‘And I Only Am Escaped Alone to Tell Thee’: A Patient’s Experience With Excruciating Pain and Redemption

The title for this article is taken from the title of the epilogue of the novel Moby-Dick, whose author, Herman Melville, had taken it from the Book of Job in the King James Bible. Like the fictional protagonist of Melville’s novel, and the messengers who informed the biblical patriarch of his great loss, I too have a message for the readers, borne of personal experience—one of excruciating pain, loss, rescue, and redemption.
 
It is my sincere hope that my story will help those who are helping others through similar experiences within our current health care system, a system that I believe is evolving into a technocracy¹—technically advanced, but at times tragically unaware of the life that is associated with the disease, illness or injury that is being treated—and I only am escaped alone to tell thee.
 
My background in medicine has taken a circuitous route. During a career in the pharmaceutical industry, I began an academic venture culminating in a PhD in medical anthropology, a sub-specialty of cultural anthropology. My studies and subsequent research concentrated on the culture of American biomedicine—specifically biomedicine’s epistemology—how, why, and the manner in which physicians learn their art. Over a 10-year period, I interviewed physicians, medical students, medical school administrators, medical educators, medical historians, and academic researchers, as well as many of their family members.¹
 
I felt comfortable within the medical fictive family and confident that I was able to communicate with them effectively, so when I injured my leg while cleaning out the garage, and was taken by my wife to the local emergency room, I was entering what I thought to be familiar territory. For a time, it was familiar territory. 

Initial Treatment

My initial post-ER medical contact was with my family physician who examined the wound carefully, taking note of the 13 sutures that were used to close the irregular puncture of the outside of the left leg, just below the knee. Since the sutures were tenuous at best, my physician and his nurse opted to remove them in 3 phases in order to avoid any additional tearing of an already challenged dermis. My physician prescribed an antibiotic as prophylaxis against any opportunistic infections. I returned home and, the next day, to work, giving little thought to the injury.
 
My physician visits took place weekly for the removal of the sutures, but the wound itself, while closed along the suture lines, was increasing in size. My physician’s diagnosis was that of an underlying infection. The antibiotic that I was taking was obviously not working, so cultures were taken. Streptococcus B was isolated in the culture and the appropriate antibiotic was prescribed. The wound still continued to grow and spread inferior to the original site. I continued to see my physician weekly for observation and wound dressing. No alarms sounded to my physician that gave him reason to address the fact that the eschar related to the original wound was spreading and spreading rapidly.
 
One evening, approximately two weeks after the original injury, the wound began to bleed profusely. When the bandage was removed a stream of blood shot across the room, revealing additional lesions, continuing in their downward path. I was taken to the ER and eventually admitted to the local hospital for observation. During this time, a local internist who treated wounds but was not formally trained in wound care attempted to dress the wound using petrolatum infused gauze. The incidents of bleeding continued; the lesions spread. After a terse discussion with a charge nurse who wanted to transfer me to the rehab hospital with which the local physician group had a financial interest, I was discharged from the hospital with no additional diagnosis or treatment plan.
 
Since this appeared to me to be a dermatological issue, I thought that a dermatologist should be consulted. I was vaguely familiar with the condition pyoderma gangrenosum and when I looked online for photographs, I was quite sure that this was exactly what I had. The dermatologist agreed, this indeed looked like pyoderma gangrenosum. I was referred to an infusion clinic and given four infusions of infliximab in accordance with the accepted protocol, but to no avail.
 
It was at this point, approximately 2 months post-injury, that I sought the help of a wound care specialist who was affiliated with a highly rated health care system that had outlets throughout the community. The physician, whose primary specialty was cardiovascular surgery, examined the wound, noted its progression from the daily photographs that my wife had been taking, and concluded that the wound had an underlying vascular component. This diagnosis would lead to lower extremity angiography, an experimental implant, 2 surgical debridements, and numerous trials of specialized wound dressings. I had been hospitalized within that health care system for each surgical debridement.
 
My confidence in American biomedical superiority was waning. Could alternative therapies such as acupuncture, herbal therapy, or moxibustion² be effective? The short answer, based on personal experience, significant financial investment, and a very memorable infliction of pain is, no.
 
I resumed weekly appointments with the wound care specialist, which consisted of the physician looking at the ever-expanding area of the wound, commenting that the underlying tissue looked red and vascular, which was “what we want,” and asking me what my wife and I had planned for the weekend.
 
Somehow propriety restrained me from replying in a manner that the question deserved. “Not much,” I replied, when I wanted to say, “Are you blind? I have gaping holes in my legs and I’m in pain 24 hours a day, 7 days a week. What do you think I’m going to do? Go water skiing?”
 
What had appeared as a small lesion on my previously unaffected right leg was now growing significantly. The wound care specialist had no idea why a wound that began in my left leg would now manifest itself in the unaffected leg.

Indescribable Pain

The pain that I was now experiencing was indescribable. When I elevated my legs, the pain grew worse. The only way that I could lie in bed was to lie across the bed with my legs draped over the side. My legs were oozing enormous amounts of fluid. My wife was putting up to 30 bath towels under my feet per day just to absorb the liquid.
 
My sleep cycle suffered dramatically during this time. The level of pain became so great that I remained awake until I physically could bear no more and then fell unconscious. This typically occurred between hours 20 and 22 of a 24-hour period. The 2-hour periods of rest came to an end when the pain rose to a level that awakened me. The towels beneath my feet were soaked with fluid that was seeping from the wounds—my poor wife gathering them and washing them as quickly as possible, all the while listening to my cries of agony, knowing there was nothing she could do.
 
Hospitalizations became routine. I would begin to bleed, then be taken to the nearest emergency room, admitted, assigned to a hospitalist, given IV antibiotics (usually vancomycin), given heparin to protect me from thromboembolic events, which caused the wound to bleed more, all this while still writhing in pain. When I asked for pain medication, I was given tramadol or codeine in insufficient amounts. When I told the nurses that the pain was still significant, I was told that they would request a pain specialist. The pain specialist typically arrived two days later. I was usually discharged after five days with a prescription for tramadol.
 
This cycle repeated through 14 hospitalizations. When I requested stronger pain medication from my wound care specialist, I was informed that he didn’t prescribe pain medication and that I should see my primary care physician. When I called my primary care physician, I was told that he didn’t prescribe pain medication and that I should see a pain specialist.
 
It was during my 12th hospitalization for another bleeding episode that a new hospitalist recommended that I see a different wound specialist, Caroline Fife, MD. Upon discharge I made my first appointment with her. Her prognosis, as I recall, was border-line dismal. “I think you really need to get downtown to the medical center, get a proper diagnosis, begin a treatment regimen for the underlying disease so that I can treat your wounds more effectively. I can take care of your boo-boos if I just know what’s causing them.”
 
It sounded reasonable, but in the meantime, she treated my wounds, and gave me the one medication that had been lacking throughout my treatment—hope.
 
Eventually I was taken to the medical center hospital that was affiliated with my health care system. It was also affiliated with one of the medical schools in my community. Since I was now among the “best of the best,” I felt certain that I would be given a diagnosis, put on a treatment regimen, and be healed. This is what I thought; this is what I believed.

Never Become ‘an Interesting Case’

I rarely give advice, but one bit of advice that I feel reasonably confident in giving is this: never, under any circumstances, become “an interesting case.”
 
If you are in a university-affiliated teaching hospital (which I was), and present with an indefinite diagnosis (which I did), you run the risk of becoming an “interesting case.” As such, you are a hybrid, somewhere between being a human with a disease, illness, or injury, and an educational tool. My value as a tool far surpassed my medical need. As a professor of anthropology, I routinely taught my students that a tool was “an intermediate object that enabled an individual or group to accomplish a goal.” My disease, while interesting, became an artifact, an expected finding that was a necessary condition in my classification as “an interesting case,” something that had the potential to create a series of teachable moments—making me, the patient, somewhat superfluous.
 
Enter the various bands of the Tribe of Asclepius, those who were assigned to my case—academic physicians in a tertiary care hospital who sought to gain insight within the bounds of their particular sub-specialties by means of a thorough examination of the patient before them—me. They would, I was informed by my hospitalist—that rare breed of physician who saw only hospitalized patients, thereby missing the bulk of the ordeal that delivered me into his or her care—arrive in groups based on, but not limited to Dermatology, Infectious Disease, Internal Medicine, General Medicine, Family Medicine, Rheumatology, Allergy and Immunology, Vascular Surgery and General Surgery. Each of these bands was composed of a senior physician, an attending physician, fellows (when applicable), house staff, and the occasional PGY-4. Each group would arrive, ask for a volunteer to undress my wounds, and then be led by a senior physician on a tour of the lesions, carefully noting the salient characteristics of each opening of the skin. A group discussion would then be held regarding the various diagnostic possibilities but still no definitive diagnosis—only academic musings.
 
I was routinely asked a series of questions regarding my wounds that included a brief history of the injury that led to my current situation, my knowledge of my general condition, the treatment modalities that had been attempted thus far, the results of these treatment regimens, and my expectations related to future treatment and outcomes.
 
For example, when Dermatology made their initial contact, I was questioned extensively regarding the primary diagnosis of pyoderma gangrenosum by the referral dermatologist. How was the diagnosis determined? What were the initial symptoms? What medications were employed? Did the physician use infliximab? If so, did I remember the dose?
 
Internal Medicine, General Medicine, and Family Medicine all asked questions related to medical management of my wounds. Vascular Surgery was focused on stents—had stenting been attempted? If so, which leg? What was the outcome?
 
General Surgery seemed less inquisitive regarding history and treatment. They examined my wounds, noted the progression from one hospitalization to the next, and left the room. They must have known intuitively that theirs would be the specialty that would address the issues related to my disease—sooner or later.
 
After the second round of group inspections, I began to ask the physicians questions—not about me—about them. I explained that I was a medical anthropologist, that I studied physicians as a cultural entity, and was professionally curious regarding 1) What they had initially learned from examining me, 2) What their expectations were of enhancing their current level of knowledge, 3) When did they receive copies of my physician notes or chart, 4) Had they read them prior to seeing me, 5) Were there any additional questions that they wished to ask, and 6) What was their differential diagnosis and why.
 
They all appeared to be amused that a patient would be quizzing them. Interestingly, none of these physicians asked about my pain, now referred to by many as “the fifth vital sign.” Admittedly, when they saw me, I was usually on IV morphine, not so upon discharge.

'Longer Than …'

During the 14 months of my illness that culminated in the amputation of both legs above the knee, my wife had transformed herself into a medical research machine. After having lost hope in the medical system that was supposed to heal me, she set about searching to answer the question: What else could it be? She searched every possibility, downloaded and printed every scholarly article for my perusal, familiarized herself with the language and vocabulary of medicine, so much so that I was asked on numerous occasions by physicians if she was a medical professional—and not, I might add, in a pejorative manner.
 
Two weeks prior to my surgery, she printed out an article on a rare type of vasculitis known as cutaneous polyarteritis nodosa (CPAN). During my next hospitalization, which occurred within days of her printing out the article, she discussed it with a senior rheumatologist assigned to my case. He concurred that, based on my symptomology and confirmed by my wife’s literature search, the diagnosis must be CPAN.
 
One week later I was in the hospital for the 16th time, this time septic; the wounds were attempting to murder me. I was delirious, so much so that my wife was called on by the surgeon to decide my fate. Another word of advice: In a life-or-death situation, make certain of the fact that the person in charge of the decision loves you. In my case, the decision was made by my wife, my girlfriend, and my first genuine date—the Senior Prom in 1972—all in one person. Longer than there’ve been stars up in the heavens, I’ve been in love with you.³

A Misanthropic Anthropologist

I’m not actually misanthropic—at least not most of the time. I am, however, seriously concerned about the direction in which I see this tribe of Asclepius headed. I’m also cautiously optimistic for the remnant—those countercultural contrarians who learned from both Hippocrates and Osler that it is more important to know the individual who has the disease than the disease the individual has. No physician, save Dr. Fife, ever asked about my pain. Had they asked, I would have told them. They would have been faced with the dilemma of either doing something about it or ignoring a symptom. No one asked.
 
I hope for a rebirth of medicine, a rebirth characterized by what Dr. Richard Selzer hoped for in his book, Letters to a Young Doctor:⁴
 

I send as your graduation present my father’s old textbook of physical diagnosis. It was published in 1918. Lifted yesterday from a trunk in the attic it is still faintly redolent of formaldehyde, and stained with Heaven only knows what ancient liquid. I love my old books—Longfellow, Virgil, Romeo and Juliet and Moby-Dick—but I love this Textbook of Physical Diagnosis more. I can think of no better thing to give you as a reminder that all of Medicine is a continuum of which you are now a part. Within you is the gesture of the prehistoric surgeon who trephined his neighbor’s skull on the floor of a cave. Within you, the poultice of cool mud applied to a burn by an old African woman. The work of all doctors before you is in your blood. Yours will enter the veins of whosoever comes after you.

Today’s medical system must take care not to devolve into what Lewis Thomas, the former President of Memorial Sloan-Kettering Institute once wrote: “If I were a medical student or an intern, just getting ready to begin … I would be apprehensive that my real job, caring for sick people, might soon be taken away, leaving one with the quite different occupation of looking after machines.”⁵
 
A little over a year ago I made an appointment to see my dermatologist, one who had followed my case from the point at which my disease grew worse. This time my only complaint was what appeared to me to be a mild dermatitis of the upper left bicep. He concurred and I received a prescription, counseling on what to do if the rash worsened, and a comment that took me somewhat by surprise, but not entirely. As I was leaving my dermatologist, a good-natured, gregarious type, he said, “You know, when I saw you last, I never expected to see you again. I thought you would be dead by now. I’m truly amazed that you survived.”
 
So am I. I did indeed survive.
 
Sir William Osler once opined that medicine was not a business and could never be one because we simply could not treat our fellow human beings as one would treat a load of corn or coal. Sir William, you would be disappointed, and I only am escaped alone to tell thee.
 
Richard E. Maddy, PhD, is a native of Waco, Texas and lives near Houston. His 30-year career in the pharmaceutical industry included positions as Regional Scientific Director and Field Medical Director. Dr. Maddy also taught both physical and cultural anthropology at the university level. He holds an undergraduate degree from Baylor University, as well as Masters and PhD degrees from Southern Methodist University.

Click here to download a PDF of this article.

References
 
1. Maddy RE. Osler And The iPad: An Anthropological Examination Of The Evolution Of American Biomedical Epistemology From Its Colonial Beginnings To Its Technologically-driven Present. Ph.D. Dissertation, 2013.
2. According to Edzard Ernst, a noted researcher in alternative medicine, moxibustion is defined as a traditional Chinese medicinal therapy which consists of burning dried mugwort on particular points on the body. It plays an important role in the traditional medical systems of China, Tibet, Japan, Korea, Vietnam, and Mongolia. Suppliers usually age the mugwort and grind it up to a fluff; practitioners burn the fluff or process it further into a cigar-shaped stick. They can use it indirectly, with acupuncture needles, or burn it on the patient's skin. Moxibustion is promoted as a treatment for a wide variety of conditions, but its use is not backed by good evidence and it carries a risk of adverse events. (Ernst, Edzard (2019). Alternative Medicine—A Critical Assessment of 150 Modalities. Springer. pp. 182–183). 
3. Dan Fogelberg, "Longer."
4. Selzer R. Letters to a Young Doctor. New York, Simon and Schuster, 1982.
5. Thomas L. The Youngest Science: Notes of a Medical Watcher. New York Viking Press, 1983.