It’s About ALS, and it’s Dead Serious — Except When it’s Not
by Cathy Speck
My dad, Gene Speck, called us earlier today Monday, May 16, 2011. My brother Paul Speck, who had ALS, died today, of respiratory failure.
We don’t know yet what all the plans are for everything — funeral/memorial service — or when we’re going up to Bend, Oregon. That’s where he and his wife Rose, their kids and grandkids are. We’ll be driving up to Oregon sometime. Flying is very, very difficult for me, with all of my oxygen equipment and other fun ALS toys in tow.
Paul was diagnosed several months after I was, but he just started using the breathing assistance last week that I’ve been using for a few months. Respiratory failure is the number one killer for PALS (People with ALS).
This is the very same thing I’ve been struggling with. I’ve been trying to explain to folks, without scaring you, or sounding like “Chicken Little,” that my respiratory struggles — even before the pneumonia — are borderline fatal. Either I die or I don’t, yet I did ride the fence a few times. To quote the honorable Tibetan monk, Sogyal Rinpoche, “You breathe in, you breathe out, you don’t breathe in again. That’s it!”
My brother Paul — an athlete, writer, singer, passionate (opinionated) Sagittarius — is the only person I know who is as determined (stubborn) as I am. I, too, am a Sagittarius, and we are skilled at being diversionary. How ’bout them Kings? Let’s see, let’s talk about the hail storm yesterday in Davis — that was crazy!
Paul’s last several emails were photos and proud comments about his adorable new twin grandsons. And the very last email to our big family was one of congratulations to my oldest sister Barbara about the birth of her second new grandson.
But no matter how much we focus on “new life” or being strong role models, surviving ALS is not a matter of will. Positive thinking is powerful, but it doesn’t work without oxygen.
As you might imagine, even though ALS keeps picking us off one by one, it’s not getting any easier. How terribly sad this is for our 89 year old Dad. How many more children does he have to bury (that sounds better than “burn”) Stephen, Susan, Larry, Paul, not to mention the love of his life, our mom, Dorothy? That’s a rhetorical question — please, don’t try to guess.
On the brighter side, Paul didn’t have to go through the painfully “ugly” part of ALS: the “Glass Coffin.”
This is a bittersweet end of a tale that will never have an “and they lived happily ever after” ending. Then again, maybe it’s just a chapter, and we’re still here reading the “Foreword.”
Most likely, I will be writing the obituary for Paul, since that has been my familiar familial role thus far.
Who will write them after I’m gone? Hmm… I think my niece Erin has that kind of gift, but I won’t ask her about it just yet. Erin is also my goddaughter, and is just finishing her freshman year at UC San Diego. She has so much to living to do…
And on that note (A sharp! Erin is an A+ student), I shall continue sending this death notice to more friends of the family. For you my dear friends, I offer tremendous gratitude.