It’s Not All About the Last Day
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.
Thank you. We are living that right now. I have told my kids a number of times that people think we should be sad all the time, but that it isn’t true. We can have good memories, fun times, even if my husband is sick. Yesterday we found out that we likely won’t have years, now I am working on enjoying the time we have. And making Christmas wonderful for all of us. I am still very sad, but I guess that is to be expected.
Of course you’re sad – and of course you can also still be happy! It’s such a strange, strange time when you know that life will be cut short, but you don’t know how long or by how much, etc. But yes, doing what you can to feel the good (while allowing yourself plenty of space to feel the bad) can really make a positive difference. Hang in there. We’re all pulling for you.
So true Marjorie. My partner and I were the closest we had ever been from his diagnosis to his death 4 months later. We didn’t know how bad it was so we didn’t plan, grieve or catastrophise. We lived in the moment, we maintained the hope that he would be the one in a million to find a cure for the one in a million rare cancer he had. We fell in love again, we laughed and enjoyed each other’s company as much as we could . It made losing him so hard but I have no regrets about the way we lived those 4 months and our kids and I can remember the man he was not just the sick man he became. Thanks for sharing this.
I love EVERYTHING about this comment. Yes, yes, yes to living as fully as you can in those moments. I mean, I knew Shawn was probably going to die, but we tried not to focus on it, and in the strangest way, it made the time better. Thanks so much to you for sharing your story as well!
I am trying to follow this advice after reading the book on your recommendation. I have to keep reminding myself of this truth. Thanks for giving me strength through your words and stories.
Thank you for saying that. And yes – the book is amazing. I’ve re-read it a dozen times.
There is so much †ruth in these words. Our 20 year marriage wasn’t great, but the 9 months from Bryce’s diagnosis to death may just have been the best of them. We were present for each other, had the most real conversations, plenty of time together, and fell in love again. It was a gift, despite the fear and the physical decline. I treasure that time and for the reasons above, cherish it. I honour everyone going through that time now, and send love.
Oh, that’s a beautiful sentiment – thank you for sharing. And yes…it’s such a terrible time, and yet it can be wonderful too. Thanks for sharing your truth because it reinforces this idea. A terrible diagnosis is not the end – at least not yet.
I am glad for you that that was your experience. Mine was most definately the opposite. Once my husband found out he had terminal cancer my kids and I spent 15 months with a person we didn’t recognize at all. He died long before he actually died. This was not his first round with cancer either so when you talk about remembering the good times I would have to reach back to 2013 to access those. This sounds depressing but he’s been gone for 18 months now and we are moving on. As I look back it doesn’t hurt quite as much as it did. We were married for 27 years and most of that was wonderful until cancer robbed him of his spirit.
I really appreciate this comment, and I know that it’s your truth and the truth of some widows – and it’s so hard. I’m so sorry. It also reminds me to say – as I sometimes forget – that I really can’t speak for all widows or even for a majority of widows. This was MY truth – but not everyone’s. Thanks for sharing.
How strange it is that one can suffer from the anticipation of death and still extract happiness. I too would acknowledge that the 2 years of Shaila’s struggle with multi myeloma were some of the most precious time I had with her. I credit her for the grace and strength she had to fight without taxing her family with grief and self pity. What a gift that was.
Yes – it is so strange. And also, it’s such a gift sometimes, too. I’m so glad you got some good time in the last years.