THE ODDS (Debbie Does ALS)


5.03.2011

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.

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

4 comments:

Wendy Leah said...

Deb - your writing is truly amazing.

Jenny said...

Mama!! I love that in your narrative voice, I can still hear you sans the louise accent. You are so clever, and this post with its allegorical assignment of characters illustrates how this disease hasn't touched your intellect. I love your beautifully wrinkly brain!!! xoxoxo pop pop pop

Deborah said...

You're both very sweet. Nice to have my own fan club.

Jannette said...

Deb-you can always make me smile :)

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