Two Plus Two Equals Seven, Doesn't It?
By Ed Perlmutter
October 26, 2010
Dr. N was running wicked late that afternoon, almost 90 minutes, and by the time he popped into the exam room I was 37 notches beyond fit to be tied and Dr. N was none too pleased himself.
As head of internal medicine at the flagship center of the mega-large group health practice where I had been a patient since moving to Boston 23 years before, Dr. N happened to be filling in for Dr. S that day. Dr. N was extraordinarily apologetic for his tardiness, and promised to get to the bottom of how his schedule had fallen so very far behind, and it was only 1 o'clock in the afternoon. Ouch. I got the impression that he would be assembling a tribunal of organizational wonks to determine the cause of a wait time that we both considered to be quite unacceptable.
But that was the least of my problems. I'd scheduled the appointment to try to get some relief for two things: the eczema-like eruptions that were popping up every which way on my body -- calves, wrists, hands, forearms, face, you name it -- and for the extreme fatigue that had settled in my bones and was becoming absolutely unbearable.
And while I'd bet one hundred bucks double down that I presented myself with a full-blown case of AIDS that June afternoon in 2006, the mention or speculation of HIV or AIDS never arose, nor did the possibility of me taking an HIV test. Come now, let's be real. Dr. N was running way late and the psycho-babble and time commitment involved in offering and executing a Written Informed Consent HIV test was clearly not going to help in his game of Examination Ketchup. And while my 23-year medical record was printed out -- more than an inch thick -- and right there in front of him, complete with previous HIV test years, Dr. N gave my record the most cursory of glances.
I suppose if I had not cheated in Miss Rochow's 11th grade trigonometry class, I would have put two and two together by then and have come up with the possibility I had HIV/AIDS, but that diagnosis remained 30 days away and would not ultimately be determined by me. "Eddie Perlmutter, what are you looking at on your wrists?" bellowed Miss Rochow in front of the entire class during a particularly trying trig exam. Figuring the truth might set me free and knowing full well that I was fucked regardless, I answered without missing a beat, "That would be all of the scribbled formulas for this test, Miss Rochow." My classmates howled in fits of laughter, I failed, and that was the last math class I ever took.
Two plus two equals seven, doesn't it?
Dr. N sent me home with a prescription for a topical steroidal cream (two refills) and his best wishes for some deep and rejuvenating rest.
I decided to give him a call on New Years Eve 2006, almost six months after my HIV diagnosis. I wanted to tell Dr. N what I'd been up to since meeting him, how ill I had become before starting my medication regime. I wanted to ask him if the possibility of HIV and/or AIDS had ever crossed his mind, and why he did not offer HIV tests as a standard operating procedure, in the most routine of manners.
I clearly had his attention, but there was silence on the other end of the line -- dead silence. Had the connection been lost? A bad cell? Dr. N was speechless and remained so because he had no logical answers for me, and it became painfully clear that, like me, HIV was neither on his radar nor that of the large group of internal medicine docs under his supervision.
As I left Dr. N my phone number, I invited him to lunch sometime soon at the Boston Living Center (New England's largest community resource center for people living with HIV/AIDS) so he could have a nutritious hot meal with me and experience firsthand the changing face of the virus and how those with HIV cannot and should not be pigeonholed into preconceived high risk groups. I never heard back from him.
* * * * *
YOU BIG DUMMY, some of you may be thinking right about now: "Why in tarnation did you not ask for an HIV test?" Sure, I had them before, best guess would be eight times over the prior 20-plus years at different health centers under the same HMO-style umbrella, but I was tested when and only when a test was offered. The results: each time negative. The span in time between tests seemed to increase, and then after many years my primary care doc moved to New York, and I sort of became a big bouncing ball in the (health care) beach of life, and no physician or nurse practitioner ever asked again if I wanted to be tested. So you may still be scratching your head, wondering why didn't I ask to be tested in Dr. N's office that afternoon after my 18-month health odyssey, the one that left so many professionals stumped and provided me no definitive medical diagnosis?
I did not ask for an HIV test because I had never asked for an HIV test (I had always been passive in that regard, and waited to be offered a test). And somewhere between here and there (1999? 2002? 2004? who knows the year, really?), HIV lost much of its high-profile status both in my consciousness and in the media. Honest, I never gave HIV much of a thought in those years. And Dr. N. probably didn't spend too much time thinking about the virus either. And I'd dodged the HIV bullet for so long that at least in my wickedly warped mind I had become invincible.
Nothing could be further from the truth.
An Accidental Activist
Ed Perlmutter was diagnosed with HIV in July 2006, and has been receiving HIV therapy through a National Institutes of Health (NIH) study since September 2006. He lives with his partner in an old farmhouse on the city limits of Boston, in the woods, amongst critters and varmints and dozens of varieties of dahlias. When he is not raising awareness as an accidental activist, he is a graduate student in health communication at Emerson College and works as a textbook publishing consultant.
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December 2, 2011 - Massachusetts HIV Testing Policy in 2012: Six Degrees of C. Everett Koop -- A Blog Entry by Ed Perlmutter
September 8, 2011 - I'll Take the Paradigm Shift. Can You Super Size It Please? A Blog Entry by Ed Perlmutter
Ed's Posts on TheBody.com's Positive Policy Blog:
August 18, 2010 - Massachusetts "Opt-Out" HIV Testing Bill: Update
July 29, 2010 - Massachusetts HIV Bill Must Pass by July 31
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