THE ODDS (Debbie Does ALS)


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).



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.



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.



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.



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?

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