Shock paralysis, while impersonating a functioning human being in the world
After months of experiencing subtle speech changes, yet still being able to do a pistol squat at CrossFit, Mike got the diagnosis of bulbar ALS. It was confirmed a month later at the University of Washington ALS Center. There was no place to hide from the reality. Temporary reprieve was available via evening IPA’s and ‘deck time’, which is Hampton code for smoking pot en plein aire, on our deck.
A scary diagnosis represents a world-shifting personal crisis that makes time stand still.
We told our best friends over a beer. It was horrible, and gut wrenching. In my life, usually I felt better after sharing tough news and getting support from people I trust and love. When the news is like this, the darkness and fear is still there even after you share it. There is no bright side, only choices on how to live when the end of life, and daily reminders of its progressive approach through physical changes, have announced its arrival in a definitive manner.
Then we told our kids at the same time: simultaneously over the phone on the East Coast, and in person on the West, we sat together in a pivotal moment that altered their historic understanding of the future of our family. They had to know, and knowing would permanently change their lives. Mike shared he did not have the hereditary kind of ALS; an enormous relief in the middle of the ALS nuclear bomb.
We all have the opportunity to choose the size and scope of the audience who hears information about our lives. Mike and I chose a select few, and the rest either figured it out, or found out. Mike shared with his supervisor, and as Director of Rehab at our local hospital, the team figured it out. Word spread, people whispered and wondered, and because it was not public news, we didn’t received outreach or support from the growing number of people who learned this deeply personal news about Mike and our family. I understand how gossip like this can spread, impersonating compassion, while also persisting our isolation while spreading our personal information to people we didn’t even know. Perhaps energetically we were surrounded by a bubble of care. I want to change my thinking to accept that as true. Perhaps one day I will truly believe it.
We are connected creatures with a web of stories and experiences with others. Experiencing “I’m so sorry to hear”’s outreach from 3 individuals who had been publicly cruel to me was disturbing. Their outreach resulted in recurrent flashbacks from a life-changing incident that occurred only 18 months before Mike’s first symptoms surfaced. Short of completing ignoring someone, kindness in the face of tragedy is the lightest lift of all available gestures. It does not erase previous damage inflicted by that person - in fact, it left the cruelty flapping in the breeze like a sheet on a clothesline, passively flapping in the wind and weather of my mind. Amputating ongoing conversation from these unpredictable forces was the best survival strategy. Despite their outreach being masked like the wolf in Grandma’s bonnet, they had not seen me as a human being during the incident. As such, all doors had to be closed tight and locked to prevent the risk of further injury.
I chose to tell people at work, because I was clearly altered. I had to take a sabbatical from client care, because the muscles that solved client puzzles were on call 24/7/365 to dedicate effort towards everything Mike needed. Our house was on fire, and would be for awhile. Focusing on our people and the business were a good match for what I had to offer. As a business owner, I am human collateral for its existence, and responsible for creating a place worth choosing to work. One thing I could do was find talent, and align it with opportunity. I am grateful that a number of exceptionally talented, good hearted and wickedly smart individuals were drawn to the company at the time we envisioned mirror energy for them.
The framework that worked well for me during Mike’s illness was as follows:
Perform strategic work with long deadlines, enabling off stage, focused, goal related work that could occur at all hours. This allowed for variables including Mike’s appointments, the frequent pivots we had to do as his function changed, grief squalls, and the emotional load, and incredible gift, of caring for your person who has a life ending disease.
I told the people with whom I worked the most closely. I emphasized that nothing is to be withheld during this chapter, that I should be held to the same standards, and that my level of organization risked being variable. I needed their help to bring unclosed circles to my attention, because being a trusted thought partner and colleague is deeply important to me, and also is my responsibility.
I told the entire team, and gave them guidance on how to interact with me as a person who is experiencing a known challenge. I requested no one looked at me with a pained face, asking, “How ARE you?” Although indended to be caring, it would disrupt my day and focus, and was not at all helpful. They complied, and I appreciated it.
My goal was to sleep, drink water, eat well, and go for walks. We planned for the future, and also carpe’d all the diems, savoring simple moments in between major shifts in function, need and solution.
We called Mike’s mobile chapter “Adventure Time”, and took our sadness and joy and fear on trips to beautiful places. I imagined us walking down the street with Joy, Fear and the Grim Reaper, flying above us like a Dementor. “Come on guys, let’s go,” we said. And we went to Tofino, BC, RV trips to Yosemite, explorations to Portugal and Bath, Alaska and Lopez Island.
We cried. A LOT. So much so that the tears just moved through us like earth-changing weather. We didn’t fight it. As Mike’s swallow and secretions became more of a heavy workflow to breathe easier, tears were always followed by cough-assist and the need to clear his lungs. There was no way around the deepest sadness and grief, as well as the tears and the clean up after so he could breathe easier again. God damn it was hard work for him. Like he needed another hard thing. Fucking ALS is such a nasty mother fucker.
We listened to music. We held each other. We spent a lot of time together. Mike was insistent that the kids did not put their professional pursuits and lives on hold. So they found ways to remain connected with us, as well as their individual paths. Davis was given a miraculous 6 months, re-stationed from his work, to help care for Mike. Finny came back from school on the weekends, cared for Mike during the summers. Both kids brought their music and humor and presence, which at times felt like adult summer camp. Seriously, when do any parents have the opportunity to spend this much time with their adult, 20-something kids?! It was beautiful in so many ways.
We figured out the size of group that worked for us, which ended up being 4 or less. This enabled the spaciousness of airtime for Mike to participate in conversation, which included everyone in the room. Side conversations are normal and fair: and when someone is communicating through text to speech, there must be time to craft the message to participate real-time in the conversation.
While I cared for myself in simple ways, I also let go of historic aesthetic expectations for myself. Imagine your partner melting before your eyes, week after week, from ALS. And in my mind, I could not possibly whine about becoming chubby. A good amount of my hair fell out, I aged, my blood pressure went up, I had palpitations and panic attacks, and my goal was to avoid a major health event. We just held onto each other and the mast during the storm, because staying afloat was the win.
And we drank beautiful, delicious wine, champagne, Aperol Spritzes, IPA’s and pilsners. Mike smoked the perfect dosage of pot in the evenings and then transitioned to edibles, which relaxed his fasciculations and mind, enabling islands of buzzy, zen peace to recharge and pause future-tripping. We did a private psilocybin Ceremony to set our intentions for the future we had left together. Mike’s intention was to find his voice, and share things that were important to him, asking for what he needed and wanted. A go-with-the-flow kind of guy, he had existed through distance when he ached for a larger dose of time with special people in his life. He very gently leaned into a couple things he would have previously let go, talking about things that were important to him even in the face of, at times, reactive resistance. He asked for more, and he asked for what he wanted and needed from his most precious people; doing so in the most loving and invitational way. My intention was to rid myself from things that did not serve me well so I could focus on Mike, our family and identified, important legacies of our life.