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 different..in 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.

Don’t ever ASSuMe…

So this week Dr. Miller, by way of Jenn Decker (his nurse practitioner) told me that his latest thought is that this dizziness isn’t my MS.

No Way.

That caught me completely off guard, but it is exciting on a number of levels. The fact that it didn’t seem to be affected by the steroid treatment sent my mind in so many directions. Is this ever going to go away? Is this my new normal? I shutter to think.

But if it isn’t my MS, then it can be treated… it isn’t likely that it will be permanent.

But wait a minute….rewind 19 years to Baltimore.

Back in 1989 , my first year with MS, I was in film school living with 4 other girls in a town house off campus. After a few days with a virus I woke up to find my clock spinning. This was followed by a trip to the ER with a waste bucket between my knees. I remember the day vividly. When we got to triage I threw up in their garbage can and proceeded to do so at ever stop I made from there on in. After 17 hours in the ER on an IV, listening to very colorful stories of my neighbors behind the sheets serving as walls, unable to move my head with out losing my cookies- I was given a room. Being sans family in Baltimore left me little desire to go home. No one to take care of me there. My Dad and Linda came from NJ to visit me and my friends from UMBC art dept brought cheer and a mirror so for my three-day stay that I could see people entering the room.

When the doctors determined it wasn’t my MS and gave me a patch behind the ear. I didn’t question it. I used this little circular trans-dermal motion-sickness-aid while in Israel in 1985, in order to tolerate those hairpin turns on the buses. It worked then, as it did in this case.

As MS became less of an enigma to the medical community, I looked back on this experience thinking they didn’t know what they were talking about. Vertigo is now a symptom of MS …of course this bout was MS. To this day I have dealt with a quick turn of the head resulting in nauseas and dizziness…. I just thought it was a part of the me with MS. The part that is inseparable. After almost 20 years of this to have a symptom not actually be MS is mind blowing. I have so many crazy invisible symptoms going on and this fit in perfectly.

So I immediately checked in with my brilliant chiropractor. I hate to even call him that. He never cracks anything. (or I should say very rarely) His knowledge of how the body works, his instinct for areas that need release on a cellular level is beyond words, it’s impossible to describe the work he does. All I know is that Dr. Allan Verter needs to have himself cloned. It’s scary that all of this power to heal exists in only one person.

I’m not the kind of person that rushes to alternative medicine… I’ve been on Copaxone since 1993, and I’m on a number of other medications that clearly work for what the are there for. (that was an awkward sentence!) But the treatment that Dr. Verter provides defies explanation and it is successful. So once I learned that this dizzy head might not be my MS I couldn’t wait to tell him.

And he went to work. And my sense of stability on this planet has improved. And the people rejoiced. (or at least my people rejoiced!)

So now the question is…do I continue to carry this stick? It has served as such an important identifier on my commute. I’m not sure I should give that up.

Tune in next time for this, and a million other topics that will be addressed!