This isn’t a blog post for newbies. Or for those who
don’t want to be reminded about what multiple sclerosis can do to our bodies. Or
for those who want a typical Dave happy-go-lucky essay that will make you smile
and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on
Facebook the other day, what I am writing needs to be said. Sorry.
Recently a newer MS drug, Zinbryta, was voluntarily
pulled off the market due to serious safety concerns. The response from some in
the MS community was predictable. “Exactly why I don't take any of the MS drugs.”
Another chimed in. “This is the problem with all of these drugs.” And so on,
and so on. One even wrote that her husband got a brain infection (from another
drug, apparently one of the 16 worldwide who tragically suffered that fate),
and proceeded to warn everyone to be VERY SCARED about MS medications.
Life has risks. Jesus, just stepping out your front
door has risks. You could trip over the step, lightning could strike you, a car
could careen into you, and then a power pole could be felled by beavers and crush
you. Or you could narrowly avoid a power pole felled by beavers only to step on
the resulting live wire and get shocked to death while thinking, Whew, lucky
that power pole didn’t hit me—stupid beavers.
Likewise, all drugs have potentially serious side
effects. All drugs. As do vitamins. Yeah, vitamins. As do dietary supplements. Indeed,
the New England Journal of Medicine reports that adverse events from supplements are responsible for an average of about 23,000 emergency department
visits per year.
But “pick your poison” anecdotes about MS drugs and
their potential side effects, no matter how rare or mild, somehow often trump and
subsequently bury all benefits these drugs can deliver to people with MS. And
that’s a big problem. Because the potential side effects from our shared
disease can be devastating. And this is where it gets heavy. I’ve lost friends
to this disease. And I am powerless to help my friends who have enormous
challenges daily, hourly.
Recently, Jacob told me about the last meal he ever
ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or
use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily
caregivers, and a streak of stubborn like my own. Just five years ago we were
laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him
like this, MS did. The same goes for my blogger buds Marc (Wheelchair Kamikaze)
and Nicole (My New Normals), and too many friends I’ve made on ActiveMSers. For
too many people I care about, every day is climbing a mountain. Every. Day.
And sometimes, sadly, those mountains get too steep,
as this deeply personal and touching story, An Instinct for Kindness by Chris Larner on BBC Radio (link expires March 30,
2018) relays about an MSer’s final journey as told by her former husband. It’s
crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping
disability) and her attempted solutions are not uncommon (drugs, diets,
magnets, anything). She finally makes the decision to go to Switzerland,
and I can’t blame her.
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| An Instinct for Kindness on BBC Radio |
Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and
struggles, they might be able to help you. Help you not to underestimate MS.
It’s easy to hold on to the idea that the MS you
have isn’t going to affect you like it affects others. (That might ultimately
be true.) And thinking that way is not just you, and it’s not just people with
MS. That trap is set for anyone with health issues, even Steve Jobs, who many
considered a genius. He thought that same way when he avoided traditional treatment
for his cancer for nearly a year. That’s human. Unfortunately, that’s
also hubris.
There is no question bad shit could still go down even
if you do treat your MS with the drugs that are available. Yes, there is a
chance the drugs themselves could harm you, too—don’t be blind to that. But far
more likely: it’s going to be the disease that wreaks the most havoc. Take that
seriously. And also take seriously that this disease is most treatable in its
early stages, not when it is progressive and rumbling like a runaway train.
