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.
MS~LOL: Multiple Sclerosis a Life Of Learning 
HI Am – So glad I got to hang with you albeit briefly the other day. What you are going thru – this uncertainty from day to day and even moment to moment, is in some ways, a mirror, albeit a brighter, more distorted one, of the step forward each of us takes each day and each moment. Without minimizing in any way your journey which shocks and amazes me out of my own self-centered lethargy and disgust with my own body changes, it is, the perfect metaphor. Certainly, you never wanted to be a metaphor – who would. But not you, the MS with your body and the way you move forward each day, no matter what because what other option do you have. Ah, my lovely Amy, it is certainly more difficult for you than the majorority of us so-called “normal folks” but we all know that misnomer of normality is a joke. Here is to you for bravely making it public, (Glass raised – of course I am drinking wine while I write this) xx much love
Thank you for posting and allowing us to glimpse how you soar …it is a lift for all of us.
Hi Amy,
Please come by my blog and pick up your award.
Love,
Herrad
The dizziness has been the worst part of MS for me too. I am fortunate because it is not every day but I can tell when my eyes are not focusing well or I get a bit hot that it is coming. I hope that yours goes away… You have my thoughts and sympathies.
amy
have been in your blog. as i read your words i had a warm flush go through me , in other words i was covered with (goose bumps), don’t quite like those words. it is impossible to imagine what you have and are going through…IMPOSSIBLE…..but i leave your emotions, observations, tremors of constant change with these feelings and these words. they are NOT LIGHT or meant for cheap consolation or a pat in the back. they are sword words of feeling the pain in another kind of way and in an amazing sense being in tune with all that you go through. it is a human synchronicity and a language of the soul that resounds and reverberates. and from that and only that place i say that this challenge that has been placed in your life walk is strange and unexplainable….but it seems and feels like you have truly taken it in its real colors and that TRANSFORMATION is in every word that you say…..and isn’t transformation and transcendence the reason for us to be in this life. you may have and are reaching that amazing awareness than maybe any other/s who just waste all golden moments in vacuous nonsense…….i love your tattoo and will make sure to look for it next i see you.
Hi Amy,
Thanks for your mail and visiting my blog, really lovely to hear from you.
Hope you are doing well and the heat has not got to you too much.
Have a good week.
Love,
Herrad
Beautifully written. Your story is quite clear, even among the dizziness.
Thanks Vicki! I really appreciate and respect your opinion. Honored to be serving as a co-“expert” with you a MSCentral.com ~Amy