“We must be willing to let go of the life we planned, so as to have the life that is waiting for us.”
- E.M. Forster
I had a system in place to support my occasional scooter use. This consisted of several ramps in my house and a standard minivan with the center row of seats removed.
But by late 2007, due to continued disease progression, I was ready for a promotion from occasional scooter user to frequent scooter user. This necessitated system upgrades in a couple of areas. The first thing we did was purchase a full-fledged wheelchair accessible van, with an automatic door and ramp system- no more manhandling that portable ramp every time I wanted to load or unload the scooter.
Wheelchair accessible vans can be very expensive (a cruel irony because there is a strong negative correlation between level of disability and level of income). A new van starts out at about $45,000. But we found a used one with low mileage for only $18,000. That was a stroke of luck. I won’t be so lucky when I buy my next one.
Another area that needed an upgrade was my workspace at the office. I spoke with my boss, a kind and considerate individual, and we commandeered an underutilized conference room. Just before the company canceling all discretionary spending due to the Great Recession, we renovated the former conference room into an office for me, with plenty of space to maneuver and park the scooter.
January 8, 2008 was significant- my first day at work with the scooter. Most of my coworkers had never seen me in this scooter (although many had seen me in a rented one at Callaway Gardens). I decided to announce my intentions via email to the entire office staff the night before my unveiling. See below:
Just wanted to give everyone fair warning that I’m going to start using my electric scooter when I come into the office. I’m sharing this with you because I like most of you, and think you deserve to know a few things about me and my scooter:
- It goes faster than you walk, and it is quite stealthy. I apologize in advance for anyone whose toes I run over. It has a horn, but I’ve disabled it so I won’t be inclined to honk at people who are slowing me down.
- Although it will be very tempting, please do not call “shotgun” and jump on the back of the scooter for a free ride to the coffee machine or copier. A couple of folks have tried that and yes, the front tire of the scooter can come up off the ground. And if you abscond with my scooter for some sort of a cross-office trek, you do so at your own peril. It’s not as easy to maneuver as you might think.
- Yes, you may still see me use the forearm crutches from time to time, but I must tell you that the thrill of moving faster than everyone else, instead of slower than everyone else, and the ability to actually carry things other than myself, usually results in more scooter use and less crutches use.
- Louie, please do not don a mask, grab a machete, and do donuts with my scooter in the parking lot. It will only scare the children next door….again.
Some explanations are in order. First, I purposely made an effort to keep the email lighthearted and humorous. I wanted to set people at ease. I’m no Jerry Seinfeld, but I’ve found that the judicious use of comedy can be effective in keeping the “aw, poor Mitch” comments, or even similar private thoughts, to a minimum.
Regarding item 3 of the email, I correctly assumed that I would favor the scooter over the crutches, but I didn’t appreciate the extent to which that would be true. After the first day that I brought the scooter to work, I can’t remember ever using the crutches in the office again.
And finally, who was this Louie guy, and why did he like scaring little kids with machetes? Interesting story…
I mentioned in a previous post that this was an office composed primarily of young professionals. As such, we celebrated Halloween with vigor, including an annual costume contest. One Halloween morning when I drove into the office, Louie, our IT guy, was riding a small motorcycle around and around the parking lot, wearing a full rubber mask and brandishing a machete in his hand. It was hilarious. Even though I couldn’t see his face, I knew who it was. This was vintage Louie.
However, the child day-care center across the street from us saw it differently. It turns out that Louie’s goodhearted attempt at celebrating Halloween scared the crap out of the children; at least that's what the cops told us when they stopped over to investigate. Who knows, maybe the kids were actually delighted and only their overprotective parents were afraid? Either way, there was no harm done.
My aforementioned boss worked out of our Ohio corporate headquarters. I had copied him on my little email announcement. He replied by complimenting my humor, but then expressed concern about my health. This was a highly visible milestone in my disease progression, after all. Here was my response to him.
I appreciate your concern.
As long as the symptoms stay in my legs I’ll be good to go. I’m lucky to have a job that suits my ailment well. The office environment with occasional travel is very manageable for me. However, if the MS starts spreading to the rest of my body I’m screwed. There is no way to predict if it will stay south of the belt or migrate up.
We all have great uncertainty about what our futures hold. Any of us can be stricken with a disease, hit by a delivery truck, or killed by terrorists at any moment. The primary cause of my uncertain future is just there for all to see. That’s the only difference.
So Carpe Diem!
Since 2008 the MS has indeed spread to my upper body. Therefore, I must decide to either accept my statement above or reject it. Unfortunately, I believe that I saw things clearly back then. I am, in many ways, screwed.
But, as Forster suggested, I have let go of the life I had planned, so as to have (even embrace) the life that is waiting for me. What other choice do I have?