I didn’t conceive of death… actual death… until I was 27 years old.
It was the middle of the night, as most things like this usually are. My grandma’s chemotherapy hadn’t been going well. Hospitalized in downtown Indy, she struggled. Jeff was visiting for the weekend. We were engaged. Our wedding was four months away.
I got a phone call sometime around 1 am, maybe? I don’t remember which family member called. But they told me to get downtown.
Jeff and I got in the car. We drove downtown. I knew that things weren’t good, but I still couldn’t conceive of anything other than my grandma’s recovery. Of all the people in my childhood, I had spent the most time with her. We had spent hours upon hours of one-on-one time together. She paid me pennies and nickels to brush her hair. She took me to garage sales every Thursday morning. She sat with me – the two of us at kitchen barstools, with Alex Trebek buzzing through his columns in the background – while I did my homework in middle school. She attended every high school play; every high school show choir performance; every high school awards night or dinner. She went to parent-teacher conferences and brought me my homework when I forgot it. She came to Mom’s Days at Delta Gamma. She took me back-to-school shopping in August. I called her every day in college. I was talking to her when the second plane hit the World Trade Center. Once I started teaching, I called her every day at 3:30 pm. And I spent my entire life watching my grandma dance her way through cleaning the house every. single. night as she listened to the Bee Gees or Diana Ross.
I couldn’t conceive of a world without her in it.
But that night at the hospital, I learned I would have to. She would die. Complications from radiation.
Jeff was there. He couldn’t conceive of it either. I rarely saw him despondent, but he was. And I was. And when we got back to my apartment as the sun came up, neither of us slept. My grandma died a week later.
But even more inconceivable than a world without her was this: she was at peace with dying. She was ready to see what it was all about. If she had it to do over, I’m not sure she would have agreed to therapy. She would’ve counted her blessings for a full life, and called it a day.
I was mad. Jeff was mad, too. How could she just… die?!
I thought about that a lot when Jeff was sick. And I realize now. I get it now, as much as I can without having cancer or a terminal illness.
Since Jeff died, I have been praying hard for a way to make all of this useful… everything that happened. There must be some use for it. Jeff died, and I watched, and I know things now – things about cancer and caregiving and mutations and clinical trials; things about CT scans and IV antibiotics; things about edema and specialty pharmacies and how to pack a ‘go’ bag; things about how to tell your children that their father is going to die. These things must be useful somewhere in the world. I feel a calling to do something with this load of… whatever it is.
I reached out to people at The Cholangiocarcinoma Foundation. I’ll continue to do that. I don’t know what would come of that, but they are my people now. Cancer people are my people. Dying people are my people. I feel an overwhelming sense of solidarity with them. An obligation, in the most holy sense.
I thought about how there is such a need for cancer advocates. You’re having a baby? You can hire a doula. You’re a student with a diagnosis? You can hire an advocate. You have cancer? You can use a nurse navigator who works for the hospital, not for you.
I thought about – if I did that – would I need to go back to school? Should I learn about other faith systems, so I could be of spiritual help to others? When Jeff was sick, many, many hospital employees offered medical and organizational support. But not a single person offered spiritual support. Maybe it is offered. And maybe we should’ve sought it out. But maybe it’s just as well we didn’t: I would’ve paid little attention unless I knew the person was Catholic. And I am unapologetic about that: in a time that is so stressful and emotionally-charged, I would’ve needed someone that shared my belief system. I would’ve needed a common understanding to bypass all of the explanations. So I don’t know if I could offer spiritual support. But it’s needed. Medicine prepares to treat the acute physical need: the cancer. But the spiritual one – the existential one – is inextricably linked to cancer. And we’re not prepared for it.
It would be easy to blame hospitals, but the problem didn’t and doesn’t start there. That’s just where it’s exacerbated.
I cannot recall a time when I talked about death, outside the context of a funeral or church, before my grandma went home in an ambulance to go on hospice care. I don’t know what a ‘death’ conversation would’ve looked or sounded like.
There is a need to help the living — we need cancer advocates. And if I were independently wealthy, I think that’s what I’d do. I’d be a cancer doula.
But there is also a need to help the dying — we need better support for when medicine can’t heal you. When you’re not sick enough to be in the hospital, the resources – in watching Jeff – are inconsistent and mismanaged. Doctors learn to heal. And when they can’t heal, where does that leave them… leave us? If I were independently wealthy, I’d volunteer to sit with dying people. I’d volunteer to help their families, if they’d allow me to walk that path with them.
And there is a need to help everyone else. We need to consider our own mortality. Like, for real. In societies past, there were bells rung in the town square when someone died. There was child mortality and people didn’t have the expectation that they would live to 80 years old.
I have zero desire to go back to those societies. They are not the good old days. But I suspect we have traded health and longevity for some sort of spiritual awareness. And I mean spirituality in a way that is not synonymous with religion, but is also not mutually exclusive from it.
I continue to read, to try to chisel out some sort of shape that allows me to pick up and examine death or my suffering or Jeff’s suffering. In the essay I read most recently, it says, “There is a general agreement between Hinduism and Buddhism that no human life can be filled with a sense of meaning and efficacious action unless it is lived in full acceptance of the fact of death.”
What a paradox. You cannot live fully, unless you have accepted — fully accepted — that you are going to die.
I thought about this line a lot. I stopped. I bracketed it. I reread it. I thought about the conversation that Jeff and I had on Thanksgiving, and then again, in the hospital, when I told him he was going to die, and he should think about how he wanted to spend his time.
“Omigod, Jess — it sounds like you want me to die!” Jeff said, through tears.
I had expected him to be mad, to say something like that. But it didn’t make the blow any less brutal. I felt like I had betrayed him. I felt like a horrible wife. I felt like I had let him down at the most vulnerable moment of his entire life.
“Jeff, of all the people in the world, I am among the people – your mom and dad and sister and our kids among them – who most doesn’t want you to die. But you’re going to. And I want you to think about this: you have little time left. How do you want to spend it? If you accept that you’re going to die, you can shift your energy from fighting, to accepting. You can come home. You can talk to God. You still have so much you can do, but you have to decide where you’re going to put your energy.”
I don’t know what that must have been like for Jeff. To be 36 years old and have cancer. To have his body become unrecognizable on the inside and out over the course of eight months. And to look at our two kids, and at me, and realize that the life he built would not be lived. He had planted a garden and would never see it grow.
I thought about the contradictions in society’s language: we have greeting cards out the wazoo that joke about getting old, like it’s a bad thing. But isn’t getting old what everyone wants? I’ve started hearing people my age complain about getting close to – or just passing – their 40th birthday. And I’m not proud to say that I resent it.
“Jeff never got to 37,” I think. “It’s not fair that you get to complain about 40.”
Talking about death doesn’t mean that you want to die. It doesn’t mean that you are unhealthy or morbid or macabre. I actually think that talking about death – yours, your loved ones – is one of the most healthy things a person can do. If that essay is right, then talking about death actually means that you are more fully living.
My brain hurts from all of the thinking I’ve been doing. But I the more I read, the more refreshed I feel. The more I read, the more I understand how little I know about life, but also how much more in control of it I am.
I don’t expect to ever arrive at any ‘answer’ or ‘conclusion’ about what happens after we die. I feel like I’m in a degree program that won’t have a graduation or tassel at the end. And it sucks that the tuition paid for this education is the life of two of the people I’ve loved most in the world.
I don’t know what all of this will be useful for. Maybe nothing. But I have faith that this is what I’m supposed to be doing right now. And I have faith that watching my grandma and husband die… it wasn’t for nothing.