In October 2021, PRA staff members participated in the “Back to School Challenge” to expand their knowledge and enhance their intellectual wellness. Staff were encouraged to learn something new outside of your program area, scope of expertise, or main interests.
I decided to do something bold for our fall wellness challenge. TED Talks were a recommendation on the challenge list, and I LOVE some TED Talks! I browsed by category, looking for what was calling out to me. Today it was cancer. You see, my husband is fighting his second round of brain cancer, and I thought it would be a “brilliant idea” to wear mascara and watch something cancer related. Not just anything cancer related, but “My Mother’s Final Wish—And the Right to Die with Dignity,” by Elaine Fong. Those of you who know me know I’m my own kind of unique, so this fits right in with my normal daily actions.
I jumped into the video the moment a meeting I had scheduled was canceled. Here I am sitting and watching this brave woman on stage not cry while talking about her mother’s fight for life from the time she was born in China in 1948 to the time she chose to die. I’m over here trying not to cry at the thought of my husband’s cancer and my own mother’s fight for life. Hence the mascara comment.
Elaine Fong’s mother was on her second round of cancer when she chose to live her life and let it end. I did not know my husband when he was diagnosed and went through treatment 10 years ago. I came into his life just over 6 years ago. I always knew it was possible that his cancer would come back; I was told it was almost a guarantee. But hey, 5 years out, 6 years out, 9 years out, we were looking in the clear. And then 2020 hit us. I’m not talking about COVID when I talk about 2020, I’m talking about all the family medical issues and deaths that occurred, including finding out via a letter in the mail from the U.S. Department of Veterans Affairs that my husband’s tumor was growing back.
According to Ms. Fong, 5 out of 50 states (at the time of the recording in 2017) have Death with Dignity legislation. It is one of many end-of-life care options available, like hospice. Her mother had a whole plan laid out for what she wanted her family to do to celebrate her life after she passed over. Death has been something I have always talked about with my parents. I have always known what their wishes were and they have known mine. Yet why is that conversation so different for my husband? When my husband scheduled his brain surgery for this year, we decided to update all our legal documents. We didn’t talk about what we were going to write or elect; we just simply filled out the forms and signed them.
Ms. Fong talks about how her mother was always a fighter and never took no for an answer. As long as I have been with my husband, he has had the core belief that we are all dying, every day. Every day could be our last. That is so cliché, yet when you are faced with the potential loss of a loved one, you feel it. You feel it harder every day. Every day, more of my husband’s hair falls out and is a visual reminder of his illness, and the phantom Grim Reaper lingering.
Ms. Fong is a brand designer. In her talk, she shares how the hardest job she ever had to design was her mother’s life celebration. Even though her mother was very detailed in her request, down to the food and the flowers, it was still hard. Ms. Fong shared stories about how her family helped make her mother’s life fun and enjoyable for her while she remained on Earth. When I think of my day-to-day actions often, I am left with the thought, “If this is my husband’s last day, will I regret my choices?”
Ms. Fong said she focused so much on executing her mother’s end-of-life request but never focused on what it felt like. So, one day she asked her mother, what does your cancer feel like? Her mother responded honestly. It made me think how often we care for others and forget that it’s overwhelming for us as caregivers, but it is overwhelming for those being cared for, too. If we do not talk about death and dying, we make it taboo. It is the same conversation I have every time I give talks about suicide. Why do we make topics like death, suicide, money, and politics so taboo? Why do we fear difficult conversations? Why can’t we talk about the things that we believe in and be okay that others do not agree and do not believe what we do?
Ms. Fong did not want her mother to end her life, but she respected and understood her decision. She knew it was her mother’s life, and she could accept her decision and help her finalize her life with dignity and joy. I think we often get caught up in emotions when we are faced with some of the parts of life that are not easy. We get too focused on our emotions and often lose the big picture. We forget that our lives are short, and that means the lives of those around us are also short.
Ms. Fong posed a good question during her talk, “If you could design your own death, what would the experience be like, and how would you want it to feel?” Having the conversation about death can help us look at death differently. In Ms. Fong’s words, we can rebrand death “from feeling scary or desolate or bleak to re-imagining it as honest, noble, and brave.” We here at PRA have tough and difficult conversations every day, whether it be on suicide, incarceration, or homelessness. All those things include fear and the risk of death. Every day in our own lives we choose how we live, but are we really living? Are we just making it through the day praying for the weekend? Are we just letting the one life we get pass us by? Are we missing the lives of those around us? We are dying every day, but we can change how we live, how we truly live, while we are still alive.