I lost my mom twenty-four years ago. After August 31st, I will have lived more days on this planet without her than I had with her. For twenty years I have walked in her footsteps. I have identified with nursing as my core profession, cultivated an abiding respect for the power of community, and made personal sacrifices to improve the human condition. Although Mom was a nurse, I often contemplate whether I would have been led to nursing without the experience of walking with her through a swift and cruel terminal illness. Whether due to rebellion, or my wish to differentiate myself during my first round of higher education, I was determined not to follow in my parent’s footsteps.
That slowly changed after Mom was diagnosed with myelodysplastic syndrome, a blood disease in which the body fails to produce mature blood cells, just three months after her fiftieth birthday. She had been traveling abroad when she suddenly developed acute debilitating fatigue, shortness of breath, and jaundice. Thinking she had acute hepatitis, her travel companions rushed her to a hospital in the Netherlands where she received a preliminary diagnosis of leukemia and an urgent blood transfusion so she could fly home safely.
For the next year, I flew home to be with Mom on multiple occasions. I accompanied her to clinic appointments, watched while the nurses searched for a viable vein for a new intravenous catheter, sat with her during countless blood transfusions, and tried to understand the foreign language of medical terminology during morning rounds when she was hospitalized. I experienced first-hand what it was like to be a family member of someone with an illness with no clear path to cure, the overwhelming powerlessness and disorientation of navigating the medical system, and the devastation of the news when her illness progressed to incurable acute myeloid leukemia.
I also experienced what it was like to advocate for someone who didn’t want to follow the rules of modern medicine. Although Mom was trained in the medical sciences, she preferred herbal concoctions, homeopathic tinctures, and psychic healings while she resisted scientifically proven therapies. Only after an acute blood crisis nearly ended her life did she follow the recommendations of her care team and accept an inevitable course of chemotherapy. By then she was so weak and unstable, she required a 30-day hospitalization in an isolation ward due to her compromised immune system. After that course of chemo, she received the gift of a three-month remission that gave her life back, and I received the gift of hope, only to have it crushed when the leukemia rose again with a vengeance that ended her life just one year after her diagnosis in the Netherlands.
I never met the nurses who cared for Mom overseas, and I do not remember the names of the nurses who cared for her during that year on the oncology ward of an academic medical center, but their impact on me was profound. Like the segment on one of my favorite Podcasts, Hidden Brain in which the host plays gratitude stories of strangers in My Unsung Hero, while my personal values diverge from the general culture of “hero worship” that has become normalized in healthcare professions (more on this in a future post), those nurses were my unsung heroes. They could do for mom what I could not do for her at the time. Additionally, when we felt scorn and judgement from the physicians for her personal choices about alternative therapies, the nurses consistently met us where we were and cared for her and our family with loving compassion.
One nurse had a profound impact on me and in retrospection, our interaction contributed to my own decision to pursue a nursing career two years later. One afternoon during that final summer, I sat next to mom in her hospital room playing my guitar and singing a playlist of her favorite folk songs from her era and some of my own works. The nurse on shift paused after hanging a new bag of IV fluid to compliment me on my musical contributions to my mom’s healing. She shared that she too was a musician, and she wished she could bring more of that gift to her patients. For the first time, my feelings of powerlessness melted as she brought my attention to the ways I was contributing to my mom’s healing through my gift of music. As we chatted, I learned more about her work and how nursing supported her in making a difference for others while having steady predictable work and time outside of work to cultivate her own love of music. That conversation undoubtedly influenced my decision to pursue nursing after two years of grieving my loss.
I lost my mom right at the time when I started renewing my relationship with her following the turmoil of my teen years and the individuation of my early twenties. I will always carry regret that I had such a brief amount of time with her as I began cultivating my relationship with her as an adult daughter. Yet, it feels auspicious that this is the moment I would decide to return to finish my BSN after twenty years in the nursing profession and two master’s degrees. In two years and three months, I will have outlived my mother, yet her legacy lives through me, and so does the legacy of that nurse/musician in her hospital room that summer afternoon.
Now as I look ahead to the part of my life that will be marked by more time without my mom than I had with her, recommitting myself to my chosen profession feels like the right way to honor her legacy. Today I answer the existential question of “If I only had two more years to live, is this how I would live it?” with a committed “Yes!” And, to those nurses reading this in the strain of burnout after an impossible shift, or nurse leaders crumbling from the weight of a million difficult decisions, never underestimate the immeasurable impact you have on other human beings, even in your smallest and seemingly inconsequential actions. Your legacy lives in every life you touch.
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