Am I serious? Am I now?
by Cathy Speck
(FYI for iPinion readers: “rollator” is the new “official” name for an extra sturdy walker with bigger wheels. Some rollators are equipped to easily transform into manual wheelchairs. How do I pronounce it? Let’s say: ROLL-ah-tur. Sounds good to me.
Also, I have ALS, a fatal neurodegenerative disease with a prognosis of two to five years upon diagnosis. I’ll be coming upon four years in January.)
Here I am again today, but it’s really tomorrow for you.
I start my days with typo-ing , and I start my “go to sleep” routine with typo-ing. Sometimes during my late-night meanderings, my head falls back, my mouth hangs open, then I start gasping for air —you know one of those things humans do to stay alive. That pretty much jolts me awake even if it takes me two or five times of the whole gasping for air routine. When I eventually open my eyes and begin to shut down my laptop, I’ll notice strange codes from aliens on my laptop monitor. Okay, but seriously now folks, I’ll read something like: alllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllkkkkkkkkkjjjjjjjjjjjjjjjjjjj or some variation of that. Maybe I can teach myself to turn lucid dreaming into lucid typo-ing — I’d have way more columns for iPinion.
But seriously (why do I need to tell people when I’m being serious? Or why do I choose to tell people I’m not kidding. Or perhaps the question is why do I write so much crazy stuff anyway? This was a rhetorical question, and I don’t feel up to analysis at this moment), I am sharing with you my comment to a post on a confidential, private online ALS support group. This is a topic I have not heard or read about — anywhere. What is it? Something like: Do some PALS (Person with ALS) feel like we’re dying, but not disabled? It’s shallow conversations like this one that keep me coming back for more.
Here is an edited version of what I said in reply to that post:
“I’m following in the footsteps and wheelchair tracks of at least four family members who died of ALS before me, so I know what’s happening to my body. I don’t consider myself disabled or handicapped, sick or brave for being ‘the way I am.’ (I’m not talking about being gay.) I’m just dying, and living every moment of it. You can quote me on that. I feel like I have it easy compared to the people who live with their disabilities everyday knowing that it might never get better. I, on the other hand (not handicapped hand) will suffer for awhile, die, and… I’ll be fine again.
Alrighty then, if I don’t consider myself disabled, do I use the blue handicap parking spots? You bet I do — I gotta get something outta this ‘dyin’ deal.’ And I really do need the ‘special treatment’ in the parking lot — my legs are dying too.
I do have awkward moments when I’m telling stories about something that happened before I got ALS, or is it pre-diagnosis, or after diagnosis but still able sing, or still able to walk almost a very slow mile with my rollator. I can’t walk that far anymore with my rollator, but I don’t say I can’t walk like that anymore because I’m more disabled. See what I mean? I was having symptoms for at least a year before I got the diagnosis, and the same goes for my mom and two brothers. So how do I tell these stories without using so many parenthetical phrases? This is not a rhetorical question — I’m open to suggestions.
I am also trying to explain that because I am dying, I am choosing to love and live each moment the best I can. I believe living and dying are the same thing — you can’t have one without the other, and it’s a joyful, more peaceful way to live… and die, of course. There is nothing ‘bad’ about dying. It can be an awakening way of being mindful.”Merrily we move along to another delightful living/dying topic: My best friend Blanchie returned to her home in Long Beach last night. Way back in the mid to late 1980s, when hairstyles were atrocious, and I was still drinking and not eating, Blanchie and I were girlfriends/partners/lovers. If you’re not well-versed in lesbian-hood, you might not know the statistics of how many women remain good friends after breaking up with their girlfriends — even if someone was “cheating.” At this very moment I cannot recite the exact national percentage, but I know my own stats, and Blanchie’s, and my wife’s, and we all are good examples of staying close, even best friends.
Enny hoo, Blanchie, Linda, Mazie and I had such a “real” this weekend. A real what you ask? Everything. Blanchie is my BFF, my Bestie, my very own pet Blanchie Grrl. She still has chemo every three weeks, but we can schedule our visits around that. She and I are on the same “energy level” —kind of. She needs more naps than I do, but she can walk around more than I can. OMG! Have I taken “competitive” to a morbid new level? Not! OMG! Now I’m being serious. Really.
The ALS progression is taking me to a new level. I truly accept that when I’m tired, I do need to be pushed around in my rollator, which easily becomes a wheelchair. And I do have an electric scooter that I can use for walks — wait. I can scoot along with others who are walking outside or inside a large indoor space like the Davis Food Co-op. I needed to be pushed last Saturday during our caroling parades at the convalescent hospitals in Davis. It’s kinda bitter-sweetly ironic; I was rolling around in my decorated wheelchair with oxygen tubes up my nostrils, and I was “directing our choir” at the same time. Pretty cool.
That will be a great story for my iPinion column, but don’t hold your breath. And don’t let yourself fall asleep in a comfortable recliner and wake up gasping for air. I’ve been working on this column for over 10 hours. These typo-ing fingers don’t listen to my brain. Or maybe they do listen, but pretend they can’t, so they can’t typo really weird stuff to make me look bad.
The bittersweet caroling story will be ready for you in January, unless… my fingers go on strike.