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.

###

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.

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!

###

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.

###

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.

Isn't They Lovely?

Apologies for the grammar. I'm trying too hard with the Stevie Wonder thing. But isn't they?

The Princess Bride

What a weekend, what a wonderful wedding. My Becky was a beautiful Princess, her husband a tall, dark and handsome Prince Charming.

My beautiful Jenny and Cecilia were maids of honor...the entire bridal party was picture perfect. My three daughters, however, were the loveliest of all. On more than a few occasions I was told I must be so proud of my girls; I'd nod in agreement and say thank you but I thought to myself that, more than proud, I am grateful.

Since Becky and John W were legally married in November there was really no need for a licensed official to preside over this wedding, so they asked the father of the bride to perform this duty instead. Becky sent her dad his script and told him he could tweak it A LITTLE, which he did.

At home on Friday night, as John M was reading his slightly amended script, conversation turned to a certain scene from a certain movie. Jenny (who can recite dialogue from quite a number of movies) rattled off this particular dialogue and someone suggested it be included at the beginning of the ceremony to surprise Becky. Another note card was prepared.

Fast forward to Saturday at approximately 5:15pm. Bridesmaids and groomsmen in place, John W standing tall and looking fabulous in his tux. Becky, on her dad's arm, almost Little-Miss-Bouncy-Stepped* down the aisle. John M quietly gave his daughter away and took his place. Smiling, he began with these words (sans accent):



It was great, appreciated by the bride and many others.

*A very accurate childhood nickname.

Girls' night out

Jenny, Courtney and I went shoe shopping Friday night,  for shoes I can wear to the wedding. DSW was our destination; I hoped to find something to complement the silky, monochromatic ensemble hanging in my closet.

There was a time when this was an all too frequent activity, but I haven't been shoe shopping in forever. The pointy toes and high heels--once a staple--simultaneously break my heart and mock my size 11s, feet that are even harder to fit since Louise stomped on them. This night was no exception; all those beautiful, beautiful shoes, row after row of them, but none of them meant for me.

I rolled all through the store, Jenny clearing the mirrored settees from my path, Courtney replacing them after I cut swath after swath. As I neared the last row of women's shoes and approached men's, my swath fizzled, until I espied a lovely pair of neutral slippers. Yes, they were more masculine than I like, but the mocha color, roomy toebox and cuddly lining met all the important requirements. As well, I reasoned, my feet would be mostly hidden by my outfit. So I bought them, saying I would return them if something better came my way.

I took the girls to dinner at Asia Bistro and was pleased to find a Thai curry on the menu. Our  server, noticing my wheelchair and that Courtney was turning the menu pages for me, came over to offer assistance and to take our drink order. Can you guess which beverage is mine? We had rather a chuckle over this.

In addition to our meal, we enjoyed watching and listening to the other diners, especially the  July/November couple seated next to us. They had quite a serious conversation about Johnny Depp and his movies, including I Like Chocolate* (despite the fact they'd not seen it, but heard it was good). The music was 70s Motown and more than once I amused the girls when I got my middle school groove on. Yes, I had a groove. Stop laughing.

###

*Of course you know there is no such movie. Miss July was referring to Chocolat.

Good stuff

Shared by Michael.

Miscellany

My feet are ultrasensitive, especially the right heel. If there is even the slightest threat of pressure, my heel goes all diva on me and readies the whole foot for a major tantrum. The toes and top of foot swell, turn red and radiate some pretty intense heat. Rather uncomfortable.

###

The only word that comes close to describing how my skin feels: sunburnt. Any time contact is made--when getting in and out of bed, getting dressed, doing range of motion exercise, anything at all--the nerve endings in the distressed region go apeshit. Most  disagreeable.

###

The past two mornings I've woken up in a world of hurt. It's as if my collarbone is loose, and any movement from my head or shoulders results in pain. Oddly, the pain disappears when I get up. I am a very delicate flower, an orchid in fact..

###

On a lighter note, I'm happy to report that, after more than a week of troublesome coughing/choking when drinking, I finally remembered the ol' chin tuck. It's amazing what difference a tiny tweak makes in successful sipping.

###

Last but not least, I'm eliminating some pills from my twice-daily cocktail: lithium and rilutek. They aren't doing much so they won't be missed.

Operater, please

I fought kicking and screaming--well, as much as I can, though to look at me you'd think I was sitting still--but the time has come to hang up, ring off, press "end."

My darling Adam doesn't understand me anymore. Considering the amount of time we spent on the phone over the course of our friendship--so much time that I added Friends and Family to my Verizon plan when Adam switched to AT&T--I knew it was last call.  If he can't understand me, nobody can.

Losing this line of communication is just one more straw. My idiot camel must love me.

###

I can't push any buttons so texting isn't an option, either. All phone activity is conducted by my army of assistants so, if you DO text me, keep it clean (yes, Birdie, I mean you).

###

Hello

I got a very pleasant surprise last week: an email from a "long lost niece." She follows my little exercise in self-absorption and reached out across the miles...and years.

It so happens that we share a love of The City of Light. I envy her all her future adventures.

Come and play

Delightful caregiver Courtney stopped by this evening for a visit, bringing dinner, her friend Kyle and son Ethan. Dinner (salad for me, pizza for everyone else) was eaten in my room while we watched Ethan being a cutie-pie three year old.

As he chowed down on his pizza, Ethan looked around my petite chambre. His bright eyes alit on the piece of yellow paper prominently placed beside my bed. "What's that?" he asked. All the grown-ups were silent until quick-on-her-feet Jenny said, "It's a Do Not Resuscitate paper."  Satisfied with this response and not requiring any more explanation, Ethan went back to his pizza.

Jenny titled this scene Sesame Street Goes to Hospice.

Like Mike

Today's topic: legs. My legs. That used to be Strong Like Bull. Calves and quads and hamstrings that pushed me mile after mile, up and down hills, across more than two dozen marathon finish lines.

Louise initially took up residence in my right hand then baby-stepped to the left and the legs. At the time I retired I was still walking, a lurching zombie shuffle.I experienced a whoosh! moment here--less than a year later and my gammy gams are no longer Strong Like Bull, they're more Weak Like Noodles. Walking is but a distant memory.

I can assist with transfers. When lifted and supported I manage the two or three steps backward or forward to my bed, potty, shower chair, etc. It's not pretty; the right leg is weakest (surprised?) and it drags a bit. But there is a silver lining! When taking these draggy steps, it looks as if I'm moonwalking. I may take this show on the road, you know, as a moonwalking zombie.

###

For the record, my pins are a couple of twitching maniacs. From hip to toe it's twitch, twitch, twitch all day and night. My hands and arms used to twitch like that and we all.know what happened to THEM.

###

Better get my zombie on. Bonne Dimanche.

Dreamin'

I just woke up from a great dream. I was brushing my teeth, manipulating my toothbrush easily with one hand -- my RIGHT hand. It's been so long since my right hand did anything that I paused mid-brush to capture the moment.

Short but definitely sweet.

Use your imagination

One shoebox.
One  hand towel.
One-half facecloth.
One measure blue foam tubing.
Three rubber bands.
One spinning toothbrush.

Zoom

As helpful and liberating as my borrowed SmartNav is, it's a bit slow (translated VERY slow) for my purposes. It's better than nothing and I'm incredibly grateful for the loan but AARRGH! It can take forever to do anything and my limited powers of patience are practically kaput.

With any luck there'll be a Dynavox Eyegaze on my table  in the next several weeks. I visited NRH last week and test drove a nice, new model that can go from zero to 60 in the blink of an eye.

Zoom zoom.

No time like the present

The only reason for time is so that everything doesn't happen at once.  - Albert Einstein

When I first heard that quote -- many moons ago -- I envisioned all the events in my life stacked neatly in a pile, strategically separated by fine strips of cellophane, similar to slides. Without time, or the slides, everything rushes together in a sort of whoosh!, no structure or reason.

From diagnosis until about a year ago I progressed fairly slowly, meeting each new challenge with creativity and ebullience, adapting to each new normal with the panache and humility for which I am well known. Create a car key contraption, insert slide. Walk instead of run, insert slide.  Make changes to wardrobe, insert slide. And so on.

Over the past year there have been a couple of whoosh! moments, when the pace  of my progression moved too quickly for the slides to separate. So much changed so much faster that, when I stopped to reassess, the spaces between the events were blurry, indistinct.

Thank goodness for time...for the time we are given.

###

Many years ago, shopping at a department store, my two little daughters asked again and again what time it was. Unnatural mother that I am, I answered, "Time is a concept." After several minutes of this a nearby salesperson took pity on my darlings. Not bothering to disguise her impatience with me, she smiled sweetly at the girls and said, "It's 3:30, dears." I still smile at this memory.

###

Until I was unable to manipulate the clasp or strap of my various watches, I always wore one. My wrist still feels bare.

Pee-noo-moe-nyot

Still silent, except when I cough. Then a gurgly, shoulder-shaking, gaggy thing happens, tarnishing the beautiful golden quiet.

The past few days have been tedious and tiring. Up so late trying to un-gurgle that it became early morning. Sleep was no refuge; pain on my right side and irritating coughettes didn't allow much rest. One of my caregivers suggested pneumonia. Pneumonia is one of my top two ALS fears (the second is falling), and once this little seed was planted it pushed tiny roots into my thoughts. I didn't go all crazy, but I didn't dismiss the idea, either. Pneumonia, pleurisy, numerous bouts of bronchitis and too many years as a smoker leave me a tad susceptible to respiratory ailments. Worth a visit to Doc-in-the-Box.

The visit was, er, productive. I was my most charming, yukking it up with the doctor. My charm and wit, delivered with a non-voice and poor enunciation, met with faux appreciation; attempts at redelivery fell flat and forced me to realize that I'm not really as charming and witty as I like to think.

A lovely little antibiotic is already taking control and I look forward to a regular snoozefest tonight.

###

I neglected to mention that it's NYOT pneumonia. You probably got that already. You did? Okay, good.

Silence is golden

I seem to have lost my voice. Is it a cold, settled in my throat? More than likely. I had a sore throat Saturday, was croaky much of Sunday, and by the time Green Bay beat Pittsburgh I couldn't even manage a whisper. This new level of non-communication is highly irritating.

###

Say what

Adam called me today. Nothing out of the ordinary about that EXCEPT he had a hard time understanding me AND, thanks to an echo, I heard how I sound to others. Rather a wakeup call.

Tickety talk...

Beautiful sweet sweat*

I miss sweat. Not ladylike perspiration, the sweat that comes from a fabulous long run that, in warm weather, dries on my skin like a salty rime, or that, in bitter cold,  forms little crystals of ice on my cap or jacket. The sweat that flushes out toxins -- some of which I replace after the run with a delicious and nutritious Corona Light. Sweat that ran into my eyes and ears, stinging one and tickling the other.

It's basketball season, my favorite spectator sport. No, I did not play (unless forced to in gym), in fact, I regarded basketball with disdain. (Those who can, play; those who were usually picked last and cannot, disdain.) Players running back and forth, trading points--what was  THAT  all about? Worse yet, they were sweaty. Disgusting! But then I started running and realized there was value and purpose in sweat, I daresay even a beauty.

Along with my new appreciation of sweat came the first hints of an interest in basketball, particularly Maryland Terrapins basketball. I admit, I was influenced by some  special friends who are alums, it helped that the team was enjoying a good season. Little by little, my understanding of the game grew and I was hooked. The once despised sweat was now a testament to the athleticism and energy of the players.

College hoops dunked me (heh heh) into a Washington Wizards' basket when two Terps landed on the Wizards' court. I'm now a lost cause, preferring college ball to the pros, but loving it all.

Where was I going with all this? Oh, right. Sweat. During the Wizards' game against Dallas last night, one of the Mavs shook his head in a way that reminded me of how I shook my head when sweat ran into my ear...tickling it.

###

Go Terps!

###

*Who knows the origin of the catchy title?

Dreamin'

In a huge indoor football field, people sit in clusters; groups of two or three, occasionally  more, are randomly scattered. Everyone, myself included, is waiting to be tested. A much younger version of me responds when called. Unseen interviewers ask silent questions, after which  I'm infused with long threads of brilliant blue light. Glowing under my skin, the light invigorates me and fills me with a joy I can't describe, and I dance with abandon.

Another interview follows the dance. Seated on a wooden bench, I'm beyond happy to see beads of fluorescent green sweat on my body -- which is unclothed. I don't care, my many caregivers, traumatized daughters and one bossy (and very good) friend have forced me to overcome my modesty.

###


I would love love LOVE to dance like that again, awake or asleep.

Dreamin'

I'm walking through  the office of the start up where I worked in '99-'00, but when I turn a corner I am in the operations center of the bank. There are people everywhere, some of whom I recognize, and I move from one to another, surprised I remember so many.  Wandering through empty offices and deserted corridors, I happen upon a large (and empty) auditorium. On stage is a gigantic touch screen displaying  an image of an ice cold bottle of Coke. I know it is cold from the way the bottle is sweating. It's so realistic  I'm reluctant  to touch the screen to change the display. It is NOT cold and wet, of course, but it won't budge. I try swiping left and right, using both hands, arms, even shoulders, all to no avail. Abandoning my efforts, I leave.

I'm in Wyoming. It's hot and dusty, and there are many people in line to go to a high-walled fort. I'm with several women, including my sister-in-law, who says the fort is my brother's favorite place. We decide to go in, but instead of waiting, we hold our arms together and FLY over the wall.

Alone, I walk in and out of random buildings, all of them unexceptional and empty. Turning onto another dusty street I stop, something is not right. I run away but I'm too slow. My only hope is to fly but I don't know  if I can. I put my arms together, look up, and I am airborne! Swooping this way and that, I fly and fly.

Definitely my kind of dream.

###

Mystery solved

Yesterday's impassioned enquiry yielded the desired result and I now know the identity of the gift givers.

Thank you, my dear friends, for the beautiful print of a lovely part of my favorite city . Thank you, too, for the tasty treats you delivered "this weekend," and thank you for the visits, and the cards from the kids.  (Nice job on the cursive!)

I'm lucky that you are part of my sum.

Thank you, (insert name here)

The other day our friendly UPS man delivered a package containing a wonderful framed print, but the sender's name was nowhere to be found. I have an idea who might be responsible for this act of kindness, but just an idea. Anybody out there able to identify the giver behind the gift?

'Tis better to be silent...

In recent days I've noticed an interesting phenomenon: When I'm talking to two or more people, there comes a time when one or another of the group shifts their gaze from me and looks beseechingly at  the most advanced translator present, either daughter or caregiver or friend. The translator fills in the blank and we move on.

I recognize the look on their faces because I've worn the expression myself, talking to others with ALS. Not wishing to offend but not understanding, I'd look for someone to throw me a rope. My family seems to be adapting well, but if I'm tired or I try to say too much, they struggle. Unfortunately for them, my rope throwing days are over.

As a result of my altered speech, I am not talking as much as I used to. Nobody is struggling with that.

This 'n that

Writing with the SmartNav is rather tedious but it's better than nothing. NRH called today to schedule my needs assessment; with luck I'll be using a speedier system before too long.

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My left hand, envious of her slothful sister, is mimicking (extremely convincingly) almost all of her annoying attributes. It's surreal to be attached to hands that do NOTHING. Stupid Louise . I wonder what she's doing with my real hands...

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Another example of how Louise-som I am these days: I cannot walk, not even the hand held little shuffle I managed only a month ago. Now  I bear my weight during transfers. Period. Added bonus: rubbery ankles when I get out of bed. Makes the first transfer of the day verrry exciting.

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Let's see, what else can I share that will enchant my admirers? How about the way I lean to the right (physically, not politically), or how I "leak" ever so slightly from the right corner of my mouth? How my navy Crocs are worn with everything (I'll get something pointy-toed for the wedding)? Too much, you say? Hard to believe so many attractive characteristics are wrapped up in one phat* package? This is just the tip of the iceberg, darlin'.

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*I first heard this word in 1970, when my friend, Theresa Youngblood, explained that, if a boy called you "phat" (versus "fat"), it was a good thing,a compliment. My 12-year old brain was at a loss trying to figure out how to tell the difference without asking the spelling. Fortunately, no boy ever called me anything, so I was spared. Is this little bon mot even used anymore?

Feasting with friends

The running club's annual banquet was held Sunday. I wasn't going to go--I feel somewhat self conscious in a roomful of runners--but realized I was letting stupid pride get in the way. So I went, kindly squired by Janice. The banquet was on the upper level of a local restaurant and we'd been assured it was accessible via an elevator. Well, there are elevators and then there are elevators. This elevator reminded me of the petits ascenseurs I've ridden in Europe, hardly big enough for my power wheelchair. A couple of strong, tenacious young men came to my rescue, however, and successfully parallel parked the chair in the tiny space and I was banquet bound. 

As I exited the lift and came into the dining room, Janice and Colleen by my side, it didn't take long to spot the table where a (very large) space was ready for me. All the usual suspects were there: in addition to Janice and Colleen  were Jannette, Brenda, Alice, Annie, and Arlowene.  Any self consciousness disappeared when I rolled up and took my place.

Several people came over to say hello but conversations were brief; my voice couldn't be heard over the crowd and my enunciation is terrible. Regardless, it was nice to see so many friends.

Prior to arriving, I asked Janice if she would be my voice and thank the club for the ramp. She did a lovely job, much better than I would have, with or without my impediment.  The man who was honored as the club's volunteer of the year (and who did most of the work on the ramp) came over after the program and I thanked him personally for his kindness.

You know, I am surrounded by kind, goodhearted people. I am so lucky.

Ballet de dent

It finally happened. Despite my best efforts, I can't hold onto my toothbrush well enough to give my teeth a good scrubbing. I'm not prepared just yet to bring a trois into our little pas de deux, so I need to be creative. I'm choreographing a possible new step. ..I'll let you know.

If wishes were horses...

It's late, after  11, and my eyes are burning. The dry heat floating out of the vents doesn't  help. As well, my day began earlier than usual and included  a movie outing (thanks, Julie!).  It's no surprise my eyes are tired.

I wish I could still rub them.  Make a fist and press the knuckle of the first finger onto the lid and massage away  the tired, the burn... such a small thing, really, but sorely missed.

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Lucky number

Yesterday was clinic day. Ready for an update? Of course you are.

First stop was pulmonology, where I usually get my FVC tested. Not this time. Just blood oxygen and blood pressure, both of which weren't terrible. Following a discussion about my favorite subjects (saliva and more saliva), the nice doctor wrote an order for a suction machine, complete with a Yankauer suction tip.  Don't worry, I promise not to post any pictures of actual  Yankauering.

On to neurology and the rest of the team. Nothing out of the ordinary...EXCEPT for my weight.

SOMEHOW I managed to lose 13 pounds. I know this isn't necessarily a good thing -- remember, fat is good for ALS -- but I confess to being more than a little pleased.  I will follow the advice of my nutritionist (eat, snack, protein, protein, protein, etc.), but right now this 50-ish woman with AL-ass is remembering slimmer, better days.

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Isn't she lovely?

Not so very long ago, I composed and responded to email, wrote entertaining blog entries, did my banking and a hundred other things, all by myself using voice recognition software and the ring finger of my left hand. When dictating, the occasional background noises provided by a barking Bichon and/or a communicative cockatiel necessitated an expostulatory "SCRATCH THAT!" to erase their unwanted contributions. As my speech worsened, it wasn't the animals offering up the gibberish, it was moi. "SCRATCH THAT!" punctuated an increasing number of dictation attempts, until even "SCRATCH THAT!" was  transcribed as "congrats grads" or the like. Frustrated and impatient, I  resorted to my single functioning digit to make corrections and type an occasional blurb. It didn't take very long for  my shoulder and neck to point out the flaws in this arrangement: unable to  support the weight of my man-hand,my shoulder dropped it (finger and all) --not the most effective method of typing. Helpful surrogates came to my aid, but availability was a factor. I wondered aloud (in virtual print) what I needed to do to regain some -- any -- type-ability.

Enter the ALS Association AND their loan closet. Until I am evaluated by the National Rehabilitation Hospital and can get an Eyegaze System, I am happily -- if slowly -- using a borrowed SmartNav System. A piece of reflective tape affixed to the bridge of my glasses turns my head into a giant mouse, positioning the cursor over letter after letter on the on-screen keyboard produces a word, then a sentence, then a paragraph or two...or more.

Like any hand operated mouse, this tape/glasses /head mouse requires regular recalibration, but to do so I have to swing my head side to side, up and down.  I sort of look like Stevie Wonder. Sort of.