Saturday, September 25, 2010

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!

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Multiple Sclerosis Life of Learning

Multiple Sclerosis Life of Learning