This past August, when the great Jerry Lewis died, I wrote about my admiration for that extraordinary man and his tireless fundraising efforts on behalf of the Muscular Dystrophy Association.
Muscular dystrophy is one of those diseases that rarely make the headlines or the evening news, in part because it is so relatively uncommon. Illnesses such as heart disease, cancer, respiratory disease, stroke, Alzheimer’s… The list of loss and heartache is long, too long, and society very naturally has to perform its own version of triage and allocate resources accordingly.
In addition to relatively small numbers, muscular dystrophy rarely makes the news precisely because advances come so slowly, so agonizingly slowly, and what works for one will almost never work for all, because there are so many variations. Look at an alphabetical listing of the many different kinds of muscular dystrophy; only the letters J, Q, and V are not represented, almost one hundred varieties in all, with sub-categories within each one, usually indicating variations in severity. And there are even more that have no names because they have yet to be properly identified.
My daughter’s variation is Facioscapulohumeral (FSHD), so called because it most frequently affects the muscles of the face (facio), the shoulder area (scapula), and the upper arm (humeral). But that’s not truly accurate. It can and frequently does affect far more; in my sweet Kat’s case it began early on to affect her ability to walk, targeting the muscles of the hip and lower leg especially.
I have a memory from many years ago, while she was still a teenager, of going to meet her at the Los Angeles airport and watching her walk toward me, struggling to make each step, trying to use her will to dominate her legs, fighting so desperately to retain a measure of autonomous mobility. It was not to be.
FSHD has taken much. What it has not taken and cannot take is her ready—and sometimes frightening—intelligence, her sweetness, her indomitable will, her lively interest in the world around her, in people (her friends are many and disparate), books, and living her life as independently and productively as possible. (She edited my book, Dancing with the Dead, admirably correcting my creative spelling, catching dropped words and other errors, and correcting my fanciful attempts at Spanish.) She has a loving partner who matches her in intelligence, and she works steadily.
But now she needs help.
Our medical system is in disarray. It was before Obamacare, which didn’t improve it, and it appears poised to become even less functional now under whatever system may or may not replace it. But it would be both churlish and unfair of me to blame our health-care system for Kat’s current troubles. A corollary of the rareness of anything is cost. Gold costs more than lead, rubies more than garnets. Relatively few people need motorized wheelchairs of the complexity of those needed by muscular dystrophy patients, so while those wheelchairs exist, the cost is exorbitant: think the cost of a brand-new, top-of-the-line, one-ton pickup with all the bells and whistles; think the cost not so long ago of a nice, middle-income house.
She has insurance that covers some of the cost, but there are certain things, features that would make her life much easier and give her more autonomy, and those things insurance will not cover. To that end, Kat has established a GoFundMe account (https://www.gofundme.com/w96dm-help-me-buy-a-new-wheelchair). I understand we all have our troubles, and we all have our own financial burdens these days, but if you can help, you would be helping a remarkable young lady. And that’s my objective opinion, not the proud parent talking. Thank you.