Jerry Cornacchio- The Myth of Survivorship
Jerry Cornacchio, fellow Hodgkin's survivor, submitted this blog on what "survivorship" means to him.
(Please note: the thoughts and opinions expressed within the content are solely the author's and do not reflect the the opinions and beliefs of Hodgkin's International).
"I titled this article 'The Myth of Survivorship' because I wanted to suggest a more active participation in our lives than that of being merely survivors. I do not use the word "survivor" in describing myself because I feel like it connotes a human being who is a bystander, besieged by forces out of their control, or in this case a pawn in the disease process and thoroughly victimized by it as though the individual is not a part of, indeed one with nature.
When I first saw the term "survivor," about 25 years ago, I did not realize it applied to me. Eventually it dawned on me that I did indeed fit into that category… and then I confess that I did find it somewhat comforting. I saw that the word "survivor" gave me some solace because it took away my responsibility in the matter of having had Hodgkin’s Lymphoma; including the shame of being imperfect - a feeling that I had lived with since my diagnosis. I was an adolescent, still very unsure of my place in the world. I had trouble with the term “survivor” because it clashed with my life’s work as I had come to understand it.
The life challenge, as I see it, is to find out what it means to really take responsibility for my life, for all of it, the crappy childhood, the difficulties in school, the rocky relationships, and for having had Hodgkin’s Lymphoma. I remember thinking in some of the worst of times, “Surely God would not have given me this challenge if it were not mine to do, if I wasn't up to it.”
The expression I like to use is "beyond survivorship." It is the recognition of myself as being involved in the dance of my own evolution, as part of nature, not merely at the effect of it.
Since the age of 18, 58 years ago, I have sought to make sense of what’s been happening to me, to my body: “Why me, Why Hodgkin lymphoma, Will these inexplicable difficulties with my body ever stop?”
For five years I was treated for Hodgkin lymphoma Stage IIIB by way of a splenectomy, mediastinal tumor seeking operation, cobalt gamma radiation and X-ray therapies. Within months after the last operation and a course of X-ray treatments, I had to visit hospital emergency departments with severe abdominal pain. The frequency of those visits varied from weekly or every few weeks, or even to months if I was on a good run, and has continued for over 50 years.
My presenting symptoms often baffled the attending ER physicians. I was subjected to varying individual attitudes about my condition, including being labeled a hypochondriac and a junkie. Eventually my condition was recognized as being due to adhesions which had resulted in one bowel obstruction after another.
Over the years I often tried being stoic. I learned to meditate through the pain, which frequently lasted for days on end. Sometimes meditation worked and the pain passed. But there were many times when I could not bear the pain and suffering any longer, when I thought my intestines were going to explode. I would go to an ER and ask for some Demerol/Vistaril, or some morphine, and in recent years, Dilaudid. I managed to have only a few operations to relieve adhesions in the small bowel. My body doesn’t respond well to being cut open. I stopped allowing surgical interventions because they just created more problems.
I now realize that through all those episodes of small bowel obstructions and other ailments common to Hodgkin's survivors (endocarditis, aortic valve replacement, headaches caused by radiation fibrosis, sterilization, congestive heart failure, hypothyroidism, chronic kidney disease, and spinal problems from stem to stern), in seemingly random order, all 7 stages of the grief cycle as described by Kubler-Ross.
For reference I cite them here: Shock, Denial, Guilt, Anger, Bargaining, Depression, Acceptance.
As important as it may be to go through each stage of the grief cycle, it is of paramount importance not to get stuck in any one stage, for all stages are in the same game -- the belief that something is being done to me; again a victim of circumstances rather than a participant in the grand dance.
I did get stuck in various stages, most notably in guilt, in anger, and in the victimhood of depression. It has been a lifelong process that has forced the evolution of my soul in this lifetime beyond anything I would have willingly or could have consciously designed for myself. From my current perspective, getting sick was surely a gift of grace that was offered so that I could rise above the all too common belief that all I am is a body/mind put on this planet to endure endless suffering and loss. This gift of grace pointed me to the real work of being a human being. The work entailed inquiring deeply into my past, my conditioning, my beliefs and my very idea of myself as a body/mind. I discovered what I always knew to be true in a deeper, more subtle part of my being- that I must be something more than what was readily apparent, something more than a mere body/mind. That “something more” has been watching this body/mind as it goes through all its seemingly endless cycles of suffering, recovery, pain, fear, elation, depression, etcetera.
This understanding allows me to see a much larger picture of what I am as a human being; it's the dawning reality that I am consciousness using a body as a vehicle of expression on this planet. Suddenly the whole frame of reference shifts from one of a very local personal perspective to one of much greater scale that has no boundaries. I begin to recognize myself as the formless witness of all that is happening in this life. Even the many times I had been writhing in pain and hoping to die... for now I recall that someone, something, some essence was always watching even during the worst of the writhing, there was always a witness. The Witness has not gone anywhere, it watches even now as I write about it, it does not get involved, it just objectively observes.
It is the norms of our cultural conditioning that tell us to put our faith in the medical model. We confine our thinking about ourselves to the idea that we are body/minds who are victims and thus subjected to all the suffering that life offers, but not able to realize there can be pain without suffering. Suffering is optional, but it seems like the only possibility when we believe we are these bodies. As I have said, we are not merely these bodies that are probed and manipulated, drugged, operated upon, irradiated. No, we are the ones witnessing these bodies as they go through the various hoops. We are the "witness". WE are who is watching every single second of every single day all the vicissitudes of being in a body".