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Feb 28, 2019

Unhappy Anniversary

I'd really rather have a cheeseburger.Two weeks ago, on February 15, I celebrated marked the eighth anniversary of my official ALS diagnosis. It was on the day after Valentine’s Day 2011 that my neurologist confirmed what I had known for more than a year. I had inadvertently joined an exclusive club.[1]

Now eight years later I am still paying dues. I am lucky, I know, but it doesn’t always feel that way. Virtually every PALS (Person with ALS) I have “met”[2] has died by now.

It is almost a mantra among PALS to not dwell on what ALS has taken from us, but to instead treasure what it has not. I have almost always managed to do this, especially in public. But today I will indulge in a bit of self pity. Publicly, no less.

In the debit column

  • • I haven’t walked in four or five years. I don’t run either.
     
  • • Both of my arms and hands are nearly worthless. By having my right hand placed on my wheelchair’s joystick[3] and by using my shoulder to push and pull my arm and my knee to assist on right turns, I am just able to drive my wheelchair–maniacally at times. I have lost track of how long my arms have been Venus-de-Milo’d, but it has been four or five years. Yet I am still surprised some days when I look at my hands, use my mind to send a “move a finger” command and absolutely nothing happens. It’s oddly surreal.
     
  • • I haven’t had a bite to eat in almost two-and-a-half years. I had a feeding tube port placed on August 1, 2016 and stopped trying to take food by mouth almost immediately. I remember trying a couple of times that month to eat mashed potatoes and tomato soup (not at the same time). It didn’t seem to be worth the trouble, and I stopped trying.
     
    I still on occasion take a sip of flavored water or Lipton’s citrus green tea drink. Generally I do this once a day at bedtime to wet my (unable-to-)whistle. I get maybe a teaspoon of the drink down my gullet and a tablespoon of it on my shirt.
     
    I am no “breatharian[4]. I consume six cartons of unflavored Isosource or Nutren a day. Mmm! It is a good thing I have always been an eat-to-live rather than live-to-eat kind of guy. Every now and then, however, I crave a big, juicy, artery-clogging, ozone-destroying cheeseburger.
     
  • • Speaking of breaths, mine are getting more difficult to come by. I wear a BiPAP (bidirectional positive airway pressure) mask at night and, increasingly, during the day to give my weakened diaphragm a rest. Eventually I will need it 24/7, which is when I will tell my hospice team to initiate our endgame plan. I am in no hurry, really, but I will be ready when the time comes, be it next month or next year.
     
  • • I drool like a baby. Botox injections into my perotid glands have helped. The injections done on January 15th have noticeably reduced my output, but are starting to wear off. I will get a second round on March 15th. It will be a larger dose this time (as I tolerated the first so well), and I hope this will be even more effective and longer-lasting. Drool isn’t cool.
     
  • • I am developing a case of “limberneck.” This is not funny in chickens and even less so in PALS.
     
  • • Unquestionably the most difficult loss of all has been the loss of my ability to speak. It’s bad enough in and of itself, but it is the sadness I see in the eyes of my wife and daughters (and others) that really hurts. Until quite recently I had the ability to grunt out short sentences that those closest to me could mostly understand. Not so now: this ability fell prey to my lack of wind and a tongue that–like the Babylonian-exiled musician’s hand–has lost its cunning.[5]
     
    This loss–one of the dues payable at some point by nearly all PALS who are lucky(?) enough to live as long as I have as a member of this club–has made it difficult to enjoy friends and social situations as before. A loss indeed.
     

 

Lucky?

Lucky dog.Now that is a list of complaints! At least I haven’t been castrated.

This is where I had intended to enumerate an impressive list of counter-balancing reasons to feel lucky. There are many. But I will leave that for an “all ducks and bunnies” post on another day. Briefly I will say:

• I’ve already mentioned my longevity. According to ALS Association, only 20% of PALS survive as long as five years post-diagnosis; only 10% make ten years. My eight years have been filled with joy, despite the obvious challenges we have faced. In some profound ways they have been among the best years of my life! Back on February 15, 2011 I wouldn’t have believed that possible.

• I live in the United States, which–bar none–is the worst developed country in world in which to face this disease. Bankruptcy is often inevitable; surviving family members and spouses are left in greatly-reduced circumstances even after years of making due without needed resources. Yet, as ALS is a “presumed [to be] service-related condition,” my military service qualifies us for all of the resources we need. This truly remarkable and humbling support has literally saved my life. Without it I would not have lived this long, nor wanted to.

• Last, and most important, I am beyond fortunate to have the love and care of my family to lean on. All of my family, but first my wife Joann: an Earth angel (the best kind). To say enough about her would fill the blog post equivalent of the unabridged O.E.D. My daughters Nicole and Tamara have wings as well. I am so happy to have them living (with my extraordinary sons-in-law) close at hand here in the Twin Cities and even closer here in my heart.

Hope?

What about hope, what Emily Dickinson called “the thing with feathers / that perches in the soul”? What is it that fills me with hope for the future? These two:

Meadow and Haaken: Hope, perched in my soul.


–

Notes

  1. Among the members of this club: jazzman Charles Mingus and (according to some sources) Dmitri Shostakovich, the “Beethoven of the 20th century.” [^]
  2. I put “met” in quotes because I knew these PALS only online. Rob Tison, aka “Persevering” I’ve written about. Elizabeth Sweeting, aka “Tishbet” and I considered each other doppelgangers because of our eerily similar onset of the disease and pattern of progression. Until things changed. (We were each enrolled in the dexpramipexole trial, which ultimately failed. The unblinding at the conclusion of the trial revealed that I had received the drug and she got the placebo. Hmm.) Just this past year, one of the great PALS, Roch Maher, aka “Tommy Maker” passed after nine years with what he in London called “motor neurone disease.” There are so many others. [^]
  3. I’d have to have someone place my hand on my “joystick” too, but what would be the point? I can’t even pee without assistance. [^]
  4. I remember seeing an interview on local news with a supposed “breatharian” when I was younger (1970s, I think). If he’s still alive, he’s probably serving in Trump’s cabinet. [^]
  5. Psalms 137:5. [^]

 

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February 28, 2019 · From ALS Bites

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