Tomorrow is Liam’s 14th birthday. It’s also the anniversary of the day that last year, Eric made the decision to remove his ventilator. Because this year I’m hoping to focus on the former, I’m writing some words now about the latter, looking through my Facebook messages and emails with Eric from the time.
A few days earlier, the subjects of our messages were mundane (though of course we all knew things were going downhill). I’d gotten a message from him asking if we’d sent a Bite Squad gift certificate. We had, but it apparently arrived with no indication of its source. (Confidential to Bite Squad: Maybe tell recipients the name of the folks from whom they’re receiving a gift certificate!)
And then, on March 3, Eric must have posted something suggesting that the end was near, as I asked him if he was “heading into, I don’t know the right word, the final run.”
(Scrolling through Eric’s Facebook page to find what he posted, it is a hell of a challenge to get through the March 11-12 posts without just weeping.)
Aha! Found it. He posted a link to a column entitled “Death, the New Normal,” which discussed the process of getting used to death as one gets older. The column closed with Edna St. Vincent Millay’s “Dirge Without Music,” a poem I also quoted in a piece I wrote during the process and, if memory serves, in the eulogy I gave at his funeral. The poem ends, famously, with “But I do not approve. And I am not resigned.”
Deep down in the comments thread, after friends noted their own refusal to approve or be resigned, Eric wrote: “On the other hand, resignation must come, eventually.” He was ahead of the rest of us. Honestly, he’s still ahead of me; I am still pretty damn far from approving.
(As an aside, as an epidemiology dork, I love that the fact that the previous post from him was a link to a story about a psychology journal banning the use of p-values.)
Anyway, so, I wrote to him on the 3rd asking if I was reading his post correctly. He agreed that he did feel he was getting through the end: “I’m so tired all the time and I sleep a ton. My only desire is to stay connected until the time comes.” And: “I’m thinking of working with hospice on stopping the vent, a matter of weeks. All I need from you is to stay connected.”
I asked about the alternative to removing the ventilator; he responded: “The alternative is to sleep more and more as things progress. It seems I could shorten that and be more aware when I pass.” In response to my question about whether awareness was a goal: “Since I want to stay connected to everyone I want to stay aware rather than fade away, although fading away may be more peaceful.”
My response: “I can see how having some measure of control could be appealing and a way to make it your process rather than the disease’s or a machine’s, if that makes sense. It also must be difficult to plan your own end, though once you’ve accepted it I assume it is easier.”
Eric responded without dancing around it: “Picking a day is really freaky. I’m still looking for some wide advice from hospice.” I said I hoped they had some wise advice, since I sure didn’t. His arms were tiring out, he wrote, but he said he wished he could have a time frame so he could plan. Without any firm predictions, he made his own plan and chose a date (March 12). A few days later, we talked about the process; he was frustrated that there were still details to be set up (I learned later that the IV provider was hesitant to let the doctor prescribe IV pain meds, fearing it was too close to assisted suicide, so they ended up with patches, I believe). “Once all of that is set, it will go better,” he wrote.
Then the day before, we messaged some more about logistics, and I sent him a photo of the setup that our friend Paul Hagstrom set up for digitizing some old Battle of the Band videotapes; he was glad his kids would see it eventually. He wrote me after he got back from getting the IV line done: “I got to experience some spring like weather on the way [home], which was nice. See you tomorrow.”
Around the same time, my mom was sending him daily—lovely—emails, with stories about me, about grandkids, about goats—about what Eric called “regular things.”
Her, on March 10: “I have no words of wisdom. I will just observe that you are living until you die, as you intended, and I admire you immensely. You are teaching again.” Eric responded: “It’s funny, I think a lot about my maternal grandmother lately, who had a long slow death from cancer. I have a funny feeling she’s helping me get through this. She handled her death with a lot of grace.”
He continued: “I don’t need words of wisdom, I just like hearing from people. My days are full of sleep. Let’s hope tonight is too. We talked to the girls about the fact that my vent won’t last much longer and we grieved together. I’m getting a large IV at the hospital tomorrow because the nurse couldn’t do it at home, but then I’ll be coming back home. That’s how they will administer the sedatives on Thursday. I feel 90% peaceful about it, and 10% nervous, which I think is reasonable.”
Actually, you know, another quote from my mom’s emails feels about right—something I’d forgotten until going back through my emails tonight. She told him a story about a conversation she and I had when I took a semester off to work on Paul Wellstone’s first Senate campaign, and finished it: “You know that your girls are going to be remembering what you taught them. They may not be dropping out of college to work on somebody’s Senate campaign, but the things they have learned, and are learning, from you are settled into their bones, and will serve them well.”
She was right. A couple of days later, Eric died, on as close to his own terms as could be achieved with ALS, teaching all of us around him until the end. And staying connected to everyone. I’ve written about it before, but the extended periods of eye contact he made—with every single person in the room, and, I firmly believe, with so many more people by extension—made it so Eric fulfilled his fundamental goal:
“I want to stay connected to everyone.”
Still miss the hell out of him.