Here’s one thing I’m sure of: my life with MS (even as
undeniably charming and pleasingly photogenic as I am!) is never going
to be made into a TV movie.
I know because I saw one. Remember back when “Disease of the
Week” was the big thing for TV movies? I watched the one in
which a young woman with a wonderful kid and a perfect marriage is
diagnosed with MS. In about 15 minutes, she’s in a wheelchair
and her husband is cheating on her with, of course, her best friend!
And by the end she’s in some institution with slightly less
charm than Lenin’s Tomb, catatonic as a cantaloupe! The only
thing more pitiful than her situation was the script that got her
Hollywood—I don’t do pathetic. And neither do the nearly
6,000 people in Oregon who have been diagnosed with MS. We are productive
people living with a serious disease, taking one day at a time. Most
of us aren’t brave or heroic—most of us are frequently
scared as hell. But we still laugh, still love, still work, still
play—and, because of the people and programs of the MS Center
at Oregon Health Sciences University and the generous donors who support
them, still believe.
Because we are so close to beating this disease—it’s very
important that you understand that. Thanks to an incredible research
effort, we are on the brink. When I was diagnosed, 14 years ago now,
there was nothing to offer me except steroids. Awful stuff—bone
melters, I call them. But today there are new drugs to slow the progression
of MS. Wonderful drugs that are the direct result of money spent on
research. The next big breakthrough (very soon, I hope) will be oral
forms of these drugs—because let me tell you, giving yourself
a shot every day is about as much fun as, well, giving yourself a
shot every day.
The kind of research and care provided by OHSU’s MS Center takes
state-of-the-art labs and big talent, both of which cost—you
know this—big dollars. Dollars that can only come from people
who care, people who want to help. People like you.
Occasionally someone will ask me if it’s difficult or embarrassing
to ask for money for the MS Center—my first answer is that after
14 years with MS, I’m pretty hard to embarrass (I could tell
you stories)! My real answer is that I’ve been a very personal
witness to 14 years of miracles, large and small, resulting from the
work at OHSU, so I’ll happily ask as many times as it takes.
Because we must solve the riddle of this disease that strikes more
and more people each day—by now, you probably know someone with
MS personally—and the only thing that will do it is money.
Money to power the work of an amazing group of OHSU scientists and
clinicians who are attacking every aspect of this very complex autoimmune
disease. At least that’s how they describe MS. I call it “attack
of the bodysnatchers.” Picture this: there are strange people
who have the key to your house and, every so often, you never know
why or when, they come and steal away one of your body parts. Sometimes
they return it later. If they do bring it back, it never works quite
like it used to. And we’re not just talking arms and legs, we’re
talking about the nerves that stimulate your bladder, or move things
through your digestive system—the possibilities for frustration
and misery are endless. And it’s your own immune system that’s
There is no preventive diet or aggressive therapy or miracle cure
(yet)—but there is a secret weapon: Attitude. You just keep
moving forward. When you’re feeling good, you do everything
full blast because you never know when the bodysnachers will be back.
For me, it’s riding my bike. Many’s the week I’ve
ridden literally hundreds of miles—just because I could. And
then they come, and then there’s a bad time and I whine some
and wonder why this happened to me—and then I get sick of that
and I battle back as best I can. That’s my life, and the life
of your sister or friend or co-worker or son who has MS.
Don’t even begin to feel sorry for us—we won’t let
you. Feel inspired, feel motivated to give, feel damn lucky, okay.
But please understand that people with MS are not the disease. MS
is not who I am, it’s what I have. Please understand that there’s
nothing noble about living with this disease. You find the strength
you need because the only other choice is to give up. Please understand
that this is a real race against time—the disease is progressive,
so every dollar that you give to OHSU’s MS Center means maybe
the big breakthrough will come before the next visit of the bodysnachers.
And please understand that every penny you give stays right here in
Oregon, working for the answer to MS.
Finally, please understand how much I appreciate the time you’ve
taken in reading this and in hearing a little of my not-made-for-TV
story. I’m not the kind of person who can move you to tears—but
I hope I’m the kind of person who can move you to give. We’re
so close to beating MS, and you can make a difference right now.
And if Hollywood ever decides that pluck is better box-office than
pity, I’ll get you a part in the movie!
With hope and thanks,