THE ODDS (Debbie Does ALS)



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.


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.


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...


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.


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'.


*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.



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.



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.

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