“I’d kill myself if I could attend my own funeral.”
The speaker is a seventy-five year old man, a lawyer who specializes in wills and estates, always peculiar, now semi-retired with a sterling professional reputation as someone who can craft a complex trust so that it can not be broken. He is from an old family, himself the beneficiary of rich trusts, but has made a fair amount of money by his own labors in the arcane province of wills and estates.
“The reason that I would like to attend my own funeral is that I would be the center of attention while yet remaining exempt from the obligation to exert any effort. I would be glad even to pretend that I wasn’t there. In life, if you want to be the center of attention it requires such a lot of work. It saps your energy to arrange your self-presentation just so after having compiled extensive intelligence concerning the tastes and distastes of those you wish to arrange in circles around you. It has always been beyond me. I have tried but I never lasted more than a few weeks. I can’t imagine running for office. I’m simply not robust. I’m not even sure I could serve as a hereditary monarch unless I were permitted to remain out of sight for decades at a time.”
He has shown me pictures of himself from decades gone by. Tall and thin with an air of elegance, he is a handsome man in these photographs, perhaps with just a hint of fragility. Long nose, long thin fingers, pale blue eyes – in each of these photographs he seems to be impersonating himself slightly differently, as if he can not quite make up his mind. The pictures have both an eloquence and something that can easily be called beauty . He is in the pictures simultaneously a beautiful object and a beautiful subject
Well past seventy, he looks a bit gaunt and stooped, with his cheek bones more prominent. Or should I say “unwell” past seventy? If the law has been his primary career, then being ill has been a second career that has given his first career a serious run for supremacy.
“I don’t like doctors. I’m afraid of them,” he says. “You go to them because you are suffering. You go with the expectation that they will deploy actual intellectual energy and practical discernment in pursuit of diagnosis and treatment of your specific ailment. You expect them to wrestle with your ailment and to stay with the match even if it causes them great discomfort. After all, you, the patient can not quit the ring. You have no choice but to stay the course. But doctors rarely, if ever, engage in this way. They are more flighty than analytic, more vain than engaged.”
I do not observe to him and have not observed to him in the long time of our work together either that I am a doctor or that his relationship with doctors seems at the very least to be a love/hate relationship. I often wonder whether he includes me in the tribe of doctors which he so excoriates or grants me some anomalous status just outside the borders.
“I hurt. I especially hurt in my feet and legs, but I also have abdominal pains, sometimes so severe as to make me wonder whether I have pieces of necrotic bowel. The doctors run tests, find nothing and then seem content as if they have pronounced some priestly blessing for which I should be grateful. I go on hurting just as I did before the useless exercise. I’m dizzy, not all the time but enough so that I’m always worried about being dizzy. I can hardly walk. I’m becoming weaker all the time. I hardly go out any more. I find it harder and harder to work and, if the truth be told, my work doesn’t have the distinction it once had. People retain me now not so much for my actual performance, but for my reputation, which has always seemed to me exaggerated. Perhaps I still deal with complexity just a little bit better than other people, but this is nothing to get excited about, given what a pathetic species we are.
“The doctors tell me that all my tests are within normal limits and then seem offended when I tell them that all that means is that they haven’t run the right tests.
How I feel is not within normal limits. How I struggle through the day and how I suffer through the nights, barely sleeping three or four hours and plagued by nightmares that color the entire next day, is not normal. I am not within normal
limits. I can not get it through the blockheads’ thick skulls that they have not been retained to care for my laboratory tests or scans or tissue biopsies, but rather to care for me. Actually, over the years of my involvement with medicine I have known two or three doctors who have been frank with me that they had no idea what was going on with me and that they were very bothered about this fact, but had no clear idea how to proceed. These are the princes of the profession, the ones who admit failure and are tormented by it.”
This man is not married, has never been married or had any interest in being married, let alone in having children. For him other people represent an unnecessary burden. He says that other people might feel differently but then they did not have the pleasure of being raised by his parents. He feels there should be a licensing system for having children and that, were there such a system properly operated, then the problem of overpopulation would be well on the way to a solution. He is very fond of dogs and horses, the preferred companions of his youth
“The job of a doctor is to figure out what is wrong with the patient and to fix it.
Now I have had my appendix taken out, my gall bladder removed, four melanomas excised, coronary artery bypass surgery, although I am not so sure that was indicated. I have also had treatment for a host (I almost slipped and said ‘hoax’) of medical conditions: hypothyroidism, hyperthyroidism, Addison’s disease, hypertension, diabetes, even an exotic tropical fungus which normally appears
only in those who are severely immunologically compromised. I can’t tell you how many times I’ve been worked up for auto-immune diseases, as if I were turning against myself. But I have never been relieved of my sufferings. Nor, unlike so many, do I believe that there is any aesthetic, ethical or moral privilege that derives from suffering.”
This gentleman, with a lawyer’s diligence and respect for documentation, has made an exhaustive collection of his medical records over a bit more than half a century as if each EKG, each lab report, each reading of an X-ray, ultrasound, CAT scan, ERCP, MRI, EEG and so forth were a tribute to him or, even beyond that, a part of himself, much too valuable to allow to be dispersed and destroyed. He says that he has two full filing cabinets devoted only to the medical records of which he is both the original cause and the curator. I have in my possession more than nine hundred forty pages selected from these materials. It is important to him that I am willing to read what he brings me. It is at once tedious and fascinating, illustrating the best and worst of medicine in a maelstrom of confusion. A medical anthropologist
or medical sociologist could produce an instructive and useful volume based on nothing but these records.
“I’ve been thinking about my situation although my ability to think is significantly diminished from what it once was when I was younger and captivated by, for example, the history of the Ottoman Empire, of which I remember only a small amount. I was at Massachusetts General Hospital with weakness, variable abdominal pain, nausea and migratory joint pains. This would have been in the middle seventies. My attending was a man named Frank Duffy. He was honest with me and told me that he had no idea what was wrong with me, except that it was a real bother. He said hat he hoped and even expected it would go away without ever being diagnosed, like a man who comes to town, commits a crime and then fades away, leaving no trace.
“He kept coming back in he evenings with no clear purpose except to converse with me, as if he were genuinely interested in knowing what sort of a creature I was. Maybe, if he couldn’t diagnose my ailment, he was at least trying to arrive at some diagnosis of who I was. One evening, he told me that his favorite hour of the week was the “Morbidity And Mortality Conference” where, in particular, the cases of patients who had died and undergone autopsies were presented. Duffy reveled in this conference because he felt it set a standard that could help medicine to improve.
More than half the cases died of something that had not even been considered during their clinical course. So, Duffy remarked, we doctors have colonized only a small piece of the vast continent of man’s illness. Doctors should be humble and aspire, not make proud and excessive claims.”
What my patient does at this juncture in his narrative is idiosyncratic and telling.
He almost smiles, half closes his eyes and seems to absent himself not only from me
and my office, but also from himself. He very quietly goes away and then comes back without any major use of his musculature.
‘I think Duffy was apologizing to me, not directly, but in a roundabout way that was as realistic as it was severe. I imagine Duffy, like most of the best people I have known, is dead now. He must have been at least fifty at the time of that admission to MGH. But I suppose he has a certain life as a peripatetic shade in my mind. In any case, it is he who has inspired my recent ruminations. What I need is an autopsy, only I want to be there to see it. I’m convinced that I’m one of Duffy’s cases, not that there is any particular distinction. What is wrong with me is something that no one has considered, not even myself. An autopsy – a living autopsy – would overcome the opacity and mute obstinacy of the flesh. I did a PubMed search and it returned no citations. I’m surprised no one has thought of this before me. It makes complete sense.”
He says this without the least trace of irony and looks at me, as if I were in a position to say or do anything. I am thinking that it all has to do with an insatiable appetite for attention, a tragic flaw but very human