A Genetic Predisposition

Since the time I began to carry a walking stick I’ve gone through some remarkable emotional journeys. What at the beginning compromised my self-image became something entirely different. Before the stick, many had no idea I had MS- or what MS is for that matter. Announcing to my world that I struggle beyond what can be seen at a first glance, gave me the opportunity to educate. It also gave me a chance to represent; showing that some people with MS are walking invisibly among us.  What I feared at first became an empowering experience that keeps on giving. And thus is the reality of living with MS. I’m constantly living through symptoms that I never imagined I could handle. So when this experience – using a walking stick for balance and to avoid tripping- and falling- turned out to be so much more than that, I shouldn’t have been surprised.

•••

I’ve always been compared to my mom. When I was growing up no one could tell our voices apart on the phone and the “Oh my god, you look just like Vicki…” was a constant chorus at annual family events. As I got older we heard the comparisons more and more. When we both chose the same short hairstyle, the similarity was uncanny.

My mom has always been a fireball. Not only does she have more energy than the Tasmanian Devil but she also has the inspiration and drive to make most anything happen. Her talents are endless; from cooking, to drawing, painting, clay working, computer designing, everything she touches is stunning. And of course she does not recognize this. (Wait a minute… this reminds me of someone… ) She gives new meaning to the word creative and it explodes all around her. When I was growing up she was a puppeteer and art teacher and thus our world was filled with a creativity that made everything more special. She put little drawings worthy of framing on our lunch bags. Each one, folded and stacked in my 4th grade desk; an archive in the making.

Being a child of such a super-woman made for a hard act to follow. And while this comparison was self-induced-  I was intimidated by her natural ability. What I didn’t have in conventional artistic talent, I later found in filmmaking. It then became clear to me that the creative environment I was raised in, laid the foundation for my own expression. And though we don’t share the same energy, “enthusiastic” is an adjective that often falls near my name. We both got a piece of that gene.

When I was diagnosed with MS at 20 years old the internal comparisons came to an end. This label suddenly separated me. I had a new path with uncertain obstacles. From this point on, I could only be me.

In the beginning MS marked me with intense fatigue. And in doing so, my personality was threatened. It’s hard to explain, but I will try…I might be sitting at the table after dinner and where I would normally jump up and assist in the clean-up, I could only sit. Even lifting an arm requires energy when you have that level of fatigue. Even thinking requires energy. My entire presence changed. Truth be known, this is the scariest part of my MS journey. Though I continue to manage my MS in the most positive way possible, I no longer held internal expectations that any child finds in their parent’s shadow.

As the years passed I realized that in some ways MS wasn’t all bad. It requires me to slow down how I live life. This reason for not doing a hundred million things at one time, allows me to see and feel the moments that many miss. And as I have watched my mom’s continued energy and accomplishments I secretly (or not so) hope that she too would chillax a little more.

When the walking stick became a permanent fixture in my every step, I felt odd going places with her. This wasn’t entirely a new feeling. I think as my health became compromised my need of her support increased at a time when I would have been very independent. She is the one carrying the heavy stuff, offering me a seat when there is only one, or dropping me off near a store so I need not walk too far. I felt self conscious when we were in public for all to witness this paradox.

Overtime my connection to her has maintained its significance. When we purchased a house together (with our husbands!) we set up a situation where we could come to each other’s rescue easily and often. And while many of my friend’s parents are retiring, my mom has only expanded her involvement professionally, artistically and personally. So at this point in our lives the paradox of my visibly challenged health is even more striking.

Then everything changed.

My mom’s ticket to a low-key-life like mine, came in the form of a diagnosis. Plantar Fasciitis – a chronic condition that causes dramatic pain in her feet. Although she kept it from me at first… not wanting to complain with all that I have on my plate, it was quickly evident that she was in full coping mode. And this gave me an opportunity to see where my abilities come from.  I got a first hand look at the stoic coping that I do, 24/7 exhibited in my mom. For so long my MS has separated me from this comparison, now finally it comes full circle.  And wouldn’t you know it? My mom started using a walking stick! Geez… talk about a full length mirror!

When she went on a trip to Great Britain over the summer she purchased some better-for-your-feet funky shoes (in a cool trendy way-as opposed to the old stodgy way) and a walking stick which made her pain more tolerable. She is amazed how much a third connection to the ground takes pressure off the first two. And thus, she learns from me.

I didn’t think too much of it, until we took our first trip together. Venturing out to peruse the Montclair Farmer’s Market. There we were, two women looking oh-so-similar walking with canes. It is hard not to consider how this looks from the outside, although there weren’t many overtly looking.   ~So  I pause as I consider how much she inspired me all of these years and how much she has given me. I’ve always been aware of the strength with which I cope with MS. While I knew somehow that this perseverance came from my mom, it became strikingly clear when she too made this transition. And now I wonder if she felt more comfortable making this decision because I laid the groundwork, so to say. If my 41 year old daughter can use this, then so can I! I’d like to think that I inspire her, in the way she has always inspired me.       I’ll run upstairs and check.. brb!

4 thoughts on “A Genetic Predisposition

  1. Jill says:

    Oh Amy, it moved me so much to read about what it’s like to be the daughter of Vicki!! All the comparisons, the creativity, the type A personality in spades (me too).

    YOU ARE SUCH A GIFT, MY LITTLE COUSIN (funny how I still think of your generation as my littles!)

    Also found out a woman I know has MS – what is the best way to let her know about you and your blog and SoftServe??

    xxx
    j

  2. Darline says:

    Amy,
    I wondered how you were going to top that terrific introductory paragraph, then saw you managed to trump it with outstanding writing in not only the body of your essay, but right down to the concluding paragraph and last 3 sentences.

    How great is it, that at the time you missed your mom’s mothering the most, you found someone who embodied your mom’s essence and spirit, right in your new backyard, so to speak?

    From what I’ve read, you ARE your mother’s daughter, one of the highest compliments I can pay you!

    Thanks for this essay, it has warmed my heart in too many ways to expressed in this comment.

  3. Vicki P. says:

    Aw gee Ame. And to think I got to hear this before my funeral!
    This was beautiful, and I have to admit, it is really wonderful to see yourself through your daughter’s eyes…even though you have greatly exaggerated my talents.

    We clearly belong to a mutual admiration society, You are a far, far better person than I.
    Come up for a cup of tea and we’ll debate!

    🙂

  4. Crystal says:

    Amy,
    What a wonderful (true life) story!! I enjoyed the whole thing very much. It is def. inspiring, especially since I use a quad-cane or walker. Although, I hope that you are not grading me!

    Your fellow Mymsmyway friend,
    Crystal

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