Newsletter #5: Finding the right diagnosis…a personal journey

Least Favorite Saying:
“I can feel your pain.”

Favorite Saying:
“I know what you have and I can fix it!”

I hope that I have never said “I feel your pain” to anyone. While it has always been my intention to be compassionate and empathize with my patients, it seems to me that it is presumptuous to imagine that I can truly imagine what another human being is going through. Today I am going to get personal, and describe my own recent bout with illness, in the hope that others can learn from that experience.

In late May, I taught a seminar at the New England College of Osteopathy with my dear friend, Jeff Greenfield. My wife and I decided to spend a few extra days in Portland, Maine, and we thoroughly enjoyed long walks (5-10 miles a day), ferries to explore the beautiful islands surrounding Portland, and great food. I felt healthy and well.

Within a week of our return home, I developed the onset of rather severe rectal pain and daily fevers. I could not get warm, and shaking chills and lassitude took over. I lost my appetite (which for a “foodie” is astonishing) and over the next 6 weeks, lost 15-20 pounds. Odd aches and pains moved around my body. I could not sit down for more than 15-30 minutes without having to lie down. As this progressed, I not only felt awful, but I became frightened because on some level I knew that I was very sick, and had no idea what was happening to me. I consulted with many physicians who provided me with all kinds of healing suggestions including supplements, herbs, and homeopathics but I kept getting worse. Although I tried, I am not sure I could convey properly to anyone how bad I felt. Words were not sufficient to express the depth of my misery.

Finally, one Sunday afternoon I recognized that I could not go on this way and my wife drove me to the Emergency Room at Howard Memorial Hospital (Adventist) in Willits. The staff were wonderful, caring and efficient. My white blood count was 13,000, and an excellent surgeon found that I had a rectal abscess and gave me intravenous antibiotics that night and sent me home on oral antibiotics with the hope that this would control the infection.

Over the course of the next week, the fevers continued and I did not improve, so the next Sunday afternoon we went back to the ER when I finally acknowledged (with the help of one of my medical colleagues) that I was septic (had a systemic infection) and needed IV antibiotics. I was given those over the next 5 days, and my surgeon examined me carefully but could not find the precise source of the purulent material draining into my rectum. The IV antibiotics helped greatly to relieve the fevers and I was referred to a wonderful colorectal surgeon in San Francisco, Dr. Phil Chung, who after examining me said the most magical words I had heard in six weeks: “I know what you have and I can fix it.” Two days later, he took me back to surgery and took care of my infected rectal fistula.

So let me paint a picture for you: this was the sickest I have been in my entire life. I was dehydrated, weak as a kitten, could not sit, walking down the hall was a chore, and what was really upsetting is that for six weeks I had excellent medical care, but no one was sure about where, exactly this infection was coming from.

I now experienced what so many of my patients have gone through, and for much longer periods of time. Feeling profoundly ill, seeing many doctors, getting test after test, and yet not having a clear diagnosis is a frightening place to exist. You know, at the core of your being, that you are really sick, and no one can put a finger on it. I know as well as anyone that without a clear diagnosis, there can be no clear treatment. What a horrible experience. So finally, to hear someone exclaim with confidence: “I know what you have and I can fix it” is profoundly moving.

I had my surgery a little over a week ago, and my improvement has been dramatic. I can barely believe that I can sit, again, walk a mile or more every day, have regained my appetite, am no longer shaky or weak, and most important, I feel like “Neil” again. Once again, words are inadequate to describe how grateful I am that I have rejoined the human race. At my worst, in survival mode, I could see how worried my wife was about how separated I had become from everything and everyone. Coming out of that experience I appreciate, at an even deeper level, how incredibly wonderful it is to be back into the flow of life again.

This experience underscores for me some understandings that I hope will resonate with readers of this column, be they patients or health care providers. When you feel ill, realize that you may not be able to convey, with words, how bad you feel, but do not let what others think alter your own realization of how sick you are. Keep trying to find an answer, no matter how many times you are told by medical practitioners that they do not know what is wrong with you. Keep looking: someone will have an answer.

Let me share with you one other observation without any understanding of what it means. Many years ago, attending an acupuncture conference, I sat next to a veterinarian from Cornell and he repeatedly notedthat when he could not figure out what was wrong with a dog or cat, he would request the pet owner’s medical records, and with surprising frequency, the pet and the owner often had the same condition. My laborador retriever, Jessie, this spring, developed a rectal abscess which our vet told us was highly unusual in labs. On the day that I went into the ER, my other dog, Kai, stopped eating and developed vertigo. Energetically, what does this mean, exactly? I don’t know, but I am not one to believe in coincidences.

So, dear readers, at this point I believe I am on the mend. I am incredibly grateful to the loving care given to me by my wife and friends, and for the outpouring of love and prayers I have received throughout this process. I have always been appreciative of my health and my ability to function at a high level as I have gotten older. My appreciation of this has increased dramatically and for those of you who have been ill, and regained your health, you know what I am talking about. My heart overflows with gratitude for the ability to experience how wonderful this world can be, and I hope that I can hold onto this forever.