I am going to Dr. M.P. at the Department of Infectious Diseases today.
He is an marvelous clinician and an exceptional human being. A mensch. I ran into him about a year ago in the dollar store and although I did not want to bother him while he was living his private life, I thought it behooved me to mention to him that we would be discussing hook worm when we were to meet a few weeks hence.
I got to his office armed with a pile of scientific literature, courtesy of Jasper, but Dr. M.P. was flummoxed.
“I thought you meant you had hook worm that you needed to be treated for.”
Yea, well, see how I am.
The difference between doctors and patients, and the reason there is often such an emotional disconnect there, is that Doctors consider themselves the expert on your disease. And they are; they have worked long and hard to become so. But they do not often understand that you are also an expert on your disease, in that you are living it every day. You understand its moods and vagaries. When all the literature says do not eat lettuce, for example, you begin to understand that you feel better if you eat just a little bit of lettuce. Some doctors can not accept this, they have the training, they paid their dues. They do not fathom the extent to which you are paying your dues every day.
M.P. is not one of those, he takes the patients role in the disease seriously. Never the less, I expect that he too will have trouble wrapping his mind around the hook worms. For what is most easily forgotten is that it takes an extraordinary amount of bravery to live with a disease, a kind of madness that prevents you from hiding your head and giving up, the kind of madness wherein anything is possible. Sure the doctor is the expert, but as I have previously noted, at the end of the day the doctor can go home. For the afflicted the disease itself is home. Mornings, I do not live with the pain, I live in the pain. If I am going to screw my courage to the sticking place and accept that surgery might be necessary, it is no great leap for me to consider infecting myself with parasites a possibility as well.
These doctors, (and here I do not intend to include Dr. M.P.) look at me with the same horror when I say Necator Americanus, that I look at them with, when they say “Permanent Colostomy.” I was at my general practitioner’s office last week and when I revealed the spot on my arm where the worms entered. He did not come in for a closer inspection, but backed up across the room. It was funny, actually, I felt for a moment like Typhoid Mary. So what is one to do? Today we shall find out, when I gently attempt to show the best Infectious Diseases specialist in the city that what I have done is not madness, but a rational response to an irrational situation, and that not only am I qualified to make that decision, I am the sole acknowledged expert in my disease. Not hypothetical Crohn’s disease, but the disease I wrestle with every morning of my life.
I will know the outcome at 2:30, you shall know somewhat thereafter.
