(Note: If you’re new to The Owl Journal, you might be wondering what all this ‘owl’ business is about. Well, all can be revealed by reading my memoir, I, Too, Heard The Owl, available elsewhere on this site for free.)
On July 6, 2020, the doctor said it would be approximately six months; a pronouncement that, though lacking certainty and specificity, nevertheless meant I therefore qualified for hospice services, and I was now legally able to exercise my right to Death With Dignity according to Washington State law.
Having been diagnosed with ALS two years prior — accompanied by a prognosis of 2-5 years life expectancy — I was spared devastating surprise at the approximately six months determination, and yet I did experience a kind of devastating jolt of urgency concerning end-of-life logistics. That my death would require as much logistical planning as it would is something I’d found alternately deeply strange or thoroughly annoying. It was something I pondered rigorously, and one day I did some googling and wrote the following in my journal:
To Everything A Season, A Time To Every Purpose
A Time To Be Born: 32% of all U.S. births occur via Cesarean Section, a surgical method that often results in scheduling the actual day and time a baby will be born.
A Time To Die: It is only legal in nine U.S. states and D.C. for people suffering from late-stage terminal illnesses to end their own lives with the assistance of a physician, thereby scheduling the actual day/time of their own deaths.
Question: How will I find the time to see all the people I want to see, write everything I want to write, read all the books I want to read, listen to all the music I want to listen to, eat all the pizza I want to eat, visit all of my favorite Bellingham spots I want to visit (weather allowing), etc…ONE LAST TIME?!
Answer: Flail around and just do everything you want to do, if and when you can do it, because there are days when it’s hard enough simply getting out of bed in the morning.
I’ve been deeply moved, nearly continuously, by the extensive network of family and friends in my life, a gracious community of people who, upon learning of my diagnosis, enveloped me in an embrace of love and support. Consequently, I felt a solemn sense of responsibility to report this approximately six months declaration to my people as the first logistical to-do item on my list, being sure to include, if not necessarily emphasize, the ‘approximately‘ qualifier.
Then, the six months lapsed.
Then, it was seven.
And with the passing of each subsequent approximate month, I could NOT stop thinking of that damned fable of Aesop’s, The Boy Who Cried Wolf, wondering just how many of my family and friends were starting to suspect that they’d been had.
After all, nearly everyone who has seen me recently, in person or via video chat, has said during the visit, with unquestionably kind intentions, some variation or another on this theme:
“You look SO great, Howard!”
And yet, it’s been painfully easy for me to read between the lines, to decipher the totality of what folks are really thinking:
“You look SO great! How can it possibly be that you are so close to death? The doctor must have gotten it horribly wrong! You still have SO much life in you!”
Way back in November, I referred to ALS as an “Iceberg Disease,” utilizing the proverbial metaphor to explain how deceptive it can be.
No, you can’t really be blamed for thinking there wasn’t much terribly wrong with me, if I sit before you in my armchair, in long sleeves and long pants (thus hiding my bony, emaciated arms, torso, and legs), if I am at least fairly well-rested and recently bathed and dressed in a fresh change of clothes (that is, bathed and dressed by someone other than you), if, during the visit, I don’t try to eat (barely able to use a fork or spoon, barely able to pick up finger food and transport it to my mouth), and especially if, while you’re here, I don’t have to get up, transfer to my wheelchair, and go to the bathroom. Except for some occasional subtle signs of labored breathing should I try to speak continuously for longer than I’m comfortably able to (after all, I am suchahoward! 🤪), I usually have about a couple of hours of nearly-normal conversation in me.
Yeah, that tip of the iceberg — that stunning, jagged blue-white apex peaking up from the surface of the water — sure looks pretty when the fullness of reality is obscured in the depths below.
These are some of the subtle ways that ALS kicks your ass. You start outliving your prognosis, seemingly a REALLY good thing, but:
- you are an iceberg
- you feel weird about still being alive after having announced, however approximately, that you’d be gone in six months
- you are unable to fully celebrate the bonus time you’re getting because you remain unable to engage in the physical activities that had previously made you feel alive
- you worry that when your loved ones read this and learn that you feel this way they’ll be hurt that your time visiting with them apparently isn’t quite enough to compensate for your daily suffering
- in your effort to make sense of all of this, and to have any chance at all of achieving a state of acceptance, you find yourself recycling themes in your writing that you’ve already explored, veering off dangerously into pity party territory
So, now what?
Will it be eleven months? Twelve? Perhaps a baker’s dozen?
That would be over 100% more Howard than originally anticipated!
That’s a good thing, right?!
Sadly, sorry to say, I have no freaking idea how much longer I’ll be around, nor am I clear as to whether or not longer is indeed better. It’s deeply confusing — a painful kind of confusion — here in this limbo state between life and death.
Therefore, I’ll simply conclude this post with two anecdotes that, however abstractly, pretty much sum up my current status.
About a month ago I had a visit from a friend who is the fulltime caregiver for someone with advanced Multiple Sclerosis (MS). This someone is completely physically disabled by the disease, therefore completely dependent on caregivers to feed, bathe, go to the bathroom, etc. Like me, this someone was a musician, I was lucky enough to have seen her perform a number of times back in the ’90s, and her performances were like joyous eruptions of love and life energy.
When I think of the degenerative trajectory of my ALS, I think of this someone, and all people with disabilities, who, despite all of the terrible loss and ongoing hardship, choose to go on living; who either formally or informally assess the pros & cons I wrote about last July, and continue to determine that the pros outweigh the cons; and I think myself weak for already feeling, from time to time, that it’s too difficult to carry on. Yes, ALS is terminal and MS and other disabilities are not, but until the very end of the ALS progression, when the ability to breathe is lost, ALS closely resembles other disabling conditions.
“How does she do it?” I asked my friend. “How does she continue to decide, day in and day out, to go on living this way?”
“I don’t know. She’s a force of nature.” my friend replied. “But, I’ve kept her up to date as to how you are doing, and I asked her recently if she had any words of advice for you, and she replied simply, Just tell Howard that he can live as long as he wants to.“
Several days later, another friend came for a visit, I told him about Anecdote #1, and he said, “You worry about seeming weak because you sometimes find your suffering unbearable, and yet the alternative, facing death and choosing to cross over into the great mystery, takes enormous strength and courage?!”