Skip to main content

Ground Control to Major Tom...

The classic David Bowie rock ballad is running through my head as I sit in my power wheelchair with my v-pap strapped to my face. I mean, how space age is this?! And I'm communicating with human beings all over the planet from my Tobii.

When I was a kid, the Viet Nam war was regularly on the news.  The Bay of Pigs was a reality. There was no such thing as a reality shows. Astronauts walked on the moon and we watched it on TV. We stood up at the beginning of class and put our right hand over our heart and pledged allegiance to the flag and the United States of America.

I watched The Nightly News with Walter Cronkite, Dragnet, Lawrence Welk,  Hee Haw, and Laugh In with my grandfather. I watched Sesame Street, Mister Roger's Neighborhood, the Brady Bunch, Partridge Family, Wild Kingdom, Disney, and lots of cartoons. With my mom, I watched Dark Shadows, Peyton Place, Days of our Lives, Twilight Zone, and movies, especially scary ones.

You know what's scary? All the things we used to be scared of are no longer scary. Like the Vietnamese, Russians, and African Americans. Mystery lifted, fear dispelled. Aliens, okay fear of aliens is box office magic, but we feel pretty safe from life "out there". War, yes war is a worry, but  it's different these days. We hate the toll taken of soldier's lives, but some are oblivious or focused on the economics of war..Otherwise, war feels more like a nasty Xbox or PSP game these days, and it's not.

It seems as if the biggest fear now is threats to our health and well being. Ebola, enterovirus 64, e-coli, flu.... Where's ALS in this mix? Ground control to Major Tom... We are dying out here...A slow /fast  death, depending upon your point of view...No known cause...No known cure...Certain death... Cruel twist of fate, paralyzing the healthy and active.

Major Tom, can you help?

Comments

Popular posts from this blog

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

Immersion Therapy

Please excuse my selfish absence from posting to my blog. I wish I could say that I've been out diligently finding a cure for ALS, or tirelessly working to fund research, or hunger-striking to bring public attention to beacon the cruelty of not having access to care facilities geared specifically to the specialized needs of the ALS patient. Alas, I have been binge-watching Scandel, The 100, and binge-listening to audiobooks. I'm currently enamored of mystery and thrillers by Chelsea Cain and Lisa Unger. I cannot do a Helluva lot these days but I can still waste time. ALS ought to have some perks. I can immerse myself in completely in entirely new situations, raise my excitement level and learn something new to me.

Tuesday

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!