THE ODDS (Debbie Does ALS)



The oven blasts at 500°; when the door opens the heat almost suffocates me with its intensity.  My back, leaning against the chair, suffers the most because it is not exposed to the air. I sit, motionless, trying to wait out my internal furnace when I become aware of an itch on my back, near the seam of my sports bra. Cautiously, I move very slightly from side to side, not scratching exactly but moving enough to provide some relief. But. Then. Another itch flares its ugly nostrils; this one -- itchier than the one on my back -- penetrates the outside of my right shoulder, completely unreachable. I think to myself I will surely go mad but for the fact that I know all this will pass. Eventually. The time spent waiting for it to pass, however, creeps by so slowly I don't know how I will make it.

It's five o'clock in the morning. The tiniest of rattles sounds in my chest. My eyes closed, I manage  a feeble cough, but it's not enough. The rattle reappears but this time I cannot cough; I seem to have forgotten how to do it on command. I try -- unsuccessfully -- to clear my throat, worrying all the time that the  horrible, sick, old-person-hacking sounds I make will somehow find their way into Cecilia's dreams, turning them into nightmares. Finally I have a productive moment (eww, gross, this makes my stomach  unhappy) but I can't move the damn blob far enough; my swallow mechanism goes into action and the damn blob goes right back where it came from and we are back at square one.  I continue this way for about an hour and a half and then give up trying to sleep. I elevate my stupid chair (oh yes, I was sleeping in my stupid chair) and notice the rattle is gone. I close my eyes and am near sleep when...

The tickling feeling I've come to hate -- and fear -- starts its evil buzzing in the back of my throat. I cough a couple times, then yawn the yawniest of yawns (so yawny I feel I might dislocate my jaw), then my nose runs and my eyes water. When my eyes water they sting SO BADLY; nothing helps except to have them wiped with a damp cloth. Everyone else is asleep so I clench my eyes and pray for the stinging to go away.

 The next few hours are spent enduring more tickling and coughing and yawning and furnace blasts.

In response to a weekend call, the plumbers arrive after breakfast to look at our well, pump, and tank. Water on, water off, back and forth. I wait as long as I can and finally am granted leave to go (I don't need to tell you where). Naturally I take full advantage of the opportunity but, when I am finished and am ready to push my happy, cleansing buttons, I am told to wait because the plumbers  have turned off the water again. I sit and wait, not long but long enough for my feet to begin swelling. Groan. At long last the water is turned on and I tidy things up and go back to my stupid chair.

So, the well. A new tank was needed (plunk). A new pump was needed (plunk plunk). The well is dry (plunk plunk plunk plunk) so the new pump was removed (-plunk -plunk). Temporary solution: connect to the neighbor's water (they are connected to county water).  Short-term solution: have the well filled by a local company that fills swimming pools (mini-plunk). Long-term solution: connect to the county water (plunk plunk plunk plunk plunk plunk plunk.....).

Not one of my better days. I hate ALS, I hate these stupid hot flashes, and I hate having to spend huge gobs of money I don't have.

1 comment:

Wendy Leah said...

I hope you are able to have a very deep, wonderful sleep tonight my dear 'ster. Get the county water, it will pay for itself over time.

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