More Musings on My Mortality 3-11-11

Anderson, South Carolina

Much of my childhood was lost to macabre imaginations about death; often giving hours to wondering what the last second of life would feel like; the sense of ‘pressure’ that would come with final extinction. I had no shortage of nightmarish dreams depicting my final seconds. A powerful awareness of death often dominated my thoughts, driving away the usual childhood preoccupations of softball, tree houses, go-carts, and girls. Childhood was often bleak in this respect.

When one is born to an alcoholic who is addicted to all manner of psychotropic drugs, there seems to be little room for keeping track of box scores in Little League baseball. Untreated alcoholism in pregnant women results in problematic pregnancies often ending in still birth or premature infant death. I lost no less than ten siblings to Fetal Alcohol Syndrome.

A very strange psychiatric disorder drives some adults, especially mothers, to fulfill an excessive need for attention and validation by taking on a martyr role. By becoming a ‘victim’ of severely ill children, hapless mothers can extract a morose sympathy from those around them, seeking condolences for their station in life taking care of severely ill children. These victims are even seen as super-heroes in our hyper-medicalized culture. Munchhausen’s Syndrome will often drive mothers to create illness in other-wise perfectly healthy children, this illness providing a gateway for the attentions of professional care givers, medical personnel, and especially physicians. A good part of my childhood was spent in physician offices and hospitals, often waiting for biopsy results.

I have known a woman personally for twenty years who spent decades of hard time in the federal penitentiary for killing two of her children by inducing illness in them as an outworking of un-mitigated Munchhausen Syndrome. The disorder is very real and produces a torturous psychological landscape that is hard to conceive unless one has traversed it personally.

Mercifully, over the years, the force and power of life eventually supplanted my early preoccupations and obsession with illness and death, giving way to an enchantment with the stunning physical world around us. With camera in hand, ‘collecting’ the wonders of life on earth, death is most often far away from my consciousness. I’m truly living in the moment, no longer dying in an uncertain future. Working a twelve-step recovery program with alcoholics and addicts has further boosted my ability to live in the moment; life is now often large and wondrous.

Even in a fulfilling life with many grand options, clouds do scud across my sky; leaving cold breezy shadows on the terrain of my consciousness. One of the things I’ve wondered about at times is the affective sensibility I might expect at the loss of siblings and/or their challenges with catastrophic illness. At New Year’s I found myself in a cold wind with the advent of catastrophic cancer in both of my surviving siblings, one of whom is an identical twin. Both of them have undergone extensive surgery and have been forced to quickly develop expert knowledge on several kinds of neoplastic monsters. I feel a bit like a deer caught in the glare of overly bright halogen driving lamps. One of my brothers recently sent me a family tree with causes of death, deepening the depth of my present shadow considerably.

At this point I would much prefer re-creating my lost childhood and staying entranced with the visual enchantment around me. Alas, life does not always give us choices. As a dear friend in recovery is inclined to say, “The universe does not give me a vote in the matter, all I have is a choice in how I respond.” What I presently have to consider is whether I want to again become a professional patient, becoming expert on neoplastic illness, my own case manager, filling my head with possibilities and treatment options.

Having been to medical school and employed in teaching hospitals most of my working life, it’s very easy to fill my head in an instant with morbid possibilities. As a former Munchhausen proxy, it’s even easier to find the worst of these. I have to consider if I even want to continue seeking diagnostic resources, wandering if I really want to give my life back over to the same nightmares to which I lost my childhood. Is death something I really want to make a heroic fight against? Would I prefer to simply embrace the natural course of life and its transition to another form, or do I wish to give all my time, thoughts, and imaginations to becoming a professional patient once again? Been there, done that; even have the T-shirt.

In the present era we have options to consider which were not available until recently. Radiation, chemotherapy, and radical surgery have been treatment options for only a few decades. Because they are available and might extend quality of life significantly does not mean I should blindly embrace them. Perhaps an informed and empowered evaluation of all options is in order. Perhaps doing nothing is valid for some people. One might actually find out what a disease course with only palliative care looks like and decide it’s a better one than one of radical interventions producing a challenging year or two of life as a professional patient. Amazingly, I have known a number of individuals who opted out of radical ‘conventional’ treatment and are alive and well decades later. Some after being told to go home and do their paperwork because conventional options were of no value decided to seek alternatives. They too are doing well decades later.

In a culture that’s made the medical-industrial complex its largest and most profitable economic sector, in a culture that has the world’s highest fear of death, it’s little short of heresy to suggest one consider doing nothing, giving into a natural course of events. I see many around me suffering profoundly with conventional treatment. Working in twelve teaching hospitals gave me no shortage of evidence of how it ends for many.

Perhaps the most empowering thing I can do about my own health is to become willing to let go of it without a fight, knowing that life has its natural end point. Paradoxically, I might then find I have even more strength to make what is then a truly empowered choice to embrace big treatment for a large challenge. I might more easily submit myself to surgery, chemo, and radiation knowing it’s my choice to not do so if I so decide. I don’t have a choice about what life throws at me but I do have a choice about how I respond. In his celebrated Man’s Search for Meaning, Victor Frankl demonstrated the astounding empowerment possible in spite of the most heinous circumstances.

I can only hope my brothers realize they have real choices. So far their medical choices have worked out. They have access to expert knowledge, financial assets, and relational resources out of reach for most. If a time comes when a lack of resources and neoplastic realities make choices more problematic, I can only hope they have already learned how to let go of life without a fight. I can only pray I am learning to do this as I look in the over-bright glare of headlights. It might make my future choices easier, a lot easier.


He will swallow up death for all time, and the Lord God will wipe tears away from all faces, and He will remove the reproach of His people from all the earth; For the Lord has spoken and it will be said in that day, “Behold this is our God for whom we have waited that He might save us. This is the Lord for whom we have waited; Let us rejoice and be glad in His salvation.”