The Odds

Love you, Tori

2011-06-07T05:57:00.683-04:00

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'

2011-05-19T04:09:00.000-04:00

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)

2011-05-15T10:59:00.000-04:00

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...

2011-05-06T12:43:00.000-04:00

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

2011-05-04T12:43:00.000-04:00

Nothing says glamour quite like an ALS belly behind the unrolled waistband of a pair of yoga pants.

Working it out

2011-05-03T04:10:00.000-04:00

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...

2011-04-26T04:02:00.001-04:00

...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

2011-04-24T10:34:00.000-04:00

Bliss

2011-04-22T16:29:00.000-04:00

We're screwed

2011-04-22T02:37:00.000-04:00

Lost Causes

2011-04-13T18:15:00.000-04:00

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

2011-04-10T11:21:00.002-04:00

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

2011-04-10T09:39:00.000-04:00

PBS

Be still, my heart

2011-04-09T17:51:00.000-04:00

Bashful Bichon or Floozy Frise?

April's Fool

2011-04-07T18:27:00.000-04:00

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.

2011-04-07T11:27:00.000-04:00

Thanks to Isaac for sharing.

Doggess

2011-03-28T17:02:00.001-04:00

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

2011-03-23T11:00:00.000-04:00


Cul de Sac

Dreamin'

2011-03-20T22:23:00.000-04:00

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

2011-03-18T00:52:00.001-04:00

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?

2011-03-17T02:54:00.000-04:00

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

The Princess Bride

2011-03-14T16:20:00.000-04:00

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

2011-03-06T19:51:00.000-05:00

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

2011-03-04T16:32:00.000-05:00

Shared by Michael.

Miscellany

2011-03-02T11:51:00.000-05:00

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

2011-02-28T11:19:00.002-05:00

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

2011-02-28T10:54:00.000-05:00

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

2011-02-24T03:21:00.001-05:00

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

2011-02-20T15:40:00.000-05:00

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'

2011-02-16T03:18:00.000-05:00

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

2011-02-14T00:15:00.000-05:00

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

Zoom

2011-02-13T23:42:00.000-05:00

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

2011-02-13T21:16:00.001-05:00

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

2011-02-10T03:01:00.003-05:00

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

2011-02-08T03:30:00.000-05:00

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

2011-02-02T03:40:00.001-05:00

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*

2011-02-01T23:25:00.000-05:00

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'

2011-01-28T20:21:00.000-05:00

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'

2011-01-28T09:58:00.001-05:00

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

2011-01-25T11:36:00.000-05:00

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)

2011-01-23T21:52:00.000-05:00

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...

2011-01-22T22:48:00.000-05:00

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

2011-01-21T11:11:00.000-05:00

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

2011-01-20T00:43:00.000-05:00

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

2011-01-18T12:31:00.001-05:00

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...

2011-01-13T02:50:00.001-05:00

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

2011-01-09T21:33:00.000-05:00

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?

2011-01-08T00:34:00.000-05:00

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.

The daily double

2010-12-31T21:49:00.001-05:00

Watching Jeopardy tonight was an exercise in frustration. Why? Because the sweet little old lady (who ultimately won) took FOREVER to select the next category. Very unkindly, I yelled at the tv and told the cow to speed it up. Jenny and John started laughing and offered up an hilarious image of ALS patients as Jeopardy contestants, the funniest image was how long it would take the contestants to push the button to ring in.

We are all twisted.

jm

Out of the mouths of babes

2010-12-31T19:04:00.000-05:00

"If I ever need anyone to spit in my hand, I know you're there for me."

-JM, to her mom

Dreamin'

2010-12-31T18:59:00.002-05:00

Alright boys and girls, it is time for another episode of Dreamin' with Debbie.

I am at an academic facility. A meeting I attended just concluded and I see Ellen Cochrane from the ALS Association. As I make my way over to speak with her, three women approach her and they begin to talk. Ellen invites them to her bungalow and I follow, thinking I will be able to talk with her. They go inside and I wait in an anteroom, occupying myself with my iPad. After what seems like a very long time, I gather my things to leave. At the same time, Ellen and her friends emerge and Ellen asks me to stay but I cannot.

iPad in hand, I begin the walk to my own bungalow, which is on the campus. I've never seen it and don't know exactly where it is, but every bungalow has the resident's name on the door. It's raining outside and I'm worried about getting wet. I am wearing high heeled boots, which seem inadequate, particularly when I have to go through a drain. I continue up a hill, confident I will find my cottage when I see a very well-appointed residence to my left. I am not surprised to see that it belongs to my darling Adam. At this moment, he calls me on my phone but our signal is sketchy and we lose each other.

My family and I are driving down the road to our house. Our progress is stopped, however, because the car in front of us won't move. I get out of the car, intending to walk the rest of the way but it is cold and raining so I get back inside.

I am in Norfolk. In the water. Yes, the water. An emergency situation exists further out, and I see waiters carrying trays, delivering drinks. I wonder how the waiters--who are wearing chefs' toques--manage to glide so gracefully back and forth, never spilling a drop. I then see they are wearing rescue flotation devices (shaped like small torpedos) on their feet, held in place by straps across the instep. I, too, am making my way quickly through the water because I am holding on to yet another flotation device, upon which stand John, Jenny, and Becky. My grip begins to fail, I let go...and start to sink. I'm afraid, but I know this is what has to happen.

That's it. The next thing I know, there's a knock at the door, and in comes good buddy Lynne.

Happy New Year's Eve

2010-12-31T18:59:00.001-05:00

I took the new ramp for a test drive today. Fantastic. To all my friends who made all my home's entrances accessible, I thank you from the bottom of my heart.

A note of thanks

2010-12-29T16:13:00.004-05:00

I hear hammering outside my window, not the hammering of a lovely little woodpecker, but the serious hammering of people who are building something. That something is a ramp, a ramp which will enable me to get into my house with ease.

Until recently I was able to climb (with lots of assistance) the single step from my front porch to my foyer. Louise was getting tired of lifting my legs, so journeys through the front door all but ceased. Lynne started making noise about a solution.

Coincidentally, several weeks ago, an email was received by the directors of the Fredericksburg Area Running Club (FARC) which begat a flurry of emails and ideas on how to support one of the club's members. Ultimately, the decision was made that support was best offered in the shape of a ramp. Yes, I am the fortunate member. I am touched and gratified by the good will exhibited by these kind people.

(It's worth noting that the hammering is occasionally punctuated by a curse. I'm envisioning some purple thumbs.)

jm

A series of uncomfortable events

2010-12-20T10:57:00.002-05:00

Have you ever had one of those nights? Where no matter what, something is just off?

I was perfectly situated in my lovely bed by 10 PM. Reading always puts me to sleep and this night was no exception; I began to drowse within the hour. John came in, turned off the lights, and put my iPad away. I settled back against my very inviting pillow and was out.

From my position on the bed, I'm not able to see either of the two clocks in my room, so I don't know what time it was when I woke up. It was pitch black outside my window, so I knew it was either very late or very early. Regardless, I woke up because the heat was oppressive. I listened for what seemed an eternity--the furnace roared without taking a rest. Not wanting to disturb him, but knowing I would go mad if I didn't find some relief from this heat, I called John. He stumbled, still mostly asleep, to the thermostat and adjusted it. It wasn't long before I noticed an improvement, and was able to go back to sleep.

Sleep was again interrupted when I moved my legs and the pillow under them shifted; my attempts at repositioning the pillow caused my blanket to get bunched up around my knees, leaving my feet exposed and cold. Poor John was called on a second time to correct pillow and blanket.

By this time, I was fully awake. I stared into space thinking about nothing and everything. I looked around the room and was not happy to see a giant spider walking on the wall across from me. My eyes started to sting, then water, tears running down my face. The idiot tickle teased, so naturally I began to cough, which caused my right arm to relocate away from its supportive pillow. Try as I might, I couldn't move my arm back. To add insult to injury, my sleeve bunched around my elbow--very irritating, almost painful, because of the bunchy wrinkles (the sleeve, not the arm). The pillow behind my head also reacted to my coughing by shifting just enough to rob it of any pleasantness. I looked at the wall, but the spider was nowhere to be seen...very soon I was convinced it was walking across my chest. So there I was, arm and pillow out of position, tears drying on my face, with a spider walking on my defenseless lump of a body. Should I wake John a third time? I didn't have the heart.

I would say I tossed and turned the rest of the night, but we all know that would be a huge exaggeration. What isn't an exaggeration is that my mind tossed and turned and I did not get any real sleep for the next several hours.

Thank goodness I know how to dig deep and get through a tough course.

jm

Fun with Dick and Jane

2010-12-18T19:21:00.002-05:00

Thank you, Kenny and JR for my tasty treats.

bw

Knight of the round tissue.

2010-12-18T16:04:00.003-05:00

Believe it or not I found two stinkbugs in my house last night.

The first one was crawling on my window. I asked Courtney if she would please remove the bug, taking care not to smush it (because we all know what happens when you smush a stinkbug). She did, without incident.

Not long after, we heard something hit the inside of my table lamp. Courtney said it was just a moth, but I said--jokingly--that it was probably another stupid stinkbug. We both laughed, and Courtney said it would probably land on me after I went to bed.

Courtney is a wicked, evil cow. She'd been gone about half an hour when I looked up and saw THE STUPID STINKBUG on my blanket. Cecilia was downstairs with her boyfriend, Alex, so I sent her a text message saying I needed help. She was quick to respond but by the time she came upstairs the stupid stinkbug was no longer on the blanket. Carefully lifting the blanket off my feet, Cecilia jumped and made a face, and told me the stinkbug was on my foot. Knowing she wouldn't be any help, I asked her to get Alex.

Alex is a nice boy. He always comes in to say hello and always stops in to say goodbye. That is the extent of our relationship. I'm sure he was horrified at the prospect of removing a stinkbug from my ALSy feet. But he bravely entered my room, tissue in hand. Poor Alex. The stinkbug was no longer on my foot, it had crawled up onto the side of my shin. Evincing no great disgust, he very ably extricated the stupid stinkbug and summarily disposed of it.

Alex is my hero.

bw

Spit or Swallow?

2010-12-17T21:36:00.003-05:00

In the late 1970s on Saturday Night Live, Steve Martin played the character Theodoric of York, a medieval barber. During one skit, I recall the presence of a drool bucket. When it sloshed and spilled, my very sensitive stomach lurched and I felt utterly nauseous.

Fast forward 30 something years. I have been blessed with a disease that has wrought many changes, not the least of which is the overproduction of saliva. In the wake of my recent cold I seem to have ramped THAT up to the point where it is becoming problematic. As before, it causes a little tickle in my throat, which leads to a cough, then a yawn or a sneeze, which results in a runny nose and watery eyes. Every damn thing on my face leaks some sort of foul fluid. And my sensitive stomach is repulsed.

I don't have a drool bucket, I have a nasty washcloth as well as the floor of my shower (bleah). Gallons of thick, bubbly, viscous slime are daily expelled into these waiting mediums. On a happier note, just as I see things in my neighbors' trees, so, too, do I see things in these expulsions. Yes, I am thoroughly off my rocker.

These lessons in humility are becoming tiresome.

cl/bw

I'm back

2010-12-14T09:19:00.004-05:00

Yes, it's me. Well, actually it's Courtney, tonight's caregiver. Still unable to make my dictation software understand any but a few words, I have called in the reserves to be my fingers. Hopefully I will remember all of my brilliant insights until she arrives to put finger to keyboard.

More to come...

Postscript: the preceding was kindly reviewed and edited by my own Jen-ographer. I consider myself fortunate indeed to have so many helping hands.

Hair today, gone tomorrow

2010-12-13T22:19:00.005-05:00

I have been going to the same hairstylist for about five years. For the most part, my "go to the salon" outfit consisted of jeans, a salon-friendly top, pointy-toed heels or boots, and a big purse--so big that it got its own chair. On two occasions I showed up in sweaty running clothes--poor Ann. More ALS friendly clothing became the standard about 18 months ago, until today.

It's been almost two months since I saw Ann; there are stairs in her shop and I don't do stairs anymore. We tried the home salon of one of her co-workers--that only worked one time. Ann is so kind she offered to come to my house, so we made a date for this morning.

What little dignity I possessed disappeared at 8:52 this morning. My beautiful, lovely stylist came to my house but I was not yet ready. I was still in bed with messy hair, watery eyes, dry mouth and cracked lips, a vision to behold. Adding to my allure were my practical--though hideous--briefs. Before John rolled me to the bathroom, Ann tactfully excused herself. I emerged, still clad in my pjs, light years away from the be-booted and be-pursed woman of only a few years ago.

Thank you, Louise for forcing humility down my throat. Do what you will, I still have great hair.

The cold.

2010-12-04T11:14:00.000-05:00

The sore throat is gone and SO FAR the chest remains unmolested. Unfortunately there is STUFF (bleah) at the back of my throat where it meets my nasal passages and my speech has been adversely affected. If I didn't have it before, I definitely have an ALS accent now. Consequently I cannot dictate because my voice recognition software doesn't speak my new language.

It's not likely I will go back to my former beautiful speaking voice so I need to move to the next level in communications technology. At my last clinic, the speech therapist made some noise on this subject so a phone call is on my to-do list. I just have to find someone to make the call for me.

(The preceding was kindly typed by 3:58 marathoner Mrs. John Wallace.)

Aiding my recovery

2010-12-02T15:27:00.000-05:00

Oh no...

2010-11-29T13:25:00.000-05:00

Yesterday morning I woke up with a sore throat, specifically a sore left throat. It hurt to swallow, oh, how it hurt. As the day progressed the pain abated but, as I got ready for bed, it returned in full force. I popped a pain reliever and went to bed, and dreamt that I was fainting. This morning, the right side of my throat complained along with the left. I now have the sorest of sore throats. Bleah.

What I am not looking forward to is the chest congestion that ALWAYS follows a sore throat, at least that is my experience. My cougher isn't coughing so well these days.

One of my favorite recipes (a recipe for dasister)

2010-11-24T14:39:00.001-05:00

1 beautiful sister
2 strawberry champagne cupcakes
4 new movies
1 bowl of popcorn (with extra butter)
Mix all together and warm at room temperature for six hours.
These are the ingredients for a perfectly wonderful day.

Thank you, Wendy. I love you.

Ouch

2010-11-23T17:02:00.001-05:00

My left shoulder and collarbone are feeling a mite poorly today. Why, you ask? Well, it's because my two curly ALS toes decided to drop me on my AL-ass last night. It wasn't so much the fall that caused the shoulder/collarbone complaint, it was the hoisting up from the floor--my caregiver's only recourse was to hook me under the arms and lift with all her might. Clearly, I need to work on my upper body strength if I'm going to pull this type of prank in the future.

I let her win

2010-11-19T12:24:00.000-05:00

Another thing my darling Jenny does during our morning repast is stretch and straighten my right arm; it feels wonderful after a long night of being bent across my stomach. Even better, she stretches my thumb away from my hand. Pure bliss.

While she was stretching my thumb this morning, my dear girl decided we should thumb wrestle. Guess who won.

More wisdom

2010-11-19T12:23:00.000-05:00

Working in the outreach department of our regional library means that Jenny must visit a number of retirement homes. The stories she tells about the residents are hysterical: the woman who has three books and doesn't NEED anything from the library, the old man who hit her with his cane (she was not harmed), the man who likes Disney Channel DVDs, and others. Her telling of these encounters is so comical and I laugh like the immoderate fool I am.

Jenny had just given me a sip of coffee when she told me she was visiting Disney Channel man today, to bring him new episodes of The Suite Life of Zack & Cody. I found this so absurdly funny that I choked on my coffee, losing the entire mouthful.

Poor Jenny felt so bad, and uttered a new nugget of wisdom: "the journey from joke to choke is very short."

Not in a tree...

2010-11-18T15:13:00.001-05:00

I had one hell of a dream last night. Here, in no particular order, are the events that occurred in my Land of Nod.

Cast of characters:
Me
Wendy
Jenny
Becky
ALS patient 1
ALS patient 2 (very pregnant)
patient 2's caregiver
patient 2's OB/GYN
team of random neurologists
random group of Becky's friends
a couple of young mothers with their small children
a group of random over-50s, including a man I met at the bank in 1997 or 98 and Craig T. Nelson.

I was on a train, sitting near ALS patient 1. He wanted to listen to his iPod on the train platform (which, curiously, floated beside the moving train), so we both went out and sat on the metal bench outside the door to our car. Neither of us were in wheelchairs; he sat comfortably on the bench, arms outstretched and legs crossed. I was using my MacBook, typing with both hands.

Back on the train, I sat with patient 2 and her OB/GYN, who asked me the date of my last breast exam. When I said it was more than a year ago, he performed one right then and there. Patient 2 and I chatted casually until the doctor informed me there were several lumps under my left armpit.

Patient 2 and I went out to the platform only to find it was a marshy wetland. Walking through this made patient 2 very tired. Her strapping caregiver appeared and carried her back as I followed. There was a moment of panic because we could not find the door to our car. When the door (with a large number 3) was located, everyone was relieved.

Now seated on the train, I plugged in my laptop; the outlet was unique as it accommodated any sort of plug. Patient 2's caregiver asked if he could use the outlet, when I said yes he did a fist pump. I yelled, "Project 2600!" which drew appreciative smiles from those nearby.

At the end of the car was a group of Becky's friends. They were goofing around near an open door when one of them lost his grip. He was consumed by blue electric light; as the train moved on the blue light grew smaller. Becky was sad and told me this particular friend was special to many people.

I saw that patient 1 was back in his seat.

My sister and I were visiting churches, looking for living saints. We decided not to go to Notre Dame because all the saints there were already dead.

After taking a shower, I gathered my clothes and was distressed because they were wet. Becky pointed out some dry benches (shaped like pieces of pie) and I arranged my clothes.

Also on the benches were many pieces of loud, gaudy jewelry intended for fashion dolls. These caught the attention of a group of little Pakistani girls (not sure why I knew that) and their mothers, so I gave the jewelry away to them. As it happened, we were next door to the jewelry factory and were able to see the jewelry making process: the components of each specific piece were in a tray which was placed in front of a worker (dressed a la Sailor Moon), after a piece was complete a new tray appeared.

One of the mothers was very pale. Her name was Lily. Several of the little girls were also quite pale, due to white makeup that stopped at the neck.

A neurologist wheeled me down the aisle, asking me questions like, "can you walk?" "do you burp?" etc. He and his team advised me my responses would be judged by how long I took to answer. All the neurologists looked alike. As we made our way down the aisle, I noticed a little bag on the floor; I could not tell what was in it but I thought it was a stuffed animal.

Suddenly a woman called out that her baby was missing. Little toys scattered all over the floor. I suggested someone look in the little bag but, when they did, all they discovered was a large piece of candy shaped like a star.

I was taken to a room where Jenny was waiting for me at a table. On the table was a Toshiba scanner, a gift premium I received with a recent purchase. As Jenny and I admired the scanner, a small crowd of people over 50 gathered behind us. Included in this small crowd were Craig T. Nelson and a man I met at the bank in the late 90s. I looked over at Craig T. Nelson, then at the man...who was smoothing my hair. When he saw me look, he began smoothing Jenny's hair, too.

This is where I woke up. Thoughts?

###

No Kevin Bacon

2010-11-17T13:23:00.002-05:00

During breakfast this morning, Jenny told me one of the women in my neighborhood wanted to know when she might visit. Curious to know how she contacted Jenny, I asked if they were friends on Facebook. Smiling, Jenny said that my neighbor asked her son to ask his girlfriend to ask her brother to ask his ex-girlfriend (Jenny) to ask me. Talk about six degrees of separation.

It's not the drugs, it's my imagination. Really.

2010-11-16T18:34:00.000-05:00

From the no-longer-so-stupid chair in my room I can look out the window and see my neighbors' tall fir trees. You will probably think I'm nuts when I tell you that each day I see something in the branches: a pirate face, a clown face -- each day brings a new image. Today I saw the outline of a cat's head, one that might have been drawn by Modigliani. Imagine the face below tilted sideways and with pointy ears on top of its head, that's what I saw in my neighbors' tree. Oh, and a maniacal goldfish.

Modigliani

Maybe a couple of beer koozies?

2010-11-15T14:22:00.000-05:00

You know what I really, really don't like? I don't like how dry my mouth becomes when I sleep.

In order to breathe comfortably, I sleep with my head and chest elevated (thank you, happy hospital bed). Sleeping this way, however, causes my jaw to drop and my mouth to open, resulting in a lot of dryness. Throw in the nightly amitriptyline and you have a hot, dry mess. I wake up periodically throughout the night, conscious of discomfort, and try to close my mouth and stimulate some salivary succor. Any relief is short lived -- once I fall back to sleep my jaw drops and the cycle repeats.

What I need is a chin strap to hold my jaw in place. Neoprene looks to be the most comfortable, stretchy and soft. I doubt chin straps are available at my local CVS so I will order one. In the meantime I'll have to be creative. Any suggestions?

Perspective

2010-11-15T12:27:00.000-05:00

Girls tough

2010-11-15T11:08:00.000-05:00

Jenny, to me, as she fed me an orange: Bringing breakfast to you is like Tuesdays with Morrie because I come bearing food.
Me: But I do not impart any words of wisdom.
Jenny: Well, I think words of wisdom. Does that count?

In other wisdom news, our very own Rebecca Sophia ran her first marathon in 3:58. (And that is So-FEE-a, not So-FIE-a, which is how they pronounce it down here.) Congratulations, Becky!

Once upon a time....

2010-11-12T18:31:00.001-05:00

Good friends, good race, good times. Quantico half, September '06.

So many miles...

2010-11-12T13:56:00.001-05:00

Yesterday I had a lovely lunch with my dear friends Mel and Suzanne. The restaurant -- one of our favorites -- is located in Woodbridge which meant someone (Mel) had to come fetch me. Taking into account the fact that she lives in Northern Virginia, it was quite a haul for her.

I am very blessed to have family and friends who are willing to drive the distance IN TRAFFIC. Recall the visits/outings with my sister -- we are talking several hundred miles. Not only is the time spent together a gift, so is the time spent driving here and then driving home.

I wish I could still drive so I could reciprocate the kindness, but I think I need more than honey at this point.

On these dates in history

2010-11-10T15:27:00.000-05:00

Monday, November 8, 4:17 AM
Monday, October 11, 5:33 PM
Wednesday, September 29, 4:59 PM

What do these dates have in common? I will spare you the scatological details, but I am getting VERY tired of this shit.

More dreamin'

2010-11-10T12:02:00.000-05:00

Last night I dreamt I was in the lobby of a big commercial office building. The floors were polished to a glossy sheen, the windows sparkled, the wheelchair ramp -- which provided access to the elevators -- curved from the left side around to the right. There were quite a few people moving about; as I made my way I realized I was walking. Looking down at my feet I discovered my lower legs and feet had been replaced by aluminum poles and thick wedges made of gray rubber. The rubber was flexible enough to simulate a heel strike and toe push, and each wedge was wide enough to provide stability. Amazed, I called to everyone to see how well I walked. A man standing nearby pointed to me and told his companion that I'd done a lot of marathons.

If only it were that easy.

No excuses

2010-11-08T17:51:00.000-05:00

There are one or two -- or more -- occasions in my life where I am guilty of not living up to my own standard. Memories of these actions reside in a dark little spot in my mind and when I think of them I am ashamed of myself; if I could go back in time I would correct my behavior.

I recently committed another thoughtless act and I am more ashamed of myself than ever before. My thoughtlessness was unintentional but that is no excuse, I erred and hurt someone I love very much.

I am so very sorry.

Mr. and Mrs. John Wallace

2010-11-08T17:05:00.000-05:00

October 27 was Becky's birthday and I was at a loss about a gift. As is the case with all my daughters, she is very particular and it is never easy to find just the right thing. Because she used to play with Barbies when she was little and because of her upcoming wedding, I decided a wedding dress Barbie would be fun and appropriate.

Becky visited two days later and we gave her the package; she opened it and laughed and told us it was perfect. She started to say something else but, when she started to cry, asked Jenny to finish for her. Jenny then told us that Becky, John Wallace, and John Wallace's father and sister were coming out to the house on Tuesday, November 2, and that Becky and John would be married.

This was a "just in case" wedding. We are very big on insurance and that's what this is. The March wedding is still on and I plan to be there.

Aren't they a lovely couple? Actual photos to be posted upon receipt.

Guess who

2010-11-08T11:01:00.000-05:00

I'm sure you remember my entry about fat ALS Bowbie. Well, here she is...

Image

No more wax and feathers...

2010-11-08T09:55:00.001-05:00

I wish this was me.
###

McGee's Marauders

2010-11-07T00:36:00.000-04:00

You couldn't have asked for a better day. Perfect weather, minimal traffic, flat course. And best of all, incredible women. We had a wonderful time maraudin'.

From Jenny

2010-11-06T23:33:00.000-04:00

Hospital bed is happy.

Not a poppy, but pleasing to the eye nonetheless

2010-11-06T23:32:00.000-04:00

I received this Christmas cactus as a gift in 2004. From 2004 until 2007, it produced an occasional flower but nothing spectacular. From May 2007 until just a few weeks ago it did not produce a single flower. When I retired in May I brought it home and put it in the serenity room; I'm embarrassed to admit I didn't pay very much attention to it. You know, out of sight, out of mind.

My little plant was watered but not regularly. Shortly after a recent watering I was surprised and happy to see little buds all over. After three years of nothing, now this!

Is this the secret to successful Christmas cactusing? Heaven knows I've never had a green thumb.

Quelques choses

2010-11-02T16:00:00.000-04:00

I love my hospital bed. Consequently, I hate my stupid chair less than before.
I am officially covered by Medicare. I don't feel any different.
Today is a very special day but I can't say why. Just trust me.
Last June I ranted about a stupid girl who parked in a handicapped space because she did not know how to parallel park. This comic reminded me of that episode:

Apologies in advance

2010-10-30T13:41:00.001-04:00

Today, after my shower, my new aide asked me if I wanted lotion and, if so, how much. I told her my preference was full coverage but not gloppy. About a half an hour later, Becky came into my room; I took her hand while we talked and she remarked that mine was very soft.

It occurred to me that, in my present condition and with the gallons of Jergens shea butter lotion applied to my skin on a regular basis, I am Buffalo Bill's dream girl.

X

2010-10-28T17:21:00.000-04:00

Ten years ago Becky was a homecoming princess and I drove her and her date to the dance. Not wanting to smell like cigarettes, I decided I would have one later.

I'll have one later. Or not.

Sweet repose and rest?

2010-10-28T16:38:00.001-04:00

Almost every morning I wake up when I hear Cecilia getting ready for school. I float in and out of a light sleep until she slams the door on her way out. Most mornings, but not this morning.

There was quite a bit of noise coming from Cecilia's bathroom and I was afraid a meltdown was in the offing. When the door shut I was convinced I heard crying, but it was hard to tell due to the racket made by the traffic outside. After a few moments I realized the crying was actually John snoring in the other room. I breathed a sigh of relief and relaxed, ready to return to dreamland. No such luck. There was now a garbage truck on the street and the smell of old garbage wafted through my open window and assaulted my olfactory sense. When Cecilia finally emerged from the bathroom I called to her to please close my window. She did, then slammed the front door and went to school.

Once again I attempted to fall asleep. No more odors, no worries about meltdowns. Peace. Until I became aware of a high pitched buzzing near my right ear. I turned my head to the right only to hear the buzzing on the left. I turned left and -- you guessed it -- the damn thing was on the right. No longer able to lift my arms to that level and terrified the buzzing thing was also a stinging thing, I rocked my head back and forth several times hoping it would go away. Either it went away or I killed it because the buzzing finally stopped.

About this time I noticed the beginnings of a cough tickling my throat, and cough I did. (I hope it was not the buzzing stinging thing!) No sooner did I finish THAT than my eyes started to sting and burn; this happens frequently with no provocation. I squinted my eyes as tight as I could but found no relief. To add insult to injury, my bladder complained that, if I was awake, it needed to be emptied. Unable to turn and see the bedside clock, I had no idea what time it was or how long I'd have to wait until Jenny arrived. Happily, I did not have to wait long. The poor dear went right into action, quickly tending to my various needs. She deserves a medal.

Loss of functionality sucks.

Math

2010-10-28T16:32:00.000-04:00

Jenny, to me, as we are eating breakfast, "This is just the right amount; we split it and I eat half." She cracks me up.

10/27/10

2010-10-27T22:56:00.002-04:00

I am composing this while all alone in the house. I don't want anyone to hear what I'm saying and I will not publish this entry until later...

I've been aware for several weeks that my swallowing is different. No, not when I drink. When I eat. This morning I choked on a tiny piece of sausage; I was not able to speak and it took several very long seconds before I could inhale. I know it scared Jenny and I did not tell her what it was that made me choke. She asked if it was saliva and I said yes. I took smaller bites after that but was conscious of several potential chokers that were not swallowed properly.

When John fed me lunch I did not choke, but I was aware of continued problematic swallowing.

I must take care.

A little night music

2010-10-27T21:30:00.000-04:00

Owl are our our our our our our our our our our The preceding is what my voice recognition software thought Stella was saying as she barked at a truck. Just thought you'd like to know.

#################

This morning, as Jenny and I ate breakfast, we listened to some lovely music from Loreena McKennitt. When Dante's Prayer came on, Jenny looked at me and said it might be a song to use for... the rest of the sentence remained unsaid. I knew what she meant and she knew I knew what she meant.

What she meant was my memorial PARTY which, since I am a control freak, I am planning in advance. I've begun collecting songs and invite any and all suggestions. One of the songs is attached for your listening pleasure.

I look forward to hearing from you!

My practical progeny

2010-10-26T17:02:00.000-04:00

Dear daughter Jenny comes by every morning to help get my day started. Most mornings she brings breakfast -- sometimes a bagel, sometimes a breakfast sandwich -- accompanied by a fruit and a cup of coffee. She patiently feeds me while she enjoys her own breakfast, and we have a lovely little chat.

If you know Jenny, you know she has a razor-sharp sense of humor and is usually five steps ahead of anyone in a conversation. Trying to eat when Jenny is "on" is very difficult; trying to talk, laugh, and eat is almost impossible. Under these circumstances I am very hard to understand, but Jenny says I'm not to worry -- she makes all her friends talk with their mouths full so she can better interpret my garbled speech.

That's my girl.

PBS

2010-10-26T10:07:00.000-04:00

I really do enjoy this comic strip.

Runday

2010-10-24T23:52:00.001-04:00

It was like old times. A beautiful October afternoon at Pratt Park; warm in the sun but quite cool in the shade. A breeze blowing in our faces and hair as we made our way around the track, talking, trying not to run each other off the course. This time, however, when we stopped it was not to tie a shoe lace or refill the water bottle, it was so Lynne or Cathy could remove a pesky bug from my face. During the walk breaks I slowed down to match their pace, otherwise I kept my wheelchair in fifth gear to try to keep up. The two of them gave me such a gift today. I will never forget it.

Next weekend -- weather permitting -- many of the women I used to run with will meet me in Colonial Beach, put me in a roadworthy wheelchair, and push me along as they run. They realize pushing me in a chair is no easy undertaking -- it's not like I'm a baby in a jogging stroller! We chose Colonial Beach because it is flat. Jannette came up with the idea early in the summer but the blistering heat prevented putting the plan into action. Fall's cooler days are much better for running, especially if you are pushing a large land m-ass in front of you.

I am blessed with good friends.

Walk to Defeat ALS 2010

2010-10-23T21:27:00.000-04:00

Many, many thanks to everyone who supported this event. You have no idea how many lives you touch with your generosity.

An alternative to the White Rabbit

2010-10-22T10:02:00.000-04:00

Little Edie Beale!

She's super freaky

2010-10-20T22:55:00.000-04:00

Hospice returns tomorrow. Stay tuned for an update.

I spent the day today at NIH at the invitation of my good friend and neurologist Justin Kwan. I haven't been to see him in a professional capacity since early last year and he wanted to do a follow-up. The usual things were tested and measured and I won't bore you with the minutiae, but I have to share one juicy little tidbit: my gastrocs are freakishly strong. Yep, how do you like that? That's exactly what Justin said. Freakishly strong. I love it, don't you?

After the exam was finished (resulting in an FRS of 13), I asked about the possibility of donating my brain and spinal cord to NIH after, well, you know, after. Justin said they would be happy to accept my donation and went over some details. I don't know if my brain will provide any enlightenment, but if it can be even a little helpful then I am happy.

A long day, and now time for nighty-night. Sweet dreams!

So lovely

2010-10-18T19:20:00.000-04:00

Thank you very much, Susana, for the beautiful orchid. You know how much I love them...

Don't ask Alice

2010-10-18T19:19:00.000-04:00

Guess who is going to be the White Rabbit for Halloween?

It's all about me

2010-10-18T19:18:00.000-04:00

Look at what I got last week! My very own (loaner) hospital bed! It is all electric--no handcrank needed to raise and lower the actual bed. The mattress is just adequate, but I was told by the nice people from hospice (who came to see me last week) that they will provide the air mattress overlay which is more comfortable.

As for hospice, they may start coming to the house as early as November. Don't go grabbing handfuls of kleenex, I'm not going anywhere yet. The nurses from my care agency suggested hospice as a supplement to meet all my comfort needs.

Aren't I just the most spoiled little thing?

Chillin' with Stella

2010-10-16T23:22:00.000-04:00