Friday, October 9, 2009

My MS Story Chapter 12 – A journey of a thousand miles begins with a single...scooter ride?

For those of us with Primary Progressive Multiple Sclerosis there are several major milestones that must be reached.  Some occur early, like diagnosis, various disclosures, and fooling yourself into thinking that one or more of the Relapsing Remitting MS drugs will help (that is almost a right of passage for PPMSers). For many of us, the next big milestone occurs when we become visibly disabled.  

In Maine, the school kids always get a weeklong vacation in April. We call it "April Vacation,” because it is a vacation that falls in April. If I’m moving too fast for any of you in this post, I encourage you to go back and re-read certain paragraphs before you continue.

My wife and I decided that in April of 2004 we would take the kids and spend a few days in Washington, D.C. None of us had ever done the tourist thing in D.C., so we were all very excited for the trip.

Washington, D.C. is considered a great walking city.  You can park your car in any spot near the National Mall, and spend several days taking in the sights without ever bothering with the car again- various Smithsonian museums, the White House, the Capitol, the Lincoln Memorial, etc. Of course if you're not a good walker, then that's a problem.
English: South façade of the White House, the ...
 (Photo credit: Wikipedia)

At this point in my disease progression I was having a lot of difficulty with longer walks. I was avoiding going to sporting events, shopping malls, or big-box stores. Nature hikes were out of the question.  My legs would get tired after only a couple hundred yards, feeling as wobbly as a healthy person’s legs would feel after having run to the point of complete exhaustion, and then a little further.  I knew that eventually I would have to employ some sort of mobility aid, but that is an extremely difficult step to take (pun intended), and I was putting it off as long as I could.

I decided that this mini vacation (during April Vacation) would be a great opportunity for me to try out a mobility aid in a non-threatening environment.  Nobody that I knew, other than my immediate family, would see me. I searched on the internet and found a company in D.C. that rented scooters.  I'm not talking about the cool, two-wheeled type of scooter that is almost like a small motorcycle.  I'm referring to the type of scooter that George Costanza used in that classic Seinfeld episode.

Lincoln Memorial
(Photo credit: Wikipedia)
We spent two days in DC- one day in the mall area and one day at the municipal zoo. I used my rented scooter in both venues, learning a few things in the process.  First, I learned about curb cuts. You need to constantly search for these sidewalk transitions because it turns out that scooters don't go up over curbs very well at all.  I did confirm, however, that if you don't mind a major jolt to your system they will indeed go down over curbs. I also learned about stairs. It turns out if there are stairs between you and your destination the scooter can't climb them. You need to scour the building for a handicapped ramp or elevator. Sometimes the ramp or elevator is in an obvious and convenient location, but many times it can be an adventure to locate one.  These are issues that only a disabled person or an architect would ever care about.  Sometimes I wish more architects were disabled (or the kinder version...I wish more disabled people would become architects).

It’s not all bad.  I learned how being in a scooter can help with the long lines that form outside tourist attractions.  It turns out that you, and everyone that is with you, can often skip right by the hoards of parents and their snotty nosed kids- no waiting required. Best of all, everyone that you zip by in your scooter smiles at you politely, without a single complaint to the authority figures about how you just cut in line.  I suppose that this, as with handicapped parking placards, is one of the ways that society attempts to equalize the fates of its members- redistribution of happiness.
Perhaps most importantly I learned that if you are not stubborn, and you accept the benefits that come with a mobility aid, you can resume activities that had been avoided for a long time. Some folks in D.C. looked at me with pity for the fact that I needed assistance at all- the glass half empty viewpoint.  But from my perspective, as someone discovering the freedom that a mobility aid provided, the glass was definitely half full- at least half full.
Overall, I’d characterize my first scooter experience as a success. It would have been impossible for me to enjoy Washington, D.C. without it. However, I wasn't really coming out of the closet yet. This was a private rather than a public experiment. It gave me a chance to try out this technology in relative anonymity, dipping my toes in the water of the disabled world. Later in 2004 I would start using mobility aids at home, at work, and in my community. That was a much bigger deal.
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  1. Did I write this?

    Well, it wasn't Washington DC. It was Victoria, BC. Similarly a great walking city, if you can walk. I rented a scooter for the first time, and was amazed at how much more you can see when you're not spending all your time and energy just trying to get around.

    It was almost enough to outweigh the flock of little old ladies zipping around with their "Scooter squad" flags. But hey, you do what you gotta do.

  2. I remember how uncomfortable I was when it became clear to me that a scooter would be necessary in order to get around better. My discomfort didn't last long though and now, I actually look forward to getting around in my scooter. It sure beats the crushing fatigue experienced after only a few feet of walking. Often, while I'm zipping around in my scooter (not quite as zippy as the WC Kamikaze), I see people so pitifully unsteady in their walking who clearly could benefit from the use of a scooter. But looking "disabled", being a very powerful element in our psyche, prevents some from doing that which could be highly beneficial and therapeutic, both emotionally and physically. Sometimes I notice people looking at me in my scooter wishing they were in one too. I'm glad I overcame that hurdle.

    The Seinfeld clip was funny.

  3. Zoomdoggies, I must have somehow channeled you as I was writing this piece. Parallel universe maybe? If you are smart, you do do what you gotta do, don't you?

    Centenniel, I also see these people who would benefit from a scooter, but refuse it. Most of them are old folks. They can be stubborn lot. It's understandable though.

  4. Hi Mitch,
    I remember my first time in a wheelchair, too heavy for me to roll independently, so Richie pushed me.
    It was a white knuckle ride for me, it seemed faster than it was.
    Sadly by the time I got my scooter it was just too late as I could not get off and walk anywhere.
    These days I have a power chair too, will get the adaptation next week when I can finally get out of bed after 14 months and learn to sit again.
    Have a good weekend.

  5. Herrad,

    I've spent only a few minutes in a manual chair my whole life. I went pretty much from crutches to scooter to power chair. I have a manual, but can't push it very well. It's for emergency only.

    I'm glad you'll be getting out of bed soon. Good luck!