Saturday, September 25, 2010

Question of the Week: Inspired Time

Living within the limitations that MS hands me, I have learned some amazing things that I CAN do.  I credit this understanding to the extra time spent thinking that would have otherwise been filled with endless high-energy activities. (Nice spin, dontcha think?) This sweet rationalization includes both my writing and my non-profit, MSSoftServe.

I had never known that I had (have) a talent for writing, nor had I the confidence to pursue anything.  Both turned out to be true.  My blog is both a conversation starter and a catharsis. I write my essays and I have found quite the release by putting my emotions out there on the www. The positive feedback makes it hard to ignore; it apparently isn’t only me getting something out of it, and that furthers my warm-fuzzy-factor.

The non-profit has become my life mission. I’ve developed a non-profit that provides a new, customized way to learn about MS while you’re living with it. It grew out of my master’s thesis (I never thought I could get a master’s degree!), and from day one I’ve never considered NOT doing it. MS SoftServe has a Board of Directors, a strategic planner and grant applications in its not too-distant-future. And all I can say is Who Knew?

So tell me, what have those two letters taught you about your capability?

I'm thinking.

Now you're wondering what I'm thinking; that's how it works when you make open-ended statements like that one.

I've been thinking about how my life with MS has changed radically in the 22 years I've been in the club. But I'm not thinking of the obvious ways; those being the symptom accumulation, the increased medications, evidence of the strength of character that comes with enduring challenges and still finding humor to make it through. (Did you know there are visible muscles associated with that!?)

I'm thinking about how for 18 of my 22 years my MS, I was invisible to the passer by. There was something comforting, yet distressing about that. It was hard for me to have so much going on behind the scenes (things that required major emotional fortitude) and being in a group of people who had no idea what I was tolerating. I'm an "everything out there" kind of person and it comforts me to be understood. Yet it also allowed me to sit in cozy denial of what was really happening; that being my increasing loss of abilities.

In 2007 I started having balance and dizziness issues. Adding that to my already present foot-drop, I was being served one toxic cocktail. And so, I was forced out of the closet.

When I started using a walking-stick, everyone knew I was dealing with something. And while on many levels it throws a wrench in my efforts at denial, it does have a few things going for it.  Pray tell Amy, what things?, you conveniently ask. First off, it gave me an opportunity to educate a lot of people about MS. (Hey Amy what's your deal?) and secondly I no longer had to explain myself to strangers on the streets of NYC when I got-all-horizontal.  (Dude, what is your problem?)

So tell me about your experience with visible/invisible MS; unless of course you aren't an "everything out there" kind of person. In that case, read, think, move on. But better yet, throw caution to the wind and tell us all about it. Your choice, no pressure!

Tuesday, September 21, 2010

Question of the Week: Self-Image

Big Wheels Keep on Turning, Proud Amy Keeps on Burning (rubber!)Two weeks ago I, along with my family of three, went on a vacation to Seattle. We'd never been there and had heard that the coffee is spectacular. Wink It had been many years since our last vacation, back when we were a family of two, and I knew this would be very different.

My ability palette has a few less tools than it did 10 years ago when I climbed Masada in Israel. On this trip I had a motor and a comfy seat held in the front of the plane, waiting patiently for me.

Although I got my scooter over a year ago, I've had to force myself to use it planning trips to museums, sculpture parks, and zoos. Things that I want do, but can't without wheels. This reality is so hard to accept; scooting makes it obvious to everyone that sees me.

I am very aware of how people treat me with more concern, getting out of my way as I move through a crowd, (This may be standard behavior in Seattle even without a scooter, but New Yorkers need a clear signal to not to plow you down on the street with eyes rolling.) I can't help but to feel that this image isn't me.

I know all that this vehicle affords me. (Can you call it a vehicle?) I know that I can participate in ways I never could without it. But somehow I'm uncomfortable with how it feels to be hip-high in a crowd, eliciting question marked faces and sympathy from everyone I "run" in to.

What is your experience with your MS image?

MSLOL- Multiple Sclerosis Life of Learning

Don’t you hate it when you have something to say, it’s right on the tips of your fingers, yet it remains elusive? Elusive is such a great word,  don’t ya think? But it isn’t the one I’m looking for!
Please check out my post on MS Health Central that goes in to stunning detail about all of the words I can’t find and as a result tells you all about MS SoftServe.  
Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge.

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Multiple Sclerosis Life of Learning

Multiple Sclerosis Life of Learning