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.

Dreamin'

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 brain...at 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.

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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.

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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.

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.

Happy Easter

Bliss

We're screwed

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 hair..it 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

Well.

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

PBS

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.

Wow.

Thanks to Isaac for sharing.

Doggess

Little Miss Stella is a ravishing beauty; who among us has seen her and not fallen victim to her wiles, her charms? Few, if any. I succumbed within the first moments of our acquaintance. Before long I was wrapped around her fluffy little paws, allowing myself to disregard all the proprieties, even (GASP!) table manners.

Jenny comes by every weekday morning to give me breakfast. As my devoted firstborn situates herself by my bed, Stella hops from the floor to the bench, leaps over the footboard onto the bed, and indecorously scurries up to give me morning kisses. Hoyden!  Secure in the belief that her kisses have won my heart yet again, she settles herself on my lap and waits, all the while staring at my MOUTH! Yes, dear reader, my mouth.  Unable to share a discreet treat from  my hand, I sometimes let fall from my lips the tiniest soupçon of an oopsy; if the oopsy lingers too long on my lower lip the hussy shamelessly leans in and plucks it right off. Jenny and I chuckle indulgently, ignoring the solecism.

One morning last week, Stella didn't greet me with her typical boundless, pre-oopsy enthusiasm.  Instead, a subdued little girl crept quietly into my room and was deposited on my lap. As Jenny reported on Stella's pre-dawn escapades, I was treated to pitiful looks from behind Bichon lashes (which are grown for just this sort of occasion). It so happens that Stella, like others of her species who are tempted by evil, PEED on her mama's bed! She received rather a scolding while Jenny washed the linens, a scolding that left her chastened even the next day. Betraying not an iota of interest in the most important meal of the day, she sat on my lap, head resting on crossed paws, every ounce a perfect little lady.  Jenny and I chuckled indulgently, all at the drama queen's expense.

The following day the hoyden returned, evidently choosing to look forward rather than back. Okay, it's not a choice, she's made that way.

My Muse

Cul de Sac

Dreamin'

Standing on a blacktop surface with five others, I hold an iron bar, the bottom of which has two sharp points  By my foot is a small patch of dry mud. A white pinfeather floats down from the sky and lands on top of the mud; within a moment it's covered by a glowing piece of jasper. Using  the sharp points of the bar I stir these odd ingredients until the air turns a thick orange, swirling around us--we can hear but can't see each other. As we walk I feel something hitting the back of my neck, insistent but not painful.

I find myself in a large, empty auditorium.  A neat, trim woman in a light suit is at the podium and to her left is a wall-size black screen. The woman directs me to go into the screen, without a second thought I do as she bids. The screen absorbs me. I'm not afraid, I know I'm in the right place.

Another building. Businessmen I knew several lives ago are inside but I don't want them to see me. A stranger enters the building so I follow close behind him and make my way to the elevator.

This and That

What hosts say to guests at, say, a wedding reception: We're SO glad you made it!
What some guests said to me: We're so glad you MADE it!

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Feeling self conscious in my wheelchair and worried my inadequate joystick control would hurt innocent bystanders, I entered the room (where the ceremony would take place) via the right hand aisle. Already emotional, Louise dug in the spurs when I heard the violinist; fresh tears and a shaky hand brought me to a stop as I narrowly avoided hitting the wall. It was several loonnngggg seconds before I trusted myself to roll on.

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Becky and John danced to Louis Armstrong singing We Have All the Time in the World, from the James Bond movie On Her Majesty's Secret Service. Becky is the only person I know who has a cd of James Bond theme songs--she knows them by heart and belts them out with gusto. She was raised on a steady diet of 007 and her passion is genuine.