THE ODDS (Debbie Does ALS)


Another Saturday Night

When I came home Friday night and went into my bedroom, I was unable to turn on my lamp. I haven't been able to use my fingers for some time, the workaround here was grasping the switch between my knuckles. The last couple weeks, however, I had noticed it was becoming more difficult even to do that, and last night my knuckle grasping came to an end. So today it was off to Target for a new set of touch lamps. Happily, I found a nice pair with a clean, minimalist appearance which are already in place and are a delight to turn on and off. Problem solved.

Last night I had an interesting dream; the first in which I had ALS. I don't remember the whole thing but I do recall going into a circular closet that had many doors, each one was fitted with knobs I was unable to pull, I was looking for somewhere to hang up my clothes which included a skirt that had a torn hem. Putting the clothes on a hanger was impossible and my frustration was compounded when I was not able to find a rod low enough for my reach. Suzanne, the Accounting Manager from the office, found me wandering around in circles and helped me. We came upon a man in a suit who had just purchased a very unique cabinet; it was low to the ground and had a look in the style of Frank Lloyd Wright. The cabinet was a deep, rich lapis color, with fine, crimson striations on the surface. Interestingly, the cabinet exactly matched the man's suit. That's all I remember.

Today was family support group day. Everyone pitched in with food preparation and cleaning. Ellen arrived promptly at noon and down to the serenity room we went. I'm not going to go into any great detail but I do believe the open forum was beneficial and gave everyone an opportunity to share how they are feeling. Ellen made some very helpful suggestions, particularly the creation of a schedule to help define who is doing what, when, and where, to help evenly distribute the burden. Looking ahead, she offered some suggestions about my care that I will ponder. One option I will look into is creating a "share the care" team. This may be a very realistic solution when my needs become greater than they are today. I have incredibly good people in my life who have expressed their willingness to help -- this may be one way. It's a bitter pill for me and I hate, hate, hate that I will have to call upon anyone to help me in any way, but it is what it is. As I wrote to a dear friend only yesterday, "I know I should graciously accept -- and even seek -- the help my friends and family are so willing to give, but I will confess to a certain reluctance in this regard. The more I require assistance, the more I hate that assistance is required. A vicious circle."

Oh, my cherished independence, how I miss you.

If it is not raining tomorrow I am meeting my friend Cathy at the park for a walk. Please keep your fingers crossed for a dry morning!

I think that's enough for now. Sweet dreams.

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