“I’m not handicapped; I’m crippled”

The Supermodel had another doctor’s appointment yesterday.

Frankly, these visits are probably less enjoyable for me than they are for her.  And all I do is sit in the car and read.

The Supermodel has had problems with her legs since she was about six.  But it wasn’t until two years ago that a doctor finally figured out what was wrong.  Previously she had been diagnosed with everything from multiple sclerosis to Marfan’s syndrome to who knows what, but nothing actually fit her symptoms.  At least now we (and the government) know what to call it: CMT.

Charcot-Marie-Tooth Disease (CMT for short) doesn’t have anything to do with teeth; a British researcher named Tooth was one of the discoverers. Simply put, CMT means that the nerve endings in the Supermodel’s legs and (to a lesser extent) her arms are slowly degenerating.  It’s a progressive disease (it’s always getting worse, never better — which is typical of nerve diseases) and a congenital one, caused by a problem combination of genes.  It’s most common among people of Central European descent — the Supermodel is Prussian and Czech on her father’s side — and affects about 100,000 people in the U.S.  Most importantly, there’s no cure, although a lot of research is being put into it.  (If you’d like to know more, check out the CMT Association’s website.)

In the Supermodel’s case, the CMT has progressed quite a ways, to the point that she can’t really feel her feet anymore.  In the last few years, she’s started getting hand tremors and losing strength in her fingers.  She began taxing muscle relaxants about ten years ago to help her legs, has been using a cane for a few years now, and last year started wearing leg braces.  The latest addition yesterday was wrist braces for when she sleeps, since she can’t totally feel when she overstresses her hands.  Coming up soon: a quad cane, the kind with four rubber feet instead of one.

Even her legendary Supermodel build is tied into the CMT: one of the symptoms of her particular stripe of the disease is a metabolism stuck permanently in high gear.  Literally, she can’t gain weight, which causes all sorts of problems.  She doesn’t have that layer of fat underneath her skin that most people do, so bumps and bruises (more numerous anyway due to the leg problems) take much longer to heal.  She has to bundle up whenever the weather drops below 70 (20 C).  And pregnancy was an adventure — she had to down 800-calorie protein shakes twice a day just to take in enough calories for her and the baby.

All of this is a pain for her (pun unintentional), but she deals with it remarkably well, especially now that she had a clear diagnosis and know’s what’s actually happening.  It’s me that gets worried.  The thought of the love of my life slowly falling to pieces is not one that inspires sweet dreams.  Remember, she’s not even 40 — and already she’s looking at using one of those quad canes like senior citizens do.  (Down the road, it could mean a wheelchair.)  I have to make an effort not to slip into denial, or worse, to start over-protecting her.

If one of my heroes wasn’t Bill Veeck, I’d be a basket case.

Veeck was a baseball executive for 40 years in both the major and minor leagues.  He was the first to create a debenture-and-common-stock syndicate to buy a baseball team, and the first to use special events to promote a team.  He’s best known for signing a midget and sending him up to bat one day (the guy got walked, unsurprisingly), but he also created the “exploding scoreboard” at Chicago’s Comiskey Park, led the Cleveland Indians to their last world championship, and got a lot of important baseball execs started in the business.

More to the point of this post, Veeck lost half of one leg to an injury he sustained while in the Marines in World War II, a broken bone complicated by a series of infections.  He spent the last 40 years of his life with a wooden leg.

Not that it slowed him down much.  Two years after he lost half a leg, he led Cleveland to that World Series title.  Eleven years after that, he got the Chicago White Sox to the Series, too.  Twenty years after that, he was still active as a major league owner and gadfly to stuffed shirts everywhere.  As he put it:

I’m absolutely convinced of one thing.  A cripple cannot coddle himself.  Once you coddle yourself, you’re admitting you can’t do what anybody else can do and then you’re through.  Coddling yourself is a way of apologizing for yourself, and I am darned if I will apologize for anything beyond my control.

Veeck’s use of the word “cripple” instead of “handicapped” is on purpose.  According to Webster (via Veeck), a cripple is “a lame or partly disabled person” — it describes a condition.  But “handicapped” means “to place at a disadvantage” — it describes capability, and Veeck refused to accept any limitation on his capabilities that he didn’t absolutely have to.

For the most part, neither does the Supermodel.  She works full-time teaching special ed students, and loves her job.  She has no problem walking the three blocks to work, or wrestling with our son, or doing the vacuuming (though when her hands started to go, she ceded the dishwashing to me).  She loves the fact that, thanks to her little blue placard, she can have me park almost anywhere she wants.  (Actually, what she wants most is a motor scooter, so she doesn’t have to wait for me to drive her places or worry about bus schedules.  We don’t have the money for a scooter.  Yet.)  Like Veeck, she can do almost anything that doesn’t involve “quick sprints, high jumps and a fast buck-and-wing.”

Some people would fret over not being able to run with their kids — she’s simply glad to have them, since most doctors recommend that people with CMT not have children at all due to the disease’s genetic origins.  (Our pair haven’t shown any symptoms of it so far, God be praised.)  Some people might worry about being accepted at work, but she takes a certain pride in pointing out the advantages to her employer of their obvious compliance with the Americans with Disabilities Act.  Other folks offer her sympathy over the leg braces; she simply shrugs, maybe makes a “Bionic Woman” joke and keeps on going.

You take your heroes where you can find them in this fallen world.  Veeck is one of mine.  So is my wife.  I have the sneaking suspicion that when the time comes for that wheelchair, she’ll start hopping curbs with it like she’s Tony Hawk.

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3 Responses to “I’m not handicapped; I’m crippled”

  1. Amy Hodge says:

    Your wife, Nina, forwarded your blog to our CMTUS group. I enjoyed your take on CMT and almost felt that your words could have easily been my husband’s…your story so closely resembled ours. I am 39 and was diagnosed with CMT1C at 34. My pregnancy triggered my disease. God has blessed me with 2 beautiful children during the same years that this disease reared its ugly head, and for that, I am sooo thankful. I’d rather have my sweet children and CMT than than the other…God is good.

    Anyway…I read some of your stuff to my hubby and his comment was “He’s a great writer”, and he is a passionate reader, so that says a lot. We wish you lots of success with your writing…God has obviously blessed you with a talent, and it is so great that you have identified it and are doing what you love.

    Take care,

    Amy Hodge
    Dallas, Texas

  2. Holli says:

    I’m 45 with CMT, sounds just slightly less advanced than the Supermodel’s (LOVE that name). Unfortunately I didn’t inherit the inability to gain weight! I’ve given up writing with a pen for the most part for typing. My fingers are getting too numb to do that as well as I used to. I did want to tell you that I very much appreciate hearing the distinction between handicapped and crippled. Sometimes we get so PC we don’t remember the meaning of our words anymore. Thanks for that. I too believe in pushing forward and doing everything I can to the best of my abilities for as long as I can. Few people realize the extent of my progression (no feeling in one foot, poor feeling in the other, hand tremors and numbness in the fingers). I was on a ladder hanging a windchime yesterday.

  3. […] a little explanation is in order here.  As I mentioned in a previous post, the Supermodel has CMT, a congenital condition that is causing the nerves in her arms and legs to […]

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