THE ODDS (Debbie Does ALS)


I believe...

...I miss my hands and arms most of all.

If I could move my arms and flex my fingers, I'd have a much easier time operating the joystick on my wheelchair--my substitute legs. I'd be able to type QUICKLY in my text-to-speech program--my substitute voice.

I'd feed myself, wash myself, adjust my own bra straps, put on makeup, swat bugs, sign my name, raise and lower my bed's raise-able and lower-able parts. Put toothpaste on my toothbrush, lotion on my arms, polish on my nails.

I'd sneak snacks to Stella, then snuggle and squish her satiny, sherpa-like curls. Brush my hair out of my face and tuck it behind my ear. I'd stretch my arms waaayy ooovver my head. And rest my cheek in the palm of my hand.

I'd hug back and hold tight.

This is a short list, but you get the idea.


Lost Causes

 As I make my way down rue Louise, I am often tested to prove my mettle. I've adopted a Buddhisty approach to these challenges, seeking to overcome every itch, every minor discomfort, from within. (One might say it's not like I have a choice, but let's gild the lily just this once, hmmm?)

Last night, after Courtney went home but before John came home, I fooled with my laptop, hoping that, if I hit disconnect/connect enough, my dead wireless would resurrect. While I amused St. Jude, I became aware of a wispy tendril of hair near the inner corner of my left eye.

Wispy tendrils are irritating but, in most cases, aren't batshit crazy caliber--the ones that make you shudder--either. I closed my eyes to do the overcoming thing when the hair moved under my glasses. Damn. Overcoming was going to take a little longer with this  additional wrinkle. Settling back against the pillow to wait it out, I felt another movement and realized that, whatever was moving, it wasn't my was alive and had legs and was taking a stroll. 

I couldn't help but go all girly for several seconds; I screwed up my face and thought, "Eww, gross!" as the nasty bug toured my eyelid. Nothing could be done--my hands and arms refused to move. My only options were to wait for the stupid bug to get bored and move on OR submit as it bored into my head by way of my eye. (Nope, no drama queen here.)

Okay, so we all know it wasn't a head-boring bug, but it doesn't change the fact that I'm powerless to brush away even the friendliest little crawly thing that wanders onto my face. I'll need a lot more Buddha if I'm going to beat the bug within.


Wednesdaide's child


Courtney, my regular Monday aide--or Mondaide--was sick, so the agency called to say they were sending a newbie named Myra (not to be confused with the famous NurseMyra over at Gimcrack Hospital). John decided to stay home, just in case. It so happened that Myra did not have experience with ALS so John provided instruction and all went well.

Rhonda is the usual Wednesdaide, so I  was surprised that afternoon when another unfamiliar face (Heather) appeared. She seemed to understand me well enough and, though she hadn’t worked with an ALS patient before, one of her clients has MS and is immobile. I was in my cozy, comfy bed and asked her to help me to the bathroom.

I was somewhat concerned when she started to move my legs without supporting my back (quickly corrected), but when transferring me to the rollator, concern changed to trepidation;  my AL-ass was improperly placed and down to the floor I slid. A very trembly Heather scooped me up but my dead weight was uncooperative and we only succeeded in moving my legs under the bed. Mustering her strength, Heather hoisted me from under the arms and up I went, but my legs were still outstretched under the bed; my shin scraped hard against the frame but I couldn’t find my voice to protest.

At last, Heather sat me on the edge of the bed. By this time I was exhausted and my arms, shoulders, neck and leg hurt like hell. All I wanted to do was get back into bed. Since the greater part of me was already there, it seemed safe enough. Silly me. Before I could explain the process, she let go of my shoulders and dived for my legs. My upper body fell backward and the pain in my lower back made me gasp...or did I gasp because I was flat on my back? Either way, they were panicky gasps. When my legs were restored to the correct elevation, Heather pulled the rest of me into place...well, sort of, almost, except now I was too much at the foot of the bed. Heather’s solution: pull me up under the arms. Twice. It’s  Sunday and I’m still sore.

Several calls were made, and by 6:30 regular Tuesdaide Cherry was here, restoring order. Needless to say, Heather went home.

Nothing is sacrosanct



Be still, my heart

Bashful Bichon or Floozy Frise?


April's Fool

This past Friday I went to clinic for my three month inspection. Per usual, the first stop was pulmonology, where nothing was measured but my blood pressure, which was not too terrible. I enjoyed a little chat with my doctor, then rolled off to the elevator and neurology.

Clinic starts at noon but I was called at 11:45 for weight, temperature and blood pressure (yes, again). Ordinarily I cringe at the prospect of getting on the scale, but after my 13 pound drop in January I  was curious to see not if, but how much more, I lost. My friends guessed between eight and 20 pounds, but the scale was broken so  the exact amount  is a mystery--I think it must be at least eight based on how loosely my clothes fit. ANYWAY, I went back at 11:45. I waited for the various team members to start their pop-in visits.

And waited.

And waited.

At 12:30 my patience started wandering, looking for someone to validate  our parking so we could leave, but was persuaded by even-tempered Lynne to wait a little longer. By 1:00 my patience was beckoning me out the door, when in came Ellen. We had a short conversation and were finishing when Ellie appeared. FINALLY. She  conducted a very cursory exam while I attempted to communicate my frustration and displeasure (with no success, when I said I was in a bitchy mood it was interpreted as peachy mood, which made it worse). Nutrition, speech, OT and PT visited in the guise of four unknown young women who knew very little about me but understood that I was ready to go and kept their exams brief.

No one provided a reason for the one hour delay but I suspect it had something to do with the Corner Bakery delivery that arrived just before 12. Next time I'll order a salad.


Thanks to Isaac for sharing.

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