*TMI alert. If reading about pain, blood, or defecation makes you squeamish, you may want to skip this post. You should know up front that this particular confession includes a few uncensored reflections about a time when I experienced all three of those things – simultaneously.
You sure?
OK then. Consider yourself warned. Here we go.
I confess that when my prognosis for survival was at its most precarious, fear, shame, and self-loathing sometimes prevented me from seeking out the medical care that I needed.
An open letter to one of the many physicians who helped to save my life and salvage my self-worth.
Dear Dr. Fleshner,
It has been more than 20 years since we met. You came into my life two decades ago at a very consequential moment. When my health was in decline and my spirit was faltering, you helped me to get them both back on track. I trust that this long overdue thank you note finds you happy and well.
I was in my early thirties in 1996 when I was referred to you by my primary care physician. At that time I had been living with an HIV diagnosis for almost a decade. My existence in those days was like marking time in a kind of contaminated purgatory. I was diligently monitoring my diminishing T-cells and hoping that whichever opportunistic infection it was that finally came to claim me would not be too hideous or excessively protracted.
To be fair, those were happy times too. I was blessed to be in a loving and supportive relationship with a wonderful man. We had a small apartment on the fringes of Beverly Hills where we liked to host what we called Priscilla Parties. These were boisterous gatherings of mostly sober and/or HIV-positive gay men, in drag, lip-synching to our favorite divas. Think Ru Paul’s Drag Race on the cheap (and not so pretty). Laughter helped us through the frequent rough patches during the height of the AIDS pandemic. I also had a small but veraciously devoted group of friends. We celebrated birthdays together, hung out, and kept up a weekly poker game. In addition, I was steadily employed at a company that provided me with health insurance. Yes, even in the darkest days of the plague, I was one of the lucky ones. And I knew it.
By the time I finally got up the courage to walk into your office, I was already having to wear menstrual pads in my underwear to avoid blood stains on my crisp, white Calvin Klein’s. It was the nineties after all and Marky Mark had set a very high aesthetic bar for gay men in their undergarments. And even in the face of my escalating physical challenges, I was desperately trying to keep up with the homo-Joneses. That was the decade that Marky’s black and white underwear editorial actually prompted me to pay for a provocative photo shoot of my own. Designer skivvies and all. You know, lest Calvin grew weary of Marky’s hyper masculine, crotch-grabbing bravura, and opted in his next ad campaign to go for a decidedly softer, less menacing quality. Say – I don’t know – moi, for example. If an opportunity presented itself, I thought I should be ready with some 8×10 glossies of me in my tighty whities. After all, what is it that the bible says about preparedness? “Watch therefore, for you know neither the day nor the hour.” Matthew 25:13. Wahlberg will get it. He and I may not have had much else in common at the time, but in a Venn diagram our overlapping region would have at least contained the following: male, Catholic, and exhibitionist. But I digress.
In your long career as a colon and rectal specialist, you have undoubtedly seen a countless assortment of men with their pants down. And after two long decades, I have no reason to believe that you will remember my bare backside in particular. Whether or not you recall my lithesome hindquarters, you likely have not forgotten the kumquat-sized condyloma that was blossoming on my anus. Keep in mind that those who know me well will agree that I am generally not prone to exaggeration. So believe me when I say that the jaw-dropping growth that I was cultivating on my rectum had Journal of the American Medical Association written all over it. It was a publication-worthy gnarl of wart that had to be seen to be believed.
I don’t remember you grilling me at the time about why I had waited so long to seek treatment. Thank you for that. I was frightened and deeply embarrassed. You were neither judgmental nor put off. You talked a bit about the Human Papillomavirus and suggested that my compromised immune system had likely cleared a welcoming path for the infection’s accelerated progression. You let me know in calm, matter-of-fact tones that surgery was my only option. You also explained that it would likely be an unpleasant recovery process. I left the initial consultation still feeling ashamed and dirty, but I was also slightly emboldened to know that there was something to be done. And however arduous the procedure might be, you gave me hope that recovery was possible.
Unfortunately, in the days following our initial appointment, a representative from my HMO insurance plan notified me that my preapproval for surgery claim had been denied. You were out of their network. So, on a very tight budget and without the aid of insurance, I found myself back in the feminine hygiene isle at the drug store trying to look like a sweet, confused, straight guy shopping for his girlfriend who was – let’s say – laid up at home with a case of the monthlies. As an actor, I was always a big proponent of props. So grabbing a bottle of Motrin, a People Magazine, and a pint of Ben and Jerry’s before heading up to the checkout really grounded my performance and helped me to live in the moment. It was a complicated age. Sometimes skilled and fearless acts of thespianism were all that stood between me and utter mortification.
Eventually, my insurance company supplied me with the names of three local colorectal doctors whose services they would cover. With their contact information in hand, I set about trying to find another doctor who could help me. One that my limited insurance plan would approve.
I am fairly certain that the first HMO approved MD I went to see audibly gasped and took a step back when he spread my ass cheeks and saw the angry monster that was lurking there. That is at least how I recall the spirit of his reaction. Surprise and disgust. He told me to get dressed and curtly explained that there was nothing to be done. I told him that you had suggested surgery, but he did not think that removing the growth was a feasible option. He expressed concern about the amount of scar tissue that would be generated from such a procedure, and did not feel confident that I would have a functioning path of evacuation when all was said and done. Oh, and don’t forget that copays are due at time of service.
The prognosis from HMO MD number two was even bleaker. He also said that surgery was not possible on a growth that large and with that particular placement. In addition, he warned me that continued progression of my condition could potentially develop into cancer. Considering my HIV and my compromised immune system, he believed that I was at an even higher risk for any number of complications. There was nothing he was willing to do or suggest. Oh, and I’m sorry but we do not validate for parking.
On to HMO number three. The third white-coated gentleman was a tad less dismal and dismissive. He also would not consider surgery, but he did have an alternative. He offered to apply some sort of corrosive chemical topically to see if the irksome intruder could at least be kept at bay. Over the next few months I endured a number of painful applications. Eventually, however, he informed me that no progress had been made. He concluded that continuing with the bi-weekly butt scorchings would just be an agonizing exercise in futility. At this point, he too informed me that he had nothing more to offer. Oh, and please feel free to recommend me to your friends.
Frustrated, I reached out to the staff in your office and they suggested that I try petitioning my insurance company for an out-of-network exception. They told me to write a letter to my HMO and explain to them that none of their surgical referrals were up to the task of clearcutting the cauliflower on my keister. If I could convince them that an acceptable option was not available under my plan, they might authorize treatment from a doctor that was outside of their limited network. I followed their advice and thankfully my request to see you was approved. You welcomed me back and we immediately set up a date for surgery. You told me that the condition had grown worse since you had last seen me. But you still believed that removing the condyloma was my best and only option.
Over the following couple of years, before all was said and done, I ended up having three surgeries. As you had warned, the recovery following each procedure was intensely uncomfortable. To put it mildly. I actually struggled with Vicodin withdrawal at one point. Trying to balance my need for heavy duty pain relief medications with some of the inconvenient side effects produced by opioids was challenging and often unsuccessful. For example, just so you know, the combination of constipation and sutures around your anus can turn an otherwise quick and simple trip to the bathroom into a long and excruciatingly painful excursion. Again, thank goodness for Always Plus. It took some doing, but eventually you were able to eradicate the problem in the end. Or should I say the problem in my end. I jest. I know. But like I said earlier, when life is hard, laughter helps.
Reflecting now on the pain and ugliness of that experience, I recognize an irony that was lost on me then. The horrible growth that you removed from my body was a repulsive, outward, physical representation of a psychological ill that I was trying desperately to keep hidden at the time. The debilitating shame of being gay and HIV-positive. And while you were able to remove the visible manifestation from my body, the feelings of stigmatization and self-loathing remained in my spirit. I have struggled for the greater part of my adult life to fully heal myself of that shame. I am happy to report that I have come a long way. A very long way indeed. And writing letters like this to glorious individuals like you who have helped me along the way, continues to be a powerful, soul-soothing remedy. I have also come to a peaceful resolve about the small shred of shame that I believe will likely never go away. I regard it now as a nostalgic imperfection. Helping to remind me of a time when I was seriously injured. Like a scar. And it’s always a surefire conversation starter. When someone I first meet notices the residual wound in my psyche, I am happy to take the opportunity to regale them with the tale of my long ago emotional trauma, the angels who came to my rescue, and the ongoing miracle of my recovery. Yes, I am without a doubt one of the lucky ones.
Speaking of scars. The one you left on my ass is doing just fine. And talk about a surefire conversation starter.
With gratitude forever,
Jim