Unhappy Anniversary
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
Lucky?
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:
–
- Among the members of this club: jazzman Charles Mingus and (according to some sources) Dmitri Shostakovich, the “Beethoven of the 20th century.” [^]
- 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. [^]
- 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. [^]
- 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. [^]
- Psalms 137:5. [^]
DATE | TITLE |
12/17/2019 | Steve’s Emergency Communication To-Go |
05/12/2017 | The Eyes Have It |
08/04/2016 | YFALS National Corntoss Challenge |
07/18/2016 | Scopolamine Blues |
03/06/2016 | Dragon Me Down |
or see the Complete ALS Bites