Vestibular- and other highlights of my growing vocabulary

Far be it for me to explore the uncharted grounds that google exposes one to (see MS SoftServe) but in this case I wanted to get more info about this vestibular test so that I can be more specific in this entry. It’s always interesting to read the variations of phrases that describe what MS is… of course how it reads depends on the specific slant…the angle. The one that turned up in this search contains some jewels.

Multiple sclerosis

Multiple sclerosis is a disorder of recurrent, inflammatory CNS demyelination due to underlying autoimmune disorder. The onset is usually at 20-40 years of age. Episodes begin over hours to a few days and last weeks to months. Typical symptoms include optic neuritis, ocular motor dysfunction, trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia, and bladder dysfunction. Vertigo, at times mimicking vestibular neuronitis, is a presenting symptom in less than 10% of patients. Dizziness or vertigo occurs at some point in the course in a third of patients. Few patients present with hearing loss due to brainstem involvement.

(I enjoy reading more scientific descriptions of the disease. I’m not sure if it is the high-level vocabulary or the lack of drama. I like that “trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia” Those are great words )

So I went for the test that would determine if my balance and dizziness issues are my MS, or not. (once and for all?) I was warned that it was likely to leave me dizzy and nauseas- so I made sure to bring my mom along to provide an escort home through NYC commuter subway traffic. We had no idea what to expect, and could never have dreamed up the elaborate reality of what this exam actually was. (Although a couple hours watching the sci-fi network may have helped! And so my film references begin… starting with Altered States.)

We were called in after the normal pre appointment- paper-work, sit-and -stare-at-your-feet-experience of the waiting room. After being lead through the maze that is Mt. Sinai, we were brought to a room that was large and had high ceilings. There was a simple looking examination table with an unusual cloaked apparatus above it. But that wasn’t where your eyes were drawn. (so to say) Instead they are immediately focussed on the cylindrical structure behind it. (Reminiscent of the orgasmatron of Woody Allen’s futuristic Sleeper) It was all white with a black chair that was hooked up to a mechanism that would allow it to spin. And to top it off was what appeared to be head gear.

Looks like we are starting with this most intriguing unit. I sat in the seat, with head-gear on that held a reflective glass in front of my right eye-a digital link requiring no light to transmit. (City of Lost Children comes to mind) In complete darkness, with the chair spinning slowly, I watched the red dot, flashing lights and total blackness. Sitting in the dark I was reminded of the book I recently finished (that my mom was currently reading) The Wind Up Bird Chronicle, by Haruku Murakami- in which the main character spent a period of time in a well- experiencing the darkness and other transcendental experiences for which Murkami is an expert descriptor. After a period of time with sensory deprivation, spinning slowly, look-at-red-dot, flashing-white-bars, don’t-close-your-eyes, how- can-you -see-what-I’m-doing-in- this-pitch-lackness, this stage of the test was complete. I exited the cylinder with a dizzy sense – trying to regain my earthly presence.

Next stop…tilted table with head up, darkness cloak, shoot-warm-air-in-to the-inner-ear-follow-the- red-dot-so that you feel nauseas and dizzy test. Then the other ear. Then the same with cold air. Then the other ear.

Then one more test in the cylinder. I’m not sure after all of this that it is reasonable for anyone to have vestibular stability.

So… it was determined that I am dizzy and nauseas and need a coke to soothe my stomach. Oh, and that all my responses are completely normal and that it is probably due to my MS. Thanks to Mom for being there to bear witness and steer me to that coke. I back to square one again?

Beep..boop…beep. “Dr Verter… can you squeeze me in tomorrow?”

Sticking to it.

My dizziness has seriously improved. Dr. Verter comes through yet again. So, I have a much better position on the earth… not completely stable…but one that is far more secure than I began 2008 with. I’m not sure how soon after I left his office that things really kicked in for me. It’s a subtle and gradual process that has left me feeling completely inexplicable ways.

So I began to reconsider my trusty stick. Do I still need it? My balance is by no means perfect, but that has always been the case. So I did some tests without it. Rode the subways…slowly walked up the stairs sans stick, and I realized what I think I already knew. The stick is an important announcement and a reminder. For the prior…the world at large is the audience and for the latter the target is me.

It has been a significant help to make my invisible condition..disease…identity (what is the right word here?) present…apparent… evident. People rise to the occasion in ways that I didn’t expect. Be it a subway seat or holding an elevator… In many ways it let’s the societal cream rise to the proverbial top. There is a lot of good out there and if people are given the opportunity, they crack open the solitude of commuter stance to reveal the person behind the mask. I hadn’t realized how much power there is there. It makes me feel good about the people I’m sharing the planet with.

Then of course there is a certain level of empowerment in taking charge. I thought that by using this walking assistant I was admitting defeat. Not consciously of course, but on a deep emotional level. As if I was making a statement to the world that MS has me in some way. What happened was really quite the opposite. The stick has given me power. The power to bring out the best…and the confidence that I can walk farther and faster without kissing the sidewalk.

There is also the reminder I aforementioned. It reminds me that I’m not the same. That I do need to take special considerations. That I need to slow things down and be more concerted in my efforts. And although I only use the stick commuting in and out of my building at NYU it has encouraged many conversations with people about Multiple Sclerosis. People who I’ve worked with for almost 5 years that had no way of knowing.

A common response for so many people is “Oh, you must have a mild case that doesn’t affect you then”. To which I explain, My symptoms are every day, all the time- it’s just that they are invisible. Sometimes I say more, sometimes less…but everytime I feel as though I’m educating one more person about the many faces of this disease. Adding to the list of people they know with MS, hopefully making it easier for the next person they come in contact with.

This walking stick is as so many things. I’m not sure I’ll ever give it up. I think I’m starting to love it.