Sunday, January 10, 2010

My MS Story Chapter 27- Ramping Up My Scooter Use

“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.

model_5But 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.

Zoom400blu_lrgAnother 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:
  1. 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.       
  2. 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. 
  3. 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. 
  4. 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. 
Thank you,

Jerry Seinfeld
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?   

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  1. Everything about the disease sucks. There are only two ways to deal with it. Moan and whine or accept it and find a way to smile. You have a great sense of humor and I am sure it helped deflect any uncomfortable feelings that might have occurred on your job. I try to avoid the whine too - it doesn't help anyway.
    I understand the mobility cost issues. We had to get rid of the truck we used to transport my scooter and can't afford a replacement. Our new vehicle isn't big enough to carry the scooter and right now I can't get an outside carrier attachment. So my ventures away from home are very limited anymore.

  2. I don't have any *wise* comments, only an observation based on what I have learned about you from reading your blog -- that you have the will and the intelligence to find a way out of no way. Good luck.

  3. Mitch - nice post! Out of curiosity, how do you select a quote to add to the beginning of your posts?

    I haven't gone back to read all of your posts yet so it's news to me that you've been so recently unemployed. It certainly is an adjustment going from very busy, very relevant to sitting at home without corporate fires to put out or meetings and conference calls to attend!

    I'm certainly glad you got such a good deal on your first van. I'll be looking for one soon enough and I hope to have similar luck. It's an investment with high dividends.

    I also like your mathematical relationship defining the negative correlation between disability and income. Once an engineer always an engineer!

    The use of humor is an excellent tool because it allows others to relax in an uncomfortable situation. The discomfort experienced by co-workers or people met on the street is expected. Just as no-one expects the Spanish Inquisition (Monty Python reference), no-one expects to be met with a disability either upon themselves or others - it's a gut check and millions of questions swirl in their heads, not knowing which to ask, or what comment to make. Humor tends to set people more at ease so I use it often. Another thing humor does is reinforce that even though we are disabled in body (and slightly in mind as the disease progresses) our outlook on life still contains many positive aspects. Carpe Diem - sieze the day - has a poignant meaning for those of us who have a high uncertainty of future health. That's one of the reasons why seeing the world anew through artist's eyes is a high priority since I've had vision troubles in the past and I want to drink all I can while I still enjoy it.

    As always, an interesting read! Thanks for sharing Mitch!

  4. Rae,

    Thanks for commenting. You're right- even if whining feels good (which it doesn't) it generally won't help you.


    Thanks for the good luck wish. I think I need it (that's not whining is it?).


    Thanks. I find the quotes from a variety of spots on the internet. Usually Google "quotes about such and such".

    Yes, I quit working in May of 2009. I'm sort of writing my posts chronologically, so I'll be getting to that story in the not too distant future.

    I've been fortunate enough to suffer no vision problems yet, which is a very common MS symptom.

  5. It was a awe-inspiring post and it has a significant meaning and thanks for sharing the information.Would love to read your next post too......