THE ODDS (Debbie Does ALS)


Love you, Tori

One morning, several weeks ago, I woke up, leaning so far left it warranted a midnight  alarm to the neighbors. Rescued and out of harm's way, I wrote a detailed account of the episode, intending to post after some editing. A combination of things got in the way of writing anything, and just as I got through my tangle of issues, the phone rang.

My niece, Tori, died.  No one had any details but it didn't matter, that this incredible young woman was gone was wrong under any circumstance. Regrettably, I didn't know her better, but it didn't take long to recognize her indefatigable, bright spirit, her enthusiasm for life, her endless capacity to love and give of herself. Her death at age 23--23!--just doesn't make any sense. My heart goes out to her parents.

I do believe that we are the sum of the people who are in our lives.  Tori touched so many, from her home in Texas to the small town in Spain where she taught English,  and all the stops along the way.

This song is from a yoga cd for children.  It makes me think of  Tori...I cry when I listen to it, but it makes me happy, too.



Another dream. This time, however, I only remember one scene. I'm in a room full of miscellaneous stuff--mops, brooms, furniture, lamps and jars--all under dust covers.   The room is dimly lit, and as I baby-step my way through,  I'm hit squarely on the back of my head.  As I fall to the ground, I think over and over, "Blunt force trauma, blunt force trauma."  (I watch a little Law & Order.)

The conk on the head in my dream manifested itself as a loud explosion in the top of my least that's how it sounded to me as I awoke. And my head felt as though it had experienced actual blunt force trauma; rivulets of tingliness coursed from crown to clavicle. Convinced that there was a head basher about, my eyes flew open and saw...nothing. It was all in my head.


She's got my back(side)

Of all the people who get me dressed, one stands out as the best panty put-er on-er. Courtney is the only caregiver who consistently avoids an exposed right flank, consequently avoiding unhappiness elsewhere.  She tugs and turns in a manner all her own, resulting in full, unwedgied coverage.
This is important stuff, people. Or is it AN important stuff? Both,  I think.

Thank you, Courtney.


You may think it's easy...

 but it snot.


Last night, I dreamt I blew my nose. Not only could I breathe forcefully enough to blow meaningfully, I also held my own tissue.


Project Runaway

Nothing says glamour quite like an ALS belly behind the unrolled waistband of a pair of yoga pants.


Working it out

Late last October, I enjoyed a brief flirtation with a local Hospice. Several of my PALS pals were involved in and highly praised their own committed, supportive Hospice relationships, so I innocently encouraged the advances of my own suitor when it came a-callin’. I and mine met with their team, we signed this form and that, la-di-dah, I was seduced by promises of care and comfort--how could I resist? The union was blessed and a satisfied moi sat back, content.

The next day was the Richmond Walk to Defeat ALS. All the usual suspects were there, including Ellen; I was eager to share my good news so I rolled over to tell her. Ellen responded with less than her usual alacrity, inquiring if I’d gotten my wheelchair and communication device, because Medicare wouldn’t cover them if I was involved with Another. Who knew Medicare was such a restrictive Sugar Daddy?!? I did not, and I did not yet possess those high-priced but highly necessary ALS accessories. As Daddy Medicare wouldn’t give me any sugar at all until I was eligible (November 1), I had to act quickly.

Upon returning home from the Walk, a call to Hospice put an end to us. “It’s not me,” I wailed, “it’s YOU!” Separation papers were signed and filed, I then turned a coquettish eye (and an outstretched hand) toward Daddy M. My guile paid off. The wheelchair--complete with controls to be used by my cheek and chin--arrived in December. The Dynavox acquisition and training were wrapped up a few weeks ago. Once again, a satisfied moi sat back, content.

Now, six months later and six months further progressed, I was asked if it wasn't time to reconsider the offers of care and comfort extended by Hospice. My craving for sugar sated, I assented; not many days later a reunion took place. Daddy Medicare will slip Hospice a dollar or two to ensure my needs are met, then will attend to the remaining rheumy-eyed devotees who need power chairs and other overpriced accessibility equipment.


NB: I'm not headed out just yet, simply taking advantage of the palliative care Hospice provides, to supplement my current program.


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.

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