Thursday, October 15, 2009

My MS Story Chapter 13 – Tell me, do I remind you of Fred Astair, even a little?

Fred Astaire
Cover of Fred Astaire

  An excerpt from my journal:

    6/30/04  I got me a cane.  $31.50.

My scooter experiment in Washington, D.C. was a significant milestone, but it was a bit like going on vacation and pretending you're somebody that you're not.  None of those people would ever see me again.  It didn't really count. The real challenge would be unveiling my new cane to the people that I saw every day, or the people that I cared about the most.  This situation wasn't all that different from seventh grade when I had to walk into school one day with- I still shudder to think about it- my new glasses.

The first opportunity to take my cane on a trial run arrived the evening of July 4 when a small group of us attended the fireworks celebration in Portland, Maine.  A huge crowd was expected, so I knew we’d have to park a considerable distance from the optimum viewing area.  I'm not one to compromise when it comes to fireworks. Ever since I was a child I’ve always made it a priority to watch fireworks from the best possible vantage point.  On a related note I also like bonfires and thunderstorms, and I’m certain I’d be mesmerized if I ever saw a volcano erupt.

I garnered enough courage to attend the fireworks celebration using my cane, in full view of thousands of people- local people this time. I only bumped into one acquaintance, Kim's work associate Kate, and it was not awkward at all. I had passed the first test- unveiling the cane in public.  That, however, did not exactly open the floodgates. The cane remained safely tucked away at home for a while longer.  If I remember correctly, it took me several weeks to start wearing the glasses full time in seventh grade too.  In this regard forty-year-old Mitch hadn't matured all that much from thirteen-year-old Mitch.  But since practice makes perfect, today I absolutely kick ass when it comes to unveiling new assistive devices.

In August we had a weeklong reunion in Portland with about twenty close friends from out of town. I carried the cane for the entire week, traipsing about downtown Portland in broad daylight.  This was much bolder than my little jaunt at the fireworks celebration.  One day when we were all strolling down

Commercial Street 
I noticed a piece of trash paper lying on the sidewalk.  In one deft motion I plucked the paper from the ground with the tip of my cane and deposited it a dumpster, without even breaking stride.  My friends were impressed with my new super-powers.

Of all the groups that I would have to face for the first time with my cane, I felt the most trepidation about my coworkers.  Go figure.  Only about half the people at work knew that I had MS at all, even though I hadn't kept it a secret. I’d been disclosing it here and there, when I felt comfortable and when it seemed appropriate. I expected that the number of folks aware of my diagnosis would reach a critical mass, at which point everyone in the company would just magically know about it.  This was what I really wanted.  I was growing weary of all the one-on-one disclosures.  But it turned out that the people in my office had too damn much discretion and professionalism to gossip enough about me; so this critical mass never materialized.

In October an opportunity finally presented itself at work.  Our owner scheduled a weekend retreat for the entire company. There would be teambuilding activities requiring feats of strength and balance, etc. It was cane time.

All 60 or 70 of us took the train from Portland to the University of New Hampshire. I boarded with cane in hand. I'm sure everyone noticed.  How could they not? Some people politely acted like nothing unusual was happening. Some people asked me if I had injured myself.  Others looked at me with a knowing glance.  These were the people who deduced that my MS had progressed to the point where I needed a mobility aid.

I couldn't participate in many of the teambuilding activities, like the ropes course or the scavenger hunt in the woods, so I experienced two “firsts” that weekend.  I started using a mobility aid in the presence of my coworkers for the first time.  I also experienced something that I've faced so many times since- sitting on the sidelines, watching other people enjoy activities that I can't, with a smile on my face so as never to let on that it troubles me.  Despite the fact that I could not fully participate, this two-day company retreat turned out to be a liberating experience. My disability was finally out of the closet. I emerged from that weekend with the cane as my constant companion.

The last hurdle to overcome was revealing this mobility aid to my extended family- my parents and my brothers. They were aware of the seriousness of my diagnosis, and developments like this were not unexpected by them, but it was still a big deal.  Once again opportunity knocked, this time in the form of moose hunting- yes moose hunting. In Maine there is a lottery system for a limited number of moose permits, and after twenty years of trying I finally got one.  Karma?

I used the cane in front of everyone that week, and I shot a big bull Moose.  I was a happy camper.  I had my moose.  I had my mobility aid to make life easier, and I had full disclosure- no more secrets.  My identity was forever changed, and although there was some sadness associated with my disease progression, the principle emotion that I felt was relief.

I got a lot of miles out of that $31.50 purchase.  The cane sits in my garage now, having outlived its usefulness. Barring a medical miracle, I'll never employ it again.  Do I believe in miracles?  Not really...but I can't bring myself to part with that cane just yet.
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  1. I enjoyed your seemingly honest and clearly very well written story. Thanks for sharing.

  2. Your story really drew me in as you described where I'm at -- co-workers and part-time cane. So, what's up with these co-workers and their discretion? The critical mass I'd hoped for in my large department didn't realize last year for brain surgery or this year for MS. The explaining and comments are exhausting yet I know it will be bittersweet once it's clear and known by all.

    Thanks for sharing your story. Oh, cane and bull moose -- nice.

  3. Bittersweet – the acknowledgement of liberation and loss at the same time. Do they cancel each other out? Your perspective – poignant and touching – created an alloy whose tensile strength will hopefully get you through what lies ahead. Thank you for sharing your MS story. Judy

  4. jdemott, my pleasure...

    Bibliotekaren, if I had it to do over again I think I'd just write that blast email explaining to everyone why I walk funny. Screw the critical mass (masses).

    Judy, if I plotted my mobility it would be a graph line slowly deteriorating against time at constant negative slope, until I adopt a new mobility aid, at which time I get a positive step change up. Then the mobility begins to slowly deteriorate again. So its not so much a canceling thing as it is an offsetting thing, I think. The added mobility and the liberation are the intermittent positive spikes that compete with the slow, insidious decline, or something like that.

  5. I, too, work in an office where people are too professional and discreet to have gossiped about me, and I had the same experience. Work was, for some reason, the worst for bringing my cane.

    Thanks for your blog; these posts are such a terrific way of reminding us all that we are not alone.

  6. Mmmmmmmmm, Moose.

    Here's hoping that the second derivative of your mobility remains zero.

    Geek :)

  7. As I read your post, I kept saying "Yeah! Me too!" The first mobility aid -- the cane, or hiking stick in my case -- was hardest. When people asked how I hurt my leg, I'd just say that gettin' old ain't for sissies. I don't know why I found it so hard to talk about MS.

    It's still hard to pretend I'm having fun when I'm watching people do something I can't do. Unless, of course, it's something I don't want to do, in which case it's a great excuse.

    And I still have my favorite cane. My hiking stick was sturdy and functional, but my antique greyhound-head cane is way cooler. I may not be able to use it again, but I'll hang onto it just in case.

  8. Haddayr, I think work reminds us of school, and school reminds us of judgmental little twerps and bullies. Maybe that is why bringing a cane to work is such a big deal in our heads.

    dapulpguy, aren't all moose hunters geeks, or is it all engineers are geeks? I can't remember.

    zoomdoggies, I'm getting much better at enjoying myself on the sidelines, but those first couple of times were difficult. Is keeping our canes a little like keeping our skinny clothes, wishful thinking?