Waiting for the End
today at 9:28 am
I have, over the last fourteen years, had many feelings about Mike’s inevitable death. Terror, anger, confusion, grief… What I never expected was to spend his last weeks overcome with gratitude.
I have lost count of the things I am grateful for, and all of them come down to what I know about glioblastoma and brain injuries and strokes. They all come down to what I feared about these inevitabilities, and how they would affect the man I love, and our family. This gratitude only manages to express itself in list form, a grim diyenu of worst-case, or even worse-case scenarios.
At no point did Mike’s brain cancer change his personality. At no point did it cause him debilitating seizures. At no point did it cause him blindness or aphasia, or deafness. Mike spent almost fourteen years with tumors in his brain, and they caused him weakness in his left leg. Mike spent almost fourteen years with tumors in his brain, and it was a stroke that took the use of his left hand, his non-dominant hand, that caused him the most grief.
It’s been more than fourteen years since the first time he mentioned brain cancer symptoms to me. It was October or November 2006, it was starting to get cold, and his nightly jogs were becoming a minor struggle as one leg didn’t move the way he expected it to.
“You need to see a doctor, that sounds neurological,” I said. He brushed me off. Healthy 24yo athletes don’t have neurological problems. Besides, just because my doctors had put me through the wringer a few times looking for brain tumors didn’t mean EVERYONE had to go looking for them. I was young, 22, and I didn’t push.
Six months later the softball season was starting, and he found himself struggling when running bases. This time, I pushed. This time, he went to the doctor. And his doctor also told him he was fine. He needed to stretch better. He was so strong. He was so healthy. I let it go.
I’m grateful for that, too. If that doctor hadn’t dismissed him, he would have been stuck getting treatment from his HMO and not the incredible team who DID find his cancer and gave him so many years. He would have started treatment before we were engaged and he might never have asked. I might not have had the chance to be his advocate, something he credits with his survival and though I credit myself less, it did teach me 90% of my organizational skills.
We wouldn’t have had our life if he’d found his tumors sooner, or differently. We wouldn’t have our children. Our happiness. And through all of it, he has made it look easy. Until 2019.
There are so many small griefs I’m grateful for. My husband, the love of my life, the best human I have ever known, has eased me into my grief in ways I am only beginning to see. After seven months of him sleeping in a hospital bed (with intermittent months of him sleeping in a hospital), I am already getting used to being in our bed alone. I am already used to not being able to ask him to help me put things on tall shelves or change lightbulbs or get rid of spiders. I am already used to being the bedtime parent, and the morning parent, and the parent who has to troubleshoot technical problems with devices and wifi and whatnot. I haven’t had sex with my husband since March, nearly a year, and while I’m full of grief over this as well, it’s another thing that is not new. After his stroke, I made myself seriously ill from lack of minimal self-care, and I’ve spent the last year learning my own husbandry.
So many of the small comforts of our life together have slipped away from me while he is still here, so there will be fewer things to mourn beyond his physical presence, his love, his person in my life. “This is a kindness,” I tell myself extemporaneously, daily, sometimes hourly, and I am grateful for it.
When from one day to the next so much is different, when one day he could stand to move to the wheelchair and the next he couldn’t, and the next he couldn’t remain sitting more than an hour, and the next he stayed in bed, I am grateful that things are moving so quickly. A man ready to die after fourteen years of constant awareness of oncoming oblivion deserves to choose his time. When he began to spend more and more hours each day asleep, I was grateful. The sleep is part of death, and the sleep spares him from so much of the anguish in the house. When he stopped being able to swallow his pills but did not start suffering sudden, violent seizures, I was grateful. When he couldn’t speak all day, but then looked at me and croaked, “I love you,” three times, I was grateful. When he watched the kids watch Fantasia, too weak to speak but happy to see his children at his side, I was grateful.
I’m less grateful now, now that I know how close we have to be. Now that his breaths are so shallow and his lungs so full of fluid, now that his kidneys are shutting down and he is so often in pain when he’s awake. We are almost at the end and part of me wishes there was so much more. Another fourteen years. Another two.
Just one more anniversary.
Just Valentine’s Day.
Just watching the inauguration of a president who wants people like Mike to have the kind of care the ACA gave us. Just long enough to see Trump impeached again. Just long enough that Mike outlasts Trump.
But these are fleeting, these wishes. He is ready to die. I am ready (as ready as I can be) for him to be out of suffering, out of pain, out of this earth. We have done so much to prepare, Mike and I. Mike leaves children who know how much he loves them. He leaves them with hours of his voice in interviews, explaining that he knows he must die and that they are his greatest joy. Their father’s voice in the Library of Congress, archived forever for anyone to find. His grandchildren. His great-grandchildren. When the two of us are no more than family legend, that love and peace will still be there.
What a gift it is, those words. And I am grateful.
He leaves a community of friends who will never abandon his children and widow. And I am grateful.
He leaves a home full to the brim of memories of love and joy, of jokes and laughter, he leaves very little that is his alone. And for that, too, I am grateful.
At the beginning of the pandemic, I felt strangely at peace with the world. People were panicking, terrified, worried about their loved ones and illness and things so far beyond their control, and it felt right. The rest of the world shared the anxiety I was living in, the world and I were in the same place.
The world spent much of 2020 moving on, blaming the calendar and not having to grapple with specifics. But as in any year, people got cancer, people died of cancer, people were married, people had babies. Life doesn’t stop because of one horrible thing taking up all your emotional bandwidth, if I have learned anything these last fourteen years, it’s that.
And as we approached 2021, the country and the world focused on 2020 as the problem, not on the conditions that created this shitstorm. I held my tongue. My 2021 would be marked, early, by Mike’s passing. My 2021 will be defined by grief and healing, by rebuilding a family of four from a family of five, by accepting changes I don’t want but also fill me with anticipation of an almost joyous sort. I don’t get to choose these things, they simply are.
Now that the country is on fire, with flames set and stoked by the exiting president, it feels comforting and appropriate that everyone around me is learning this lesson. Of course 2021 was going to start with trauma, there was never a chance Trump would leave peacefully. Of course 2021 was going to start with grief, pandemics don’t abruptly end as they’re crescendoing. Of course these pains would be.
My husband is leaving this world and doing so with more grace and dignity and peace than I have ever witnessed. It is an honor to be at his side, telling him I love him and that he has done everything right. Telling him we’re going to be okay, that he’s seen to it. Telling him he has nothing left on Earth he must do. Telling him over and over again how much I love him.
“I’m going to spend the rest of my life trying to be the person you’ve always believed I already am,” I told him. His eyes stayed closed, but he whispered, “You’re perfect.”
Each time he smiles, it’s like the sun rising in my chest. His smiles, however faint, buoy me. I think again and again and again about our wedding day. In my dress and veil, I walked down the aisle. Mike put his hands on my shoulders, grinning in a dizzy, disbelieving way, lifted my veil, and leaned in.
“Not yet,” I whispered. “You have to wait to kiss me until the end!”
Now, between sleep and delirium, he smiles and purses his lips.
This is the end.
I close my eyes and kiss him.
You can donate to a GoFundMe for Mike’s end-of-life care here: Love for the Grover Family
You can read more about Mike’s last year here: Brain Surgery in the era of Coronavirus
Read my most recent post here: Our Last New Year’s Eve
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