05/26/2020
Recently, I said goodbye to a woman I have known for 30 years. I first met her when I volunteered as a big brother for her son, Daniel. Big Brothers/Big Sisters told me that it required a minimum 1-year commitment, but after meeting Daniel, I knew it would be for life. It was a pivotal moment that connected all the threads of my future in ways I never could have imagined. Over the years, I became a part of Anne's family and advocated for her throughout her recent cancer diagnosis. Also, it was because of Anne that I found the oncologist that helped me save the life of my partner, Sharon, when she was diagnosed with GCT. And, through the unifying power of Altruism, when GCT ended our hope for children, I realized that I already had a son. Of all the things we choose to do in life, the ones that matter most and that irrevocably change us are those that we do in the human dimension.
This past February and March were very difficult months. Our Knight Family Care Team spent countless hours by Anne's bedside, often around the clock, to honor her wish to fight and to thrive, despite the odds and inevitable progression. And she did. She fought for every possible moment of life, and it was a life that ended far too soon for a woman so vital, caring and generous. Our vigil became more difficult as COVID-19 lock-downs went into place. Cancer doesn't care about social distancing, and it meant that we couldn't be with her at the end of her journey.
It's hard to express what it felt like to be barred from seeing your loved one in her final days and moments of life. I had so many mixed emotions and thoughts - the stress and sense of yielding in comfort care, grief, compassion, anger at injustice, the hope for strength to support those around me (especially Anne's sons), profound relief for her transfiguration and an end to suffering, and ultimately, some measure of mutual peace, giving way to exhaustion and the reflective calm, joy and exploration of memory.
We were allowed to see her, one-at-a-time, as she lay in grace at the end of her life's symphony. For me, it invoked the Adagio from Mahler 9 -- "Sehr langsam und noch zurückhaltend" as I held her hand for the last time. But despite the apparent fait accompli, I was determined to help her extend her life. Anne was a registered organ donor, unfortunately a gift and benefit that terminal cancer usually steals from its host. However, in February, Anne received a brand new pacemaker, something that she could, in fact, donate. So, I looked for and found a great donation program at the University of Michigan, My Heart Your Heart, where they re-purpose used pacemakers to help extend the lives of those who cannot afford them. Initially, neither the hospital nor the mortuary agreed to help the family with this donation. But, after some dedicated advocacy, the hospital agreed to do the extraction and Anne's pacemaker is now waiting to be processed.
The device that kept Anne's heart beating throughout the end of her battle will pay it forward, and, in a manner of speaking, Anne's heart will keep beating for years to come, saving the life of another. It is a gift that is only possible through personal sacrifice and altruism, and is a profound proof-of-life beyond the horizon of cancer.
It is taking time to grieve for Anne, and besides celebrating her life, I am writing this post to reach out to all of you who face the difficulty of having loved ones in care during the COVID-19 lock-down. It was very difficult and frustrating. Don't give in to bureaucracy. Keep advocating in a positive context for whatever safe level of restricted access is possible, be creative in your problem-solving and do all that you can to make the most of whatever shared time you have.
My heart goes out to all of you, and I hope that you are safe and healthy. And, if you are fighting a cancer battle with restricted family access, I hope that you will find a way to be together and to have the support you need and deserve. I will include the information about the pacemaker donation program below in the event that it may be of use. Please pass it on.
Anne Knight of Palo Alto passed away March 25, 2020 following a nearly 3 year battle with cancer. She is survived by her two sons, Ben and Daniel.
