I have enjoyed watching the improvisation from friends as
they’ve taken the Ice Bucket Challenge, and I’m surprised by how many people’s
lives have been affected by this deadly disease. The funds being raised make
me hopeful that a cure can one day be found.
My good friend’s step-dad, Rudy Steckler, died of ALS. He
was an attorney in Indianapolis, his father, William Elwood Steckler, one of
the youngest federal judges ever appointed in the U.S.
Rudy wore Sally Jessy Raphaels (big red glasses), as we
liked to call them, and spoke in long, drawn-out sentences, a charm caught
somewhere between Cary Grant and W. C. Fields. This probably helped him during
the ALS years, because everything slowed when he got sick, but went undetected
by strangers.
I once took an eight hour canoe trip with the family, and kept as
much of his sage wisdom that I could scribble on napkins and keep in my fanny pack. His ALS began with one
foot dragging behind, and became the most horrific disease I’d ever witnessed.
As every organ in his body began shutting down, he was wheelchair-bound and
spoon-fed, somehow maintaining his dry sense of humor until the end, when he
just stopped breathing.
I always thought it was like getting cerebral palsy late in
life (which never happens), and learning how to jump from “being” to “nothingness.”
My sister, Kate, was born with cerebral palsy. I remember
the looks on my dad’s and stepmom’s faces the day the doctor at Riley held Kate
and said, “This is a cerebral palsy baby.” Just like that, they handed their
daughter to a doctor for help, and she was handed back with cerebral palsy.
ALS is like a palsy, as the body stops working. But it’s
more despicable, in ways, much like MS, because you’re cognizant of all that
you’re losing. With cerebral palsy, you just know that this is the way, your
path, your life. You’re born a lifer
with CP, and many people with cerebral palsy fall into depression.
Though many of us tried looking on the bright side, my dad
said, “I know. We’re blessed. Kate brings such joy to our lives…but she’ll
never be a cheerleader, she’ll never eat a cheeseburger. She’ll never do what
normal kids do." I knew what he was saying. There were many tears.
So with my “nomination” for the Ice Bucket Challenge, I must
decline. I would feel guilty pouring refreshing water over my head, when Katie
can’t lift her arms without complete concentration, can’t eat or drink anything
through her mouth, but is fed via a tube through her stomach. I stick by the people I love.
Sometimes I tell Kate great secrets. I’ve told her about my former boyfriends, what I think about most cheerleaders, and how cheeseburgers aren’t really what they’re cracked up to be. And tomorrow I’ll make a small donation to ALS, in honor of Rudy, and a big donation to March of Dimes, in honor of the hours, days, months and years that Kate has spent idle in a wheelchair, wearing that sweet smile on her face. If you’re looking for a real hero here, come meet my sister.
