This story is about the lesson’s I learned through experiencing another’s loss. I had flown to Florida just after New Years where my mom had been on life support since the Christmas holiday. My intention was to help my grandmother navigate the medical system and resulting crisis: paperwork, consent forms, decision making about medical procedures, facility transports, ambiguity, fear, anxiety and the logistics of living that were fast becoming unmanageable for her. It was a whirlwind of responsibility, staying tuned into ongoing work responsibilities, navigating family relationships across generations and advocating that my mother receive quality medical care.
I was there for 17 beautifully painful gritty days making calls, literally chasing doctors, asking questions, researching various health conditions, taking a crash course in medical lingo, relaying and translating medical conversations to my family, shopping, fixing meals and grounding myself however and whenever I could. When I returned home it was still unclear if my mother would live or die. On the heels of my return, I found myself reflecting in a quiet private moment and there it was. As clear as the southern California sky in February, the thought that had been dancing around in my subconscious and eluding me for weeks was finally fully formulated and perceptible. I’ll forever be grateful for the gift of life and with it, inevitable death.
The experience of seeing someone I love in critical condition with no answers and no guarantees was truly an unnerving emotional place to be and prompted me to remember fondly a former colleague. Though my colleague passed away several years ago, I think about her quite often. I didn’t know her exceptionally well but respected her a great deal. I admired her as a professional woman who accomplished much academically and is predominately remembered for her contributions to the learning and development of children. Her death was surprisingly hard for me. But after returning home from taking care of my mother, I suddenly understood the gift my colleague and her family had given me.
Perhaps I think of her often because of the selfless gift she gave of letting me share in her death. Conceivably I understood the significance of this selfless act on some level, and maybe this is why I sat immobilized, reading through countless lengthy blog entries written by her loving children. Deliberate detailed stories of pain, fear, miscommunications, well meaning medical professionals, setbacks, insurance appeal processes, doctor appointments, test results, disease terminology, flawed systems, plans for the weekend, prompts to appreciate what you have and reminders peppered throughout of the importance to advocate for the quality medical care of your loved ones.
Reading these entries stirred something deep inside of me. At times I recall feeling deeply sad and isolated. In retrospect, I assume I was not alone. I imagine the family’s decision to share their reactions to the inevitable loss of their mother and the experiences encountered along the way transformed computer screens into self-reflective journey machines. Office and work spaces turned into nurturing wombs where in isolation we were free to visit, if only for a moment, the intensely raw painful beauty of life and loss.
Consider the challenges of navigating a financially driven deeply flawed system designed primarily to extend life at literally any cost. It dawned on me in that instant of self-reflection upon my return from Florida that my own motivation to fight for the quality medical care of my mother stemmed directly from the experiences of grief my colleague and her family shared so selflessly by living and navigating their experience authentically and publically.
…ask questions, keep a full copy of your medical record in your possession, request copies of all labs and test results to read for yourself and advocate for the quality care of your loved one at every opportunity were just a few of the important messages that have remained with me. These messages have empowered me to advocate for individual and familial integrity in a predominately sterile, financially driven, politically laden all-be-it, well-intentioned environment. In the face of tremendous loss I could recognize the gift. Not just a blog or message board offering periodic updates on a deteriorating loved one but an embracing of life and of it slipping away and taking it all in. In all its devastation, the human condition of loss motivated one family to give back showing others the art of advocacy. I’ll forever be grateful for the honor of sharing in a small way the family’s tragic loss.