Here’s What It’s Taught Me About Living.
[S]parkling bright and eight months pregnant, my French-speaking surgeon in Montreal, Quebec, was perhaps more direct than she would have been in her native language. She’d just removed my uterus and everything else that I could spare from my abdomen, but she was reporting on what she hadn’t been able to remove of the sarcoma that had, in just the weeks waiting for surgery, spread beyond hope in my belly.
“You will die of this,” she told me matter-of-factly.
Chemotherapy, she said, might give me a few more months if it worked, but those chances were small. So, I consider myself pretty fortunate to still be here a year later.
Pre-diagnosis, I had just turned 50 and was extremely fit, healthy and happy. Nobody could keep up with me! I was excited about life. It had occurred to me that, with my family’s excellent longevity genes — and some good luck — I might very well live another 50 years. I was enthused about the 30 years’ worth of creative activities and research projects that I had ambitiously sketched out for myself. Both my sons, also healthy, happy and on-track, had moved out on their own; and after more than 20 years of solo parenting, I was ready for a little more fun. Deeply aware of and grateful for all the privileges that made my wonderfully full life possible, I figured I had had more joy in life than most would ever have.
But I didn’t get the good luck part, so now I am going to die.
And that is okay.
That was the first thing I told my loved ones. My boyfriend. My parents. My two boys. “I have a very bad cancer. I’m not going to be around much longer. It’s okay.”
They looked so hard into my eyes, gripping my hands, tears streaming down their faces, as I told them this. When I got to the “okay” part, they nodded. They knew I meant it. I was okay. It was okay. They were going to be okay.
These conversations, especially the one with my boys, were the hardest I’ve ever had. The image of my sons sitting at my hospital bedside and simultaneously dropping to their knees in grief is seared into my mind. Yet these conversations were also the most beautiful I’ve ever had. Though it was terrible to bring them so much pain, I have never felt anything like the outpouring of love we shared in those moments. And it wasn’t long ― that same visit, in fact ― before we were also laughing.
So, one of the first things my diagnosis taught me was that, as much as my dying meant tremendous loss, it also meant receiving gifts of unimagined beauty and joy and love, not just for me, but for my loved ones too.
Many people I meet have imagined me in a state of pure devastation and distress at my diagnosis. Loss brings grief; and because grief is painful, like everyone else, I try to avoid it. But the flip side of grief is gratitude for having had whatever is lost to begin with. I have learned that, to a surprising degree, I have a choice about which side to focus on. I could be sad about all I won’t experience in life ― becoming a grandmother is one of the hardest for me ― or I can be grateful for all the gifts, like my wonderful boys, that I was given and fully appreciated. Choosing a state of gratitude has allowed me to remain happy and even joyous in this time. Yes, there is still grief, but the tears are fleeting, and lately rare.
The Death Project is a blog where I journal about my life with terminal cancer. I wanted people to know that dying doesn’t have to be as bad as we fear.
Talking and writing openly about it has enabled my loved ones and I to feel okay. (My son and a dear friend have contributed to my blog, while my boyfriend has a companion blog and has also written about our relationship for HuffPost.)
It is my hope that our writing will help others face death with less fear and anguish. I always want to say, “it’s not the end of the world!” — though, of course, it sort of is.
Humor has also been a huge help. “I can’t lose my mom and the X-Files in the same year!” my son said in mock despair after he was nearing the final episode of his favorite series on Netflix. His girlfriend was aghast, saying “Too soon!” But it wasn’t too soon for the rest of us.
Allowing ourselves to embrace and even delight in the absurdities of life that can bring anything at any moment has lightened our sadness. It’s also a way into difficult conversations. It’s been hard for my boyfriend to talk about his future without me, so I joke about him bringing a date to my funeral. We agree that he should not be swiping through Tinder during the service ― though it would be fun to compare results before and after his eulogy.
Being so open about my terminal diagnosis was easy for me partly because I was able to accept it immediately. And acceptance was possible because all my life I have been thinking about death and making peace with it instead of fearing it. Having to die when I am still full of vitality has never felt unfair to me. Nor is it a surprise. Death was always part of the deal. And I wanted to be ready whenever it came.
The essayist Michel de Montaigne tells of the skeleton guest at celebrations in ancient Egypt, reminding revelers that there is never a time when death cannot visit, invited or not. And I have heard of another people who keep their own caskets by the front door as a reminder of their own mortality. I like the idea of such memento mori, like a discarded tombstone I once brought home during my youth after visiting a graveyard. I can see now how coming to terms with mortality has been worthwhile not just for the chance moment of a dreaded diagnosis: death has also taught me important lessons about how to live.
Death has shown me that when I am living the life I am meant to live, I am giving. When I discovered I would die sooner rather than later, my most urgent concern was that I didn’t have long to give all I had to the world. On a practical level, this meant getting my affairs in order: a lot of work since my will needed updating. Amid that long and tedious process, I wondered how people managed to die suddenly. There was so much to do!
But giving is much more than a list of bequests. I have also given to society through my teaching job, volunteer work and charity. But most importantly, I continue to give of myself. In my personal relationships, this means my affection, my compassion, my friendship and my love. I’ve had to remind my boyfriend that just because I’m the one who’s sick doesn’t mean I can’t still take care of him at times. Since he is jealous of our cat, I try to favor him with the head rubs. I love to give a smile to strangers, knowing many will pass it on. I try not to give unwanted advice to my sons, but I keep failing. And they still won’t dress warmly! There are so many ways to give: a word of encouragement; a compliment; any act of kindness, however small or brief. I want to give as much as possible, and not just to my dear ones but to everyone, to the whole dear world that I have loved so much.
But giving sometimes triggers grief when I know these opportunities are coming to an end. Like the 4:30 a.m. ride to the airport that I offered my younger son when he was nervous about missing his flight for his first professional tour as a circus performer ― the last ride I figured I would ever be able to offer him. Turns out, he slept through the doorbell, through my texts and phone calls, and through his circus partner’s texts and calls. I ended up pounding on his door until I finally managed to rouse a roommate who let me in to find him still soundly sleeping. We both knew it was the last time I would be able to rescue him. Losing his mother means growing up faster than he might have otherwise (though we also both know that in less practical terms I will always be there for him). He’s going to be okay.
I am aware too that my giving will have to switch to receiving as my disease progresses. Learning to ask for and accept help has been the hardest challenge for me, accustomed to being the competent, independent caregiver myself. Trusting others to load the dishwasher properly is still a struggle! But I remind myself that giving others the opportunity to give is also a gift.
I know there can be no regret in a life lived giving in this way. Though I’m not particularly concerned about immortality, I can also see how it resides in this giving: much of what I have given will still be there in the world when I go. That is what lives on. And the most powerful of those gifts, the one that surely never dies, is love.
So how do I live while dying? Ideally, the same way I have lived my life.
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