The Language of Motion ~

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.

I can’t play hopscotch

This week I’ve connected to a dear friend, I haven’t known in two and a half decades. And with this re-connection I find myself addicted to a Penseive-like journey that has revealed immeasurable emotions in addition to an opportunity to become reacquainted with my healthy young self. With remember-whens and photos of me that I’ve never seen, I find myself immersed, unable to look away. This need has taken on addictive qualities that are making it difficult for me to get back to 2009.

In the midst of this journey, I went outside to play with Madeline. With  joy easily found in this early spring day, we combed through the list of things she’d likes to do- those special things that she hasn’t done during the cold winter months. And while her usual outdoor playmate worked diligently inside, we searched for what I can do instead. (tag- no, obstacle course- no, jump-rope competition-no, hula hoop-no.) And though I was able to talk her into drawing on the drive-way with last year’s nubby chalk, it clearly wasn’t on the top of her list.

We held our noses because a skunk sprayed our car last night, and I tried to engage her with a drawing of the culprit, though it came out looking like a turtle. (nubby is an understatement-and you may not have noticed but a skunk has some pretty fine features)

“I know mommy, let’s draw hopscotch and we can play that together!” “Ok” I said, just assuming I could. It’s like a language one never forgets, right? And while she was bending and turning in ways that would evoke dizziness in me, I stood by and serenaded her.

What a day this has been, What a rare mood I’m in…why its almost like being in love

“Mommy, I don’t like love songs, sing something else.”

“Okay,” I said, “how’s this… I’m here, to remind you of the mess you left when you went away.. (an inside joke that only I could appreciate)

“No.” she said blankly in her cute sarcastic way (she is definitely my daughter!)

So I launched into the songs I sang to her as a baby, most notably Madeline Beatrice Adams-Gurowitz sung to the tune of John Jacob Jingle Heimer Schmidt. And we laughed as she finished the hop-scotch board.

With the joy that is reserved for single children, she went first, and second, and third. ☺ Then it was my turn. I grabbed the stone with optimistic confidence and started on a task that was at one time as natural as breathing. And though it was clear with my first hop,  I pushed on. As I jumped, I edited the film in my mind, cutting between my yearly neurological exam and each hop. A visualization that is so strong, I will remember it as if the scene played out in exactly that way.

When I was done, I sat with the realization that this simple little game is exactly what I can’t do. So I watched her for the rest of the time… counting and clapping. And while I’m sure she enjoyed the attention just the same, I withdrew to that faraway place that has consumed my last 9 days and that picture…. lying on my side, with head in hand and the classic smile that lives with me today. It’s no wonder that I’m stuck in those early years with my dearest friend from a healthier time; a me that feels simultaneously so far away and so close. I don’t want to come back. Yet I know that if I don’t find a way to absorb this feeling and make it my own, in my current day… I won’t be able to laugh with Madeline on the driveway singing songs that are mine (Alanis) and her’s (…her name is mine name too).
ag

MS Aware… ness

This past week  was MS Awareness week. It’s this week that all of the organizations dedicated to eliminating the disease and supporting the people who are living with it turn up the volume so the rest of the world can hear.   It’s got me thinking about the word- Aware.

I recently received an email from someone who was introducing themselves as so many do – with her diagnostic tale. She described her version of MS in reference to how it has progressed to a point that she is aware of it everyday. I immediately paused to consider.  It’s an interesting way to establish one’s level of disease impact.  So I try it on.

I was diagnosed at 20 years old with my identity still in its pupa stage. As a result MS is an integral part of me. The inseparable fiber of who I am. No matter what my symptoms are on a given day, if I’m breathing I am aware that I have MS. Of course my symptoms make it next to impossible to forget, but it’s much more than that.

It may be because part of my forming sense of self as a young woman was with the  knowledge that my future would require an ability to cope.  And because there was no way to determine what I’d be coping with, in both the immediate and distant future, I needed to learn to live with the not knowing. I think that was the most difficult aspect to wrap my head around.

In the beginning it showed itself mainly as fear. And not in the productive way that forces you to strategize and plan; but in an insidious way that derails everything. The kind of fear that takes every moment your mind is at rest and fills it with all the worse possibilities in scary detail, often with a dramatic score. (I was in film school after all- theatrics at the ready!)

But as the years went by this fear turned into something else. It had cadence and rhythm. What was imperceptible while in the midst of it,  is crystal clear in retrospect. And while I’ve struggled to come up with words that effectively describe it,  I  immediately recognize it in others who have been living with these two letters for a long period of time.

It’s a verve that underscores our coping. A long history that informs and ultimately empowers our uncertain future. Maybe I would have been that person no matter what my life map looked like.  Either way, I enjoy the resilience that I’ve earned. And relish in its constant application to what MS and life in general throws my way.

And the other foot-drops…

On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.

For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited.  So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system.  I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art.  Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.

And so it went unchecked until December of 2007 when the dizziness  arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.

This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick.  Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)

So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,

“What are you using a cane for?”

“To compensate for my foot drop” I say.

“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said

“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.

So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”

I know, I know. Dr.s treat diseases and  symptoms while nurses treat  people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees?  And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.

Hmmmh. I miss Linda Morgante more than ever.

I’VE HAD IT!

Okay.. I’m the queen of optimism here… Anyone who knows me- knows this fact. Since reports came back from my kindergarten teacher in 1973 it was on record. “Smiles, endless smiles. Amy is so happy, she’s a joy to have in class” Now granted.. this was news to my mom being that my home life was different. Ever since my sister came on the scene my role changed. Only 20 months younger than me, she catapulted me from center stage, and I hadn’t even sung my big number yet. So, my shining persona was not evident in the daily family experience. Imagine that.

Years later that sunny disposition and overall optimism “in-spite-of-it-all” has carried me through so many of life’s dire moments. And its that attitude that keeps me going no matter how hard MS pushes me back.

But I’VE HAD IT!!! (as previously stated!)

Of the myriad of symptoms I invisibly juggle everyday… Foot Drop has been an unwelcome repeat offender. To clarify..  Foot Drop is when your foot does not listen to the message to pick itself up~ so, at the all important moment, say when one is taking a step, the toe portion drops down… igniting a trip-stumble-fall scenario that is very unpredictable and usually humiliating.

Walking through the NYC streets and stumbling on nothing does not do much for your cool, unfazed city image. But since I was labeled a “klutz” long before diagnosis… it was not an unfamiliar feeling. I can only imagine how this disease impacts people who were dancers or athletes. For me, however, it was a couple of notches lower on the less than 0 scale of coordination.

And yes.. I’ve got many amusing/pathetic stories of kissing asphalt in NYC. This was one of my incentives for using a stabilizing stick on my commute. It has saved me from many falls since I added it to my routine. When I get to work (at NYU Film school) I walk the halls sans stick. Not because I’m working on a particular image amongst the students… it’s great to be an adult who is beyond caring about those things… but more because I’m comfortable in that space… and have things to carry- rendering the stick inconvenient.

So.. we are finally narrowing in on the story leading up to this interjection!

It was almost time to leave. A student asked me a question that I did not know the answer to… so I threw caution to the wind and walked 10 feet to someone I was sure knew the answer. On my return trip (as it were),  approaching the staircase that was situated between the start and end point- I did just that. I tripped dramatically. I was as horizontal as one can be without flying (or sleeping) until I righted myself. I was furious!!! The spectacle of the matter didn’t help. There were many around observing me trip over a phantom item.. and as I pulled myself back up I was standing next to a faculty member who was leaving the staircase and made a light-hearted joke. This would normally have been how I would have handled this exhibition, but this time I was pissed! Dammit! I can’t even walk a circle of 20 feet without displaying my brain defect! And for some reason I wouldn’t laugh it off. I was furious. So, I uncontrollably stated: “You know I have MS right!? This happened because of an MS symptom! I have foot drop! So I trip over nothing!” Poor guy. Talk about being caught in crossfire. It was me and my MS and we were yelling it out for everyone to see… and hear. This particular faculty member is a sweet guy… we’ve always had such a lovely “hello-goodbye-have-a-nice-day” sort of relationship. And now, he found himself in the midst of my tirade of frustration and anger and he remained sweet.

So I left for the day with my stick supporting me through the commute home as I grumbled to myself about how I can’t even walk 10 feet without tripping. I was angry and feeling sorry for myself.

I was diagnosed with MS when I was 20. I never had a period of my life where I felt in control of things. Just as I was leaving my tumultuous teens and embarking on a life of my own… taking over the role of “boss of me” from my parents, I had a new boss. One that appeared unexpectedly and told me I couldn’t do the things everyone else was doing. One that has a job plan for me, but refused to allow me to be prepared for it. And once I got used to my new job requirements they changed. Everything becomes more challenging and my ability to meet the requirements are much harder. But in the end… I always matched them.

Days later it feels like a distant happening. Another story to tuck in to my over-flowing-suitcase under my bed. I’m not sure if being pissed really served me. I think I prefer to be strong and humorous. I suppose that makes this ride more tolerable.

And so it evolves.