Stick Semantics

Until January of 2008 no one could tell there was anything wrong with me. Every day I left my purple house and crossed Park Street to stand on the Watchung Avenue platform and take the Midtown Direct to NYC. At Penn Station I walked up the stairs and then a few blocks, then down the stairs and up the stairs and down the stairs, and up the stairs and one block to my office. And while this was a challenge, it was something I was proud to be able to do. I have had Multiple Sclerosis since my 20th birthday. Walking and stair climbing has always been an effort for me. MS has robbed me of balance, coordination and stamina. Yet in spite of this no one would have noticed that I was different from any of the hundreds of commuters that move as one.

When dizziness was added to my MS symptom buffet, everything changed. With an increased unsteadiness even the most basic things were not a given and the commute was more like an outward-bound adventure. But I loved it; being part of this mass of silent people moving in unison toward their destination. I knew if I wanted to continue I would need something to ground me. But what were my options? A cane? A cane means old, disabled, infirmed. I’m young. A cane just doesn’t fit.

So I didn’t get a cane, I got a walking stick. Don’t get me wrong – it’s a cane, but I call it a walking stick.  So I got it home and tried it out, and the internal debate began. Could I make this part of who I am?

I was just about to turn 40 and though I had been living with a different-ability for two decades, I didn’t announce it to every one I passed. A cane, excuse me, a walking stick would do that. So I pushed myself like a kindergartener on the first day of school. Forcing myself to be outed, to show the world who I really am.

What I didn’t know at that time was how empowering this decision would be. I thought that by using this walking assistant I was admitting defeat. As if I was making a statement to the world that MS has me in some way. But what happened was really quite the opposite. The stick has given me power. With this visual recognition I brought out the best in the people around me, who treated me with concern. They recognized I had more to contend with than the average commuter. And with that, I learned how to walk proudly while carrying my big stick.

~This short essay ran in the Montclair Times during MS awareness month.. that being now!

Minor/Major Musings

It’s been a while since my last post. Losing my best friend Linda has put me in a different space. I’ve been writing for Health Central’s MS site and that has distracted me from the more intimate posts that rest here… taking me away from my innermost thoughts. But I had a dream and I want to share how it felt.

March 1st
I woke up this morning knowing I had a dream about Linda. Not because I remembered any details, more the feeling that I had to be reminded she is gone. Like for a second I could hop up and call her to say it had been too long since our last conversation.
And interestingly, I found a new and different kind of sadness as I fell into the day. One that can be concurrent with feeling happy and positive. It’s a glimpse of how it will be… because while I know I’m nowhere near that place… and some days will be harder than others… I have sight of what it will feel like when some days become most days.

If you are interested in my Health Central postings,  follow this link. This is the first in a column about living with MS and parenting. It’s called MS aParent.