There Will Be Blood; Death Spiral

Posted by in Blog, Health Care Humanity, The Patient Voice

By Susan Imperial

First posted in the “Turning a New Leaf” blog.

In late summer of 2004 at the age of 75, my father Al was diagnosed with a blood disorder of idiopathic origins.  He had been feeling chronically tired for several months, and when the test results came back, they revealed that his red blood cell production was significantly below normal.  It wasn’t cancer, it really wasn’t anything “present.”  It was, starkly and simply, a near absence of function.

In addition to the many questions and feelings that this news elicited, it dawned on me that my father’s Italian mother and sister had both had issues with blood, as they both had been anemic during their lives.  My father’s mysterious diagnosis prompted a reflection on my part that encompassed questions around genetics, correlation between illness and personality (my father had always been a bit of a hypochondriac), and, inevitably, mortality and death.

Being the life student/seeker that I aspire to be, I resolved to explore “death.”  I really hadn’t contemplated death in any real way thus far in my life, and my father’s illness felt like an initiation of sorts.  It announced to me not just the reality of my father’s mortality, but mine as well, as I occupied middle age at this point.

While the news was deeply concerning, it was also a call to vigilance, as I knew deep down that this was going to be a long and difficult journey for my father and his family, most particularly my mother JoAnne.

Western medicine threw everything it had at my father (he had health insurance over and above Medicare).  The list of drugs my father was prescribed for his condition, as well as for medication side effects, is pretty staggering:  Imuran, Prednisone, Levoxyl, Lisinopril, Aciphex, hydrochlorothiazide, Azathioprine, Phenytoin Sodium, Propanolol, Spironolactone, Furosemide, Levothyroxine, and probably more.  The reason I know the names of these particular meds is because my father journaled his medical condition meticulously over the duration:  Medications, dosages, when taken, medical procedures, bone marrow tests, blood counts and measurements of all kinds.  Pages and pages and pages.

In addition to, and in spite of all the medications, sometime soon after his diagnosis, the blood transfusions began, the sessions of which would last anywhere from three to five hours.  Apparently, receiving blood is a much slower process than giving blood.  At first, the transfusions were monthly, then twice monthly, until ultimately, in the last year or so, they were pretty much weekly, sometimes twice a week.

Through it all stood my mother.  She drove my father to all of his appointments and, as his wife, witnessed everything.

I was living across the Bay in Oakland, CA at the time, having moved there in January of 2005. Ostensibly, I thought I moved to Oakland to live with a boyfriend. In hindsight, however, it was also a safe distance from which to “keep vigil.”

Vigilance is a state of simultaneous observation, suspension, and disruption.  The most painful part of my vigil was watching my father (and mother) endure a prolonged (though contained) state of fear and anguish.  It was brutal.  I feel for all those who endure or have endured long dark nights of painful vigilance.

My father’s ravaged body finally succumbed to the illness at his home on June 23rd, 2009, five days after he had collapsed at the doctor’s office where he had been to receive yet another transfusion.  Present at the time of his death were, most thankfully, a Hospice nurse and his immediate family (my mother, my two brothers, and myself).

Minutes after he stopped breathing, I went into the bedroom that I occupied as a child and performed a ritual called The Death Spiral that I had learned just six months previously at a shamanic workshop of the Four Winds Society.  It is a beautiful and solemn ritual whereby the spirit of the deceased is released from the body and sent on its way.  I even had my notes from the workshop with me for referral.  I feel in my heart that I was successful in aiding my father’s spirit journey.  I felt he was at peace and happy for the first time in so long, and perhaps for the first time since I had known him.

Three months later, I moved out from my boyfriend’s apartment and into my own.

In the time since my father’s passing, this seeker has gleaned a few lessons.  First, we must acknowledge and honor the reality of our interconnectedness in order to healthfully and lovingly attenuate its influence over our identity and our choices.  And second, fear, particularly fear of death, robs our lives and robs us of life.  While I wish my father could have lived with more peace while he was alive despite his illness, I am so much richer for having kept vigil.

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