One of my favorite quotes on dying comes from the late Paul Kalanithi, in his book When Breath Becomes Air:
The last day of your life is not the sum of your life. The sum of your life is the sum of your life.
I’ve thought about this quote a lot over the past three years. As I’ve discussed Shawn’s illness and death, both in my private life and on this blog, I’ve thought about how I needed to keep remembering other parts of him. I’ve tried – often unsuccessfully – to push back on the bad memories and remember the good ones. Yet try as I might to think otherwise, that time period from when he first felt sick on October 10th, 2017 to his death on January 9, 2018 has defined many parts of Shawn I remember.
I hate that. I wish that I didn’t think about Shawn’s suffering so much. He lived for forty years without illness, and even when he was suffering in the last few months, he was still Shawn.
In fact, one of my clearest memories from our life together was a night when we went to a concert with our friends Josh and Becky. It was early November, 2017, and Shawn had started on yet another antibiotic. He was convinced that this new drug was going to be what made him feel better, and when I asked him if he still wanted to go to the concert, he said, “of course I do!”
We went out to dinner and Shawn told us all the gory details of his latest infection. Sure, this sounds like it could have been pretty gross, but actually it was hilarious. I know, I know – there he was, joking about his strange illness, the one that had left him bedridden for days, the one that would kill him two months later, the one that was literally eating him alive….and it was funny. Mostly, it was funny because we all thought it was temporary. But it was also funny because Shawn was poking fun at himself, making light of his supposed “wimpy-ness” and generally enjoying the evening. He was, in short, being Shawn.
Afterwards, we went to the concert and danced to the music and I think even had a couple of beers. I remember thinking how normal it all felt as we left, but then as we were leaving, Shawn bent over in a moment of pain and I was brought back to reality.
And yet, that’s not the only memory I have of that evening, or even of that time period. Yes, I can recall a lot of the times when he had terrible pain that fall. But I also try to remember the times when Shawn was able to push past that pain and simply be a person in this world.
I often hear from people who are facing a terrible cancer diagnosis. Sometimes it’s someone who I know vaguely from church who I talk with on the phone about their fears, and other times it’s a dear friend who I cry with over dinner. My mind can often skip to the end, and I will think, “what if my friend becomes a widow?”
But that’s not very useful, is it?
Because here’s the thing: even if you’re living with someone who is sick, that person isn’t gone yet. There is still so much more life to live and some of the best days can be those sick days. I know that sounds crazy, but I found it to be true. There’s something about knowing that your life could be cut short that makes you really value the time that you have – and the people that you have around you.
I try and remind myself of this when I’m talking with people who’ve received a terrible diagnosis. Yes, it’s important to plan and talk about what could happen in the future. But there’s also so much that a person is – and can be – even as he or she is dying. Shawn and I became closer than we ever had in those months before he died. In the most horrible and bizarre way, it was a truly good time in our marriage.
When Paul Kalanithi wrote, “The last day of your life is not the sum of your life. The sum of your life is the sum of your life,” he was, of course, talking about the entirety of a person’s life. I think that makes sense. But I’d also add that thinking about this “last day” can sometimes obscure the fact that a sick person and his or her family can still experience good times during the suffering. There can still be nights when everyone laughs really hard and mornings that feel joyful.
Dying can be awful. There’s no way around that sometimes. But knowing that you or your loved one is going to die shouldn’t mean that you focus completely on the end. There’s still life to be lived, whether it’s a day or a month or a year.
(This cover photo was taken by our dear friend Stefanie Harrington just six weeks before Shawn’s death. He had been in bed that morning, but had rallied for photos and tree decorating. In that moment, he had been making faces at the boys to get them to smile, and Tommy started to laugh.)
Image Credit: Stefanie Harrington Photography.