Living on Earth, With Mirth, Even With ALS
by Cathy Speck
I’m baffled, befuddled and operating with a teeny part of my brain. The rest of my brain is busy reminding me to breathe, hydrate, don’t lie down flat, and take my meds on schedule. I’m thrilled and honored to have the opportunity to use my literary skills. I get to die doing some of my favorite things.
Sounds like a song. How ironic.
My biggest concern I had after being diagnosed with ALS was losing the ability to talk, sing and perform. Well, that time is here, and I’m not dead yet. I can still speak, but go hoarse quickly. I might be able to eek out a song at a wedding or funeral, or castrating ceremony.
I’d love to write something monthly, if I can keep up with the deadlines. We’ll take it one day a time. I could write about many facets of ALS, but these will be points of departure. From there, it’ll flow into dying death after death after life. Living on earth/living with mirth.
Every column will be fun, funny and honest, bare, vulnerable and insightful. It’ll be rated “G” or “PG.”
“Hey, Cathy Speck, what will you call the column? Macaroni?”
How about: Speck Speaks — For Awhile.
Ham I am, and in German, my last name, “Speck,” means bacon/ham. Did I just hear you yodeling, “old lady old lady heeee whoo, yoohoo old lady oh oh uuu lady I diddle jey de hoeo?” Which roughly translates to: “arrrrghhhh grrrrruffff,” or, “From Speck’s Vista Point Spot.” Or “Checking in With Chatty Cathy.”
I’m typo-ing (as opposed to typing) two, maybe three fingers at a time, as I occasionally look out our patio door. Thee daffodils smile back, and the gigantic fern begs me to come out to play. (I would if I could, but we should have scheduled a “play date.”) We have a small patio — yes, a cute, north-facing patio small enough to be a large town populated by the many transient gnomes who’ve sought refuge here.
Which has nothing to do whatsoever with my intended message. What I wanted to type is this: ALS — amyotrophic lateral sclerosis aka Lou Gehrig’s Disease — is not a popular disease. There is no cure, and no cause has been confirmed. The biggest breakthrough in research was the identification of a rare genetic mutation (SOD1), which is known to cause some familial ALS.
This SOD1-type of ALS has been documented in only two percent of all ALS cases, but that small population is perfect for researchers to work with since they can follow…
Oh, bother, I’m not a scientist. I wasn’t even one of those kids who played with chemistry kits. I preferred playing outdoor team sports, or being a show-off and hollering, “Hey Mom! MOM! Watch me!” as I was climbing the towering mulberry tree and jumping — while keeping my eagle eye on lookout duty for dog doodie.
…The most common form of ALS, called Sporadic ALS, is estimated to be 90-95 percent of the ALS demographics. With large SOD1 families (like mine), researchers have a better chance at following the cells, nerves and proteins to gain more information about “what, when, why, how” the mutations are activated. This was huge breakthrough, but that was in 1993. As you can guess, we need so much more money to keep the research going strong.
Please join me in striving to bring ALS awareness to the forefront. Join hands and vocalize our needs so that the voice of ALS is not silenced by the calls from so many of the more “popular” diseases: Parkinson’s, diabetes, prostate cancer, heart disease, breast cancer, leukemia, AIDS.
Please spread the news, sound your trumpets, bong your bongos, wet your whistles any way you’re able and tell your congregation/friends/family/co-workers/dog park acquaintances to take a look at our regional office website: www.alssac.org
Thank you berry much. That’s a phrase our mom used when she was teaching us how to be polite. But she didn’t say “berry.” Now she’s buried in the Davis Cemetery. Gallows humor fuels me.
About the ALS Association
The mission of The ALS Association Greater Sacramento Chapter is to lead the fight to treat and cure ALS through global cutting edge research and nationwide advocacy while also empowering people with Lou Gehrigs Disease and their families to live fuller lives by providing the with compassionate care and support.
For more information on Lou Gehrig’s Disease visit www.alssac.org; 2717 Cottage Way, Suite 17, Sacramento, CA 95825; (916) 979-9265, (916) 284-8299; fax (916) 979-9271.