of tattoos but the issue of scooters.

    My first introduction to one was in the local mall where I was entitled to free use of one while using the mall. A bit scary, what if I meet people I know, what if I can’t drive it, how will it feel to be lower than everybody, what if I want to leave it outside a shop
    Well I have to say this all disappeared into the ether when I took the step of taking my 10 and 8 year old boys with me the first time. They were THRILLED and even though I had to say it wasn’t for them to play on they delighted in my ability to shoot down the mall aisles faster than ever before( they liked to race me) and be able to carry their bags. Most of all I could get home after a shopping trip without being completely wiped out. They seemed unable to see any downside. I was suddenly a really cool mom. I imagine if they were teenagers it wouldn’t be the same.

    Anyway this unexpected notoriety filled me with confidence and I stopped caring what people would think. I have since met a lot of people while using my “mall scooter” and at least one is someone who badly needs to use one but hasn’t got over the stigma of it all. My kids gave me this freedom with their unconditional positive regard and they were young enough to think nothing Mom does could be embarrassing. The oldest is now 13 and he STILL thinks it’s ok in fact prefers me to use one so I don’t get worn out.

    If you’re choosing a scooter take your child with you and see it through their eyes!
    I think I’ll even post this on my own blog too.

  5. Amy, check out my version of your story: http://www.michellebrovitz.com/?p=221

    love yours!!!

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