On Grief, the Death Rating System, and the Beginnings of Art Words and Yoga
Updated: May 2
On August 16, 2019, I was at a work picnic at Bates Technical College. The summer sun beat down on us and we college employees relaxed in the South Campus courtyard, listening to short speeches and chatting while we ate barbecued hamburgers and hot dogs. Everyone relaxed and most of us laughed, relieved that the long school year was finally wrapping up.
A few minutes later I went back inside the E Building to my much cooler office, and I noticed I had a voicemail on my phone from my 21-year-old nephew. Gavin almost never called me and his voice sounded strange in his message asking me to call him back.
When I did, he told me in a shaky voice that his mom—my sister—was in the hospital. The doctors had found over 60 lesions in Mary’s brain and were transferring her from Issaquah Swedish Hospital to the Seattle Cherry Hill Campus.
I can’t remember what I said at all. I do remember that I first called my husband to let him know what was happening as I threw my things together so I could drive the hour to Seattle.
I also remember going to the college library to tell my friend and coworker Beth. I struggled to process the word ‘lesions’ and how Mary could possibly have over 60 of them in her brain. I remember how Beth and I stared at each other for a moment in shock and how she hugged me.
Mary had been hinting for some time that she wasn’t feeling well. A second year law school student, she had told me in May that taking her finals had been a real struggle because for some mysterious reason her right hand had stopped working. She simply could not move it. We both were grieving the loss of our mother from the year before and neither of us really had emotional space for much more. At least I know I didn’t. She was young and strong, running miles every day and, I later learned, making plans to complete a marathon. She looked like her usual stunning self with long wavy hair and beautiful clothes.
I didn’t give much thought to whether or not her disabled hand could mean something serious.
Somehow she passed all her exams, and then she was able to go on a trip to see her daughter who was studying in England.
When I talked to Mary after that trip, she said she had felt like she was our mother in Europe. Mom’s mental and physical health was never great after our father passed away in 2011, so I first began to hear what Mary was saying about her own declining health when she told me this. Later my sister told me she had worried about having Lou Gehrig’s disease or multiple sclerosis. She hadn't really thought of cancer as a possibility.
After I got to the hospital that August day, Mary’s husband told me of the debilitating headaches she’d been having. How earlier that day, he’d found her curled up in agony on the floor and how he told her they were not waiting for the earliest neurologist appointment she had been able to get—in October. She did not want to go to ER but he had convinced her at last.
In the Issaquah emergency room an MRI discovered the frightening number of lesions. Mary needed surgery to relieve the growing pressure on her brain stem and save her life.
I suppose her husband and I probably knew it was cancer, but it wasn’t until the surgeon came in and gently explained the diagnosis that we began to come to grips with it. My own brain refused to comprehend what was happening even then, and I went into a sort of automatic functioning while I waited and did whatever I could to ease her pain by learning her medications, holding her hand, and talking to her.
After they wheeled her bed back in, we told her about the cancer. This is another terrible memory in a day filled with them. I’m pretty sure she swore but the moment is too blurred with emotion for me to remember.
Things didn’t sink in until I walked back down the stairs hours later that night, and I went to pay the horribly expensive parking bill at an automated hallway machine. That was when I saw the NICU nurse who had been upstairs with us. He was also leaving for the night and when our eyes met, Ben told me how sorry he was in an incredible moment of shared humanity. I knew medical professionals well enough to understand then how very bad the diagnosis was. Nurses like my mother and my friends in the nursing program have a professional manner about them. The emotional distancing that they do is designed to help them and their patients walk through hard things with some needed detachment.
When Ben let that detachment slip to the side and offered me those words, my brain began accepting that this thing happening with my sister was deadly serious.
I did not know then how very fortunate we were to be with her and those medical professionals through that awful heartbreaking experience. I didn’t know how fortunate I would be to have those memories, painful and blurry as they are. If her cancer had been discovered six months later, we could not have been with her because of the pandemic.
So much more happened after that. There were misdiagnoses, radiation treatments on her head and lungs, another brain surgery, a year and a half of severe pain and nausea, and one last horrifically unsuccessful spinal surgery she went through without us by her side before she was paralyzed in February of 2021. She then went into hospice care for the last four months of her life.
Mary had a neuroendocrine tumor in her lungs that had spread to her brain before she ever knew it was there. It’s a very rare form of cancer and, we think, most likely came from her time living too near the Hanford nuclear site.
It’s an extraordinarily painful thing to write about even though I also find the writing helps.
I’m reliving it here in part because I have found so much solace in hearing other people talk about their own stories this spring as I unwillingly walk through the memories of losing my dad, mom, and then my sister during this season.
I recently watched a National Geographic episode about Kelsey Ellis and how she lost her own sister to COVID-19 complications.
And then I watched a PBS interview with Michael Lewis where, towards the end of the interview, he talks about the loss of his young adult daughter.
While listening to Kelsey and Michael, I marveled at the way they have made powerful connections and life-altering decisions in the face of their grief.
I also noticed that we often make comparisons when we think about our grief or the grief of others.
We can put the pain of ourselves and others on some sort of largely unconscious imaginary Death Rating System. Losing a sister, according to this unhelpful and unwritten rating system, is harder than losing a parent or a friend. Losing a job, a home, or our health is hard but not as hard as losing the humans in our inner circle.
If you are attempting to put loss on this sort of scale, losing a child may be the hardest thing of all—the pain many of us can imagine but avoid even considering to the extent that we shy away from parents whose children have died. It’s almost like their pain is worth so many points that we feel unable to be with them.
We can even fall into a comparison about the kind of loss. Is it harder to lose someone suddenly or after a prolonged illness? To suicide? To cancer? To violence? Is it easier or harder if there is someone or something like Hanford to blame?
I’ve come to believe that this sort of comparison (like most comparisons) is unhelpful and often damaging. It separates us from others and leaves us even more alone whether our pain has more imaginary points or fewer points.
In Atlas of the Heart, Brené Brown explains that comparison is normal and somehow prewired in us. She says we don’t need to make it worse by piling judgment on ourselves for comparing, but that it’s important that we quickly let it go as soon as we are aware that it’s happening.
On her Facebook page, Brown says: “I swim for many reasons but none more important than the constant reminder to 'stay in my own lane.' Nothing ruins my swim or my creative process more than comparison and competing.”
She is talking about the envy of others’ success, but I think this also applies when it comes to comparing our suffering. There really is no need to rate each other’s pain levels on a scale any more than there is a need to rate our successes.
And the hard truth is that most of us will experience grief and loss in great measure throughout our lives. You can be at a picnic laughing in the sun one moment and an hour or two later you might be in NICU telling your loved one she has cancer that has spread to her brain.
All of us will also experience that sort of loss at the end of our own lives when we leave this earth ourselves. We will all need to say goodbye to everyone we leave behind like my sister did at age 47. In fact, we may not even get the chance to say those goodbyes if our lives end suddenly.
It’s honestly impossible to face this but when I do anyway, I find I’m able to be with others—to see them fully when someone they love dies or they need to live through other unwelcome losses. When I see others, I’m also able to be more gentle with myself and my own pain. It’s a circle of compassion that has no beginning and no end.
Here are a few benefits to letting go of the DRS whenever and as quickly as I can:
Letting go of the Death Rating System lets me be here more fully with those I love, both those who are with me on this earth and those who have gone on.
It lets me be more present to those I love who are still alive even as I grieve deeply and carry those who have passed as a part of who I am now.
It lets me acknowledge how impossibly hard it is to be mortal and love other mortals.
It lets me write to you about what happened with Mary, knowing that my pain is unlike yours while also hoping that when you read about my sister and me you might feel less alone and more connected.
It lets me hope that you can see me fully and know that I can hear your stories too.
Maybe best of all, letting go of the Death Rating System lets me feel less alone. When I do that, I feel surrounded by my sister’s love as well as the love of those physically near. None of our losses are the same, and we all eventually lose things that matter so much to us that we can’t see how we’ll go on without them. When that happens, we absolutely need each other.
I have much more to say about Art Words and Yoga, how my practices have held me up through my losses (most of the time), and how I hope those practices might do the same for you.
But for today, I’ll close this post on the thoughts of our connection. I’ll remind myself gently that we cannot compare what we have lost but we can be there for each other. Kelsey Ellis, Michael Lewis, and I don’t know each other. Our losses are not alike. We each have walked alone through them even if we had others by our sides.
Yet we are deeply connected by those losses and how we choose to respond to them.
It’s a powerful paradox that we can be alone and together simultaneously but the more I lean into that, the more I feel able to keep doing what matters and the more I feel the presence of my loved ones, past and present.
(Written August 2019)
Shift change is at 7 am. If you get there before 6 am, you can talk to the night nurse before things get busy.
Starbucks is hard to find at first because the place is a maze. But after a few days you will run that maze like a well-trained lab rat.
Bring lots to do and pick what soothes you. TV is out because she’ll need to sleep whenever they let her. And you both hate TV anyway. Puzzles and sketches work for a bit. Maybe crosswords. Books won’t work because you won’t be able to focus like that.
No matter what you bring to do, you will spend plenty of time just staring at the privacy curtain that’s decorated with dandelion puffs.
The fantastic nurses are busy. It never hurts to speak up when she needs something or the IV is beeping.
Know the names of her medicines and about how often she is getting them so you can ask for more as soon as possible.
Don’t move the chairs across the linoleum floor like a dummy. That will wake her.
Food takes a while. Order the moment they clear her to eat. Watch for the tray in the nursing area and don’t let them take away the leftovers. She might need them to settle her stomach in the hours before you can get the next meal.
Try not to start tripping. Thinking of your childhood together or her round baby sister cheeks will be your downfall. Thinking of your parents. Thinking of tomorrow and the next day. Don’t do that.
Stay in the here and now.
Listen to her do the same.