For Elliott and Those of Us Left Behind

Friday, we lost another from the Nolan clan – bright, boisterous, seemingly eternal Liam. He died peacefully, holding his partner Elliott’s hand, on a Friday morning. The text I received was brief but so thoughtful. Elliott was kind enough to have done so many things to help Liam make his passage through the pain. I want to take a moment to pay tribute not just to Liam, who was kind and funny, a red-headed ironic teacher, artist and uncle. He was devoted to his partner, Elliott, to his family, his niece and her daughter, to his uncle Jimmie, my husband. I pay tribute to all those who help their loved ones through their end of days. This is for Elliott, and for any others who bob in the devastating wake of loss.

I watched from afar as Elliott gracefully shared the news of Liam’s all-too-swift demise due to a cancer that quickly incapacitated him. There was a brave and beautiful announcement on social media when they had just learned the cancer was untreatable, and what ensued, I’m sure was a huge response of love and hope and grief that would have threatened to overwhelm even the strongest person. In addition to the day-to-day care for the dying, the primary caretaker becomes the secondary recipient and portal for messages from loving grieving onlookers, who need and want to say goodbye. I’m one person, and I know I bugged Elliott for several days, feeling terrible for interrupting their privacy, but needing to let Liam know how he had impacted our lives. Imagine that multiplied by dozens of friends and family. Elliott was so kind in allowing that to happen for me.

I’ve learned through experience that no matter how devoted you are, how dedicated to the elimination of your loved one’s pain and suffering, as the primary caregiver, afterwards, you may not feel that you have done the best job that you could. This, in and of itself, was an unyielding burden. I remember in the days after my mom’s death, after a fifty-day hospice in our house, the hospice social worker recommended I get some therapy because she could see how hard I was being on myself. Best advice ever. That was my second close encounter with loss and my brain was busying herself with many recriminations that I now know were saboteurs. I’ve learned in subsequent encounters with death what the caregiver’s purpose is,  what a privilege it is, and how hard it is. And I’ve learned to be kinder and far less judgmental of my actions and feelings as well as those around who may have wildly different appetites for knowledge or abilities to process what is happening.

I’ve been thinking so much about Elliott today, about the stillness after Liam’s last breaths, the mundanity of calling the hospice nurse; what feels like a terrible insult that they still need to come to verify your loved one has passed, in spite of how obvious it is the moment it happens, the light of life expelled and only the human husk remaining. Meanwhile terrified thoughts about the future, how everything will go in the coming days and months rampage the citadel of your exhausted heart and brain.

There’s the stark imagery of the remaining medical detritus, the rictus of your former partner’s body threatening to remain as the only images that you can conjure up when you think of them. Everything reeks of finality, and it seems there will never be any healing or recovery from the loss. After your loved one’s body has been taken, the wave of relief, the physical lightness followed instantly by the slamming, shaming guilt for feeling both your partner’s liberation from disease, and yours from the role of caregiver to someone dying. It’s a miasma that can threaten to overwhelm you.

It is then that you should go do something ridiculous. Get outside. Ride a bike. Breathe the fresh air and accept that you are indeed still alive and probably suddenly very hungry. And that all those feelings are normal. Our society may never normalize death because we are afraid of talking about it and dispelling the boogie man aspect of it. Were we able to talk more easily about death, we might realize how valuable every moment of our life is and activate ourselves to achieve our full potentials. There’s the really frightening thought, right?  

The next days are a blur of good intentioned helpers dropping off food, and showing up to remind you that you are still alive, and that you matter to them and they to you. There is the frantic cleaning and removal of all medical equipment, like a pregnant woman’s nesting but in reverse – the beautiful flower arrangements that may crowd every surface of your home, and the outreach of loving friends and family who check in not only on you, but to find out when the funeral will be. This is the last thing you’ll want to think about during those painful first days. And that’s okay.

Having said that, as incredible as it may feel now, so close to loss, the pain will ebb and subside. Not quickly, mind you; it will take as long as it takes, which may be way longer than you want it to take. It’s a part of the fabric of your life now, the knowledge about living and dying and the precious way we hold each other.