THE ODDS (Debbie Does ALS)


The daily double

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.


Out of the mouths of babes

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

-JM, to her mom



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

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

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.)



A series of uncomfortable events

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.



Fun with Dick and Jane

Thank you, Kenny and JR for my tasty treats.


Knight of the round tissue.

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.



Spit or Swallow?

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.



I'm back

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

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.

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.)

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