The Massie's Message Plays in My Advocate's Head With Each New Challenge for Individuals Living with TBI
I Walked Through Fire Wearing Shoes of Asbestos From the Massie Factory of Advocacy
Oh, of course I exaggerate, but everything about both their son's experience with hemophilia, and my son's experience with Traumatic Brain Injury was and continues to be, exaggerated.
The Massies paved the road of advocacy for a severely ill child from the dust of their research, innovation and sacrifice in paving a path that I got to follow. And I thank God that I had read the book years prior to my introduction to TBI.
Their Son's Illness Expired and He Writes About It
Right off we can also thank God that Robert K Massie's illness was given the boot, courtesy of a liver transplant - an event unthinkable back in the 70s when transfusions tortured his childhood at the same time as they sustained his life. Likewise, some individuals who suffer a TBI make miraculous recoveries, but since that didn't happen in our case, I often draw energy from remembrance of his parents' story.
Since they did medical research in a time when few options existed for hemophilia treatment due to the fact that America views illnesses and infirmities as mere pebbles on the road of life for others - but when it strikes those close to us, we come to a different realization. Calamities make it all too clear that disability services should not be dependent upon one's ability to pay for them.
My eyes opened wide in shock when I discovered that my son was the lucky boy in the ICU - because he was still covered by the family health insurance policy. He lay there cocooned in bandage wraps, wired to devices, the only parts visible being a face and arms so marked with swelling and bruising as to be unrecognizable. This was luck.
Right away I followed the Massie's example and crossed the street to the medical center's library, immersing myself in medical terminology that made no sense. Still, I determined to learn something so I wouldn't feel like an idiot. The Massies did it, I reasoned, so maybe I could too.
At each ensuing step, each roadblock, each insurance and service denial, as the costs mounted upwards toward half a million dollars, I replayed their model of empowerment and did my best to walk in their shoes. Below are a couple links to more of my story of TBI advocacy.
Photo: the background frame around the article is a detail from one of my Power Series Paintings Â©1990
Each of the Three Massies Has Gone On to Write
Bob writes beautifully about his personal experience of suffering and recovery and carries his interest to work for the cause of establishing a more just medical and research system.
Suzanne continues to enrich our knowledge of the Romanov's and Russian History, with her richly detailed and warm prose.
Robert K. elaborates on the interest in Russian Romanovs that was piqued by the hemophilia connection.
The hemophiliac son has become the advocate for social justice.
He is truly a tribute to resilience, having suffered far beyond what most of us can conceive of.
But he turns his attention outward to others who suffer in today's profit culture where too many persons with illness and disability, age and other differences from the power culture.
Suzanne unpeels the layers of knowledge and wisdom from ancient Russian troves of knowledge.
Robert K. brings closure to the mystery surrounding the climax and devastating death of the last Czar's family.
Knowledge Has Come A Long Way But Research Needs Are Still Strong
Hemophilia or Traumatic Brain Injury - the Massies Modeled Persistent Advocacy for Me
oil pastel Bending the Bars Â©1989 Leslie Sinclair
Although the Massie's son Robert lives with hemophilia and writes his own story, the lessons I learned from his parents' book Journey are transferable to advocacy for any disabled person.
As I incorporated their skills, and drew upon my journalistic aptitude, their story resided as if it were like a backpack riding on my shoulders. I visualized the backpack as having been woven from the fibers of the Massies' encounters with roadblocks they jumped like hurdles.
While my son remained in ICU and on the Acute Care floor, even on into Acute Rehab, I was repeatedly cautioned that he may remain comatose forever. Like the authors did, I examined each obstacle that was fraught with problems. Once I identified the potential for clearing the gap of ignorance or disinterest, I began amassing facts.
But first, my determination to make the most out of the worst hooked onto the umbrella of Justice and never let go. So, if It appeared unjust, then I read, wrote and painted and called, as part of my research. From these the strategy formed and, with the umbrella unfurled I challenged the status quo, with fierce success.