Hero? Yes, Hero.

In the Spring of 2020, David took the ferry home from Amazon, not knowing it would be for the last time. Because COVID forced him to work from home, I heard him cough. Then I heard him cough again. And again. Except it wasn’t really a cough; it was more like a choke. Taking too big a swallow of his Diet Coke, I thought. He went to the doctor to address the “cough” and it was labeled allergies. Yeah . . . no. I remember that one day in April, though he was supposed to be working, we went for a paddle, putting our kayaks in the water just outside our front door. He was fine.

Then came summertime and with it the vocal slurring. Irritated, I accused him of drinking too much and urged him to cut back a bit. More often than not, he swore he hadn’t been and I responded with side-eye. By the end of summer, with a visit from Valerie and Lola, we all rented a cabin in the Hoh Rainforest, and without escape, they heard his voice too. By the end of that weekend I gave an ultimatum: Get to the doctor or else. I have no idea what the “or else” could have meant.

Late Winter of 2021 he was having surgery, tests, seeing a neurologist and mid-March we had the diagnosis: ALS. The guy said, “Just so you know, there’s no beating this.” We walked out in silence. By May he was seeing a specialist in Seattle, losing his voice, losing functionality in his hands, and by summer he was becoming a regular at the VA.

Here we are, two years in: No voice, no mobility, constant fight with the muscle wasting and mucus, but yes to life.

Just hours ago, we returned from his appointment with the wondrous Sam Adams, Occupational Therapist extraordinaire. (Sam, if you’re reading this, you should know that the morning was really difficult and I wasn’t sure I wasn’t going to end up crying throughout his appointment. But as it always happens when we see you, you took my mind off things and let me focus on the task at hand. For that, I am indebted to you beyond measure.)

Our task today was to get software installed on David’s Tobii device (remember that this is the computer he uses to communicate via eye-scan) enabling him to then drive his power chair with his eyes. He’s been surpassing all expectation in terms of how fast he is and how long he can keep focused, such that everyone thought he’d do really well with this new program that conjoined Tobii with power chair. They weren’t wrong. As you can see here, it was only seconds after the upload that he was driving his chair. I can’t remember how long I’ve been doing it for him, but I want to say it’s been since before the house remodel, so this really returns to him a sense of autonomy.

I’m thrilled for him, truly. I had my doubts. I doubted that he’d be up for the focus he’d need because lately he’s been struggling to even hold up his head. I doubted that he’d have the energy to concentrate, but he’s completed his book proposal on Tobii (and someday I’ll write about how intense that really is), so why shouldn’t he also do this? Why did I doubt him? Maybe it’s a sense of protection. Or maybe I have a letter off in that word. Maybe it’s because it’s a projection. It’s not him I’m doubting, it’s myself, which I’ll return to.

Before I do, however, let me just tell you about a few developments. First, we finally got a helper. Richard visits three times a week, which allows me to go out for groceries, run errands, or even take a hike. Not that I have taken a hike, but I could. Mostly I’ve been buying flowers. With the turn in the weather, I’ve created an oasis under and around our pergola, right in David’s line of sight!

Anyway, it was the end of March when he decided it was better that he abandon his easy chair and move into our bedroom full time, using the air mattress that would provide better support for his skin and circulation. But can you imagine? Inside in the same room while the world outside warms up, turns green and revolves around you. Planting all of these flowers meant that a pair of chickadees chose our hanging fuscia in which to build their nest. We got a bird’s eye view of the fledgling: literally!

I was also approved for the Caregiver’s Support Program, which required some training (laughable), and an exam (also laughable. I scored 100%. But this program provides a stipend, literally a pay check for my care of him. It’ll help pay off quickly the loan we took out to get a new roof on the Carriage House and new gutters for the main house. Yay!

And so right now, David’s primary struggles are with his neck and, as his docs call them, the secretions. He’s lost a lot of strength and you know how heavy David’s brain is! Haha!! Seriously, it can get painful and stiff and so I’ve had to hack some solutions while we await a special brace for his torso and neck.

So, back to that doubt I was speaking of . . .

One of the reasons I fell in love with David almost a decade ago is because of his tenacity; his unwillingness to let go of vitality and drive. He never lets fear or uncertainty or not-knowing stop him from trying something new. Even the facing of his own death. That neurologist was right: right now, there’s no beating ALS. David’s life will be cut short, and the day will come when I will walk into our home and it will be empty of him. And I loathe that day with every fiber of my being. But I write this out so bluntly because it’s a way for me to begin to face and understand what I’ve not wanted to. David will die, and I will witness this inconceivable event.

David is my hero now, and on that day as well. In a world where I find that word over-used to a sickening degree, I use it deliberately with him. He tolerates, he endures. He creates. He models these traits that I will need in spades. But the way that I’ve written that sentence there . . . it’s as if I believe I don’t already possess them, that I must develop them.

And so here’s the thing. These two years have been terrifying, and I have never been more exhausted than I am right now. Have never cried as much in the whole of my life than in these two years. Caregiving is the most difficult thing – certainly the most difficult thing I’ve ever done. And I would be a fraud if I didn’t admit that there are times when I fear I can’t do one more thing. It’s just not easy.

Every day is a new and different day; you have to befriend change, welcome it, anticipate it, accept it. You may take one small accomplishment from the day before and have to apply it to a brand new scenario. You have to come to grip with the body and all of its beautiful and messy functioning. Long ago, I chose to not have children, doing so because I honestly believed I was innately too selfish to care for another human being – particularly one that couldn’t speak or move autonomously. I’m not saying David is a child, nor that I am his mother, but there is a commonality between the love for a child and the love I have for David and the degree of care that’s needed and that I provide regardless of fear or fatigue.

Yes, two years in.

David is my hero, and while this care is the least he deserves, he’s teaching me to become a hero to myself, to embrace gifts given, to wonder at the hills and not run from (or more likely in my case, hide within) the valleys. There will undoubtedly be more bad days, days when I feel I cannot do one more thing for him, days when I will even be angry at him for having this disease (though there will never be a day when I don’t also love him), but damn, how fortunate we are for these years. Without them, it would be no life lived at all.