When my dear mother was suffering, I wished she could have swapped her ALS for cancer.
I’m sure she wished so too.
She never said as much and hardly ever complained, but those of us around her thought about it. And we knew how she felt.
I
want to be clear that I’m not downplaying cancer in any way. I am
simply putting Amyotrophic Lateral Sclerosis into proper perspective.
Cancer
is a ghastly, horrid demon with the sharpest of teeth and burning
tentacles that grip your throat and threaten to tear you apart. Cancer
may take you slowly, or in a flash. It may drag you for miles over
broken glass and acid. It may cause you unimaginable pain. But it will
let you fight back.
Cancer
may take away just about everything you’ve got, but it probably won’t
completely take away your hope. Not until the very end.
And,
thanks to much-needed funding and research, cancer is a much weaker
demon today than it was even a decade ago when my mother was battling
ALS.
On the other
hand, ALS has so far been an unknown and underfunded disease. This sort
of thing is not exactly party conversation, to be sure. But now, for the
first time maybe ever, there is a large and worldwide audience reading
articles like this one.
This
is why the Ice Bucket Challenge is important. It is raising funds. It
is raising awareness. And it is bringing precious hope to people who
have none at all.
Better the demon you know and understand
My
mother had known cancer and survived it where her brother and sister
hadn’t before. She had witnessed the suffering in the family and
experienced it firsthand too. Those unfortunate events did nothing to
prepare her — or us — for her disease.
ALS
means your muscles stop working because your neurons — the cells that
control voluntary muscle activity — slowly die. Your muscles gradually
become useless, and they waste away from not being used.
The
simplest of tasks become uphill struggles. Then, they become Everests.
Before long, they are impossible. Walking, talking, eating,
breathing — indeed, any kind of motion except for moving your eyes
eventually becomes a superpower you once had and now crave with all your
heart.
At the same
time, your intellect is completely unaffected. Also unaffected is your
ability to feel discomfort and pain. Seconds feel like eternities. You
spend your last years watching and waiting, powerless, contemplating the
full horror of what is and what will soon be.
You have no hope of escape from your chrysalis-like prison.
And then you die.
Sit
on your armchair for an hour without moving at all — not even to
scratch your itchy nose or change the TV channel — and you will have the
very slightest idea of ALS. Spend today in bed, communicating with just
a text-to-speech app, and the extreme frustration and isolation ALS
patients suffer — despite the most valiant efforts of their loved
ones — might then start to sink in. Tomorrow, you will have to use
nothing but your eyes to tell your caregivers what you want them to do
for you.
The worst
thing about ALS, apart from the complete and utter helplessness and
hopelessness — there is no cure and precious little treatment — is the
fact that few people even knew about it until the Ice Bucket Challenge
went viral.
Many doctors are still grossly ill-informed.
Another horror of ALS, apart from the creeping paralysis, is the lack of understanding and compassion that typically go with it.
Ignorance is hell
When
my mother started having trouble walking in 2002, her neurologist made
her walk the line in his clinic like the cops do when they suspect
you’re driving drunk. After she got up from the inevitable fall, he told
her she was feeling depressed because I was moving abroad at the time.
“Go home and take your mind off things,” he said. “Maybe take up knitting.”
In the end, she diagnosed herself online. Cold, heartless pixels foretold her gradual descent into torment and eventual death.
ALS
affects relatively few people and is not profitable for pharmaceutical
companies to research. It doesn’t matter that the disease can strike
anyone without warning and devastates patients and caregivers alike. It
doesn’t matter that you have the same chance of getting it as I or my
mother — hers apparently wasn’t the more-terrifying sort that runs in
families and affects one generation after another.
All
that matters to the medical research industry is the potential for
profit, and so there has been little done to study ALS so far. Even
government funding is next to nothing because of budget cuts.
This is why the ALS Ice Bucket Challenge is not a waste of anything.
What is the price of hope for the hopeless?
The
awareness and hope the Ice Bucket Challenge is bringing are worth every
last drop of water and every joule of electricity used to turn that
water into ice. If you really want to save water, perhaps skip washing
your car. Or flush the toilet less often today. If you want to save
energy, turn off the heating or air conditioning for a bit. There’s your
precious, hope-giving ice bucket.
Let
teenagers have their fun, and celebrities and politicians their five
minutes in the spotlight. That’s fine too. The result means a lot to the
forgotten few.
All
that matters — to anyone who has had the misfortune to brush with
ALS — is more awareness, more funding, more research, and a glimmer of
hope in a desert of torment where there has been almost none of those
things so far.
Hopefully, one day, chrysalises will turn into butterflies.
So pour ice water or scorn as you will. That is your choice to make.
Now, it will be a better-informed one.
https://medium.com/@andrewdegabriele/why-i-wished-my-mother-had-cancer-again-instead-of-als-794d46c1a785
