Late-round Draft

21 March 2014

I’ve been coming to Boston’s Joslin Diabetes Center for fifty-seven years. My usual haunt is the Clinic, but today I’m one floor above, in the Clinical Research Center. I smile at a moment of not-in-Kansas-any-more delight when I sign in at the front desk: please, just your initials. I have acquired my first-ever secret identity. I’m about to undergo an initial screening to see if I can participate in a three-year study evaluating whether an established drug, in an off-label use, can ameliorate diabetic kidney disease. Its official name is “PERL: a multicenter clinical trial of allopurinol to prevent renal function (GFR) loss in type 1 diabetes.”

Kidney disease is one of my worst fears, just behind spiders and just ahead of stroke. Other diabetes complications, like retinopathy and heart disease, held no comparable terror, perhaps because at their onset I still clung to some shreds of youth’s delusion of invulnerability. Even after laser treatment and a triple bypass, fear of kidney disease trumps all. Maybe it’s true that anticipation is worse than actuality. Thirty years ago, a colleague who’d worked in a dialysis unit cautioned me how bleak that business was, though I’m sure the technology has improved, as it has in ophthalmology and cardiology. Still, “preventing renal function loss” is a concept I can embrace.

Study coordinator Taneisha had mailed me confirmation of today’s appointment, directions, study details, and a copy of the informed consent papers. So far, so good. I appreciate being prepared beforehand; I’m not fond of surprises. The paperwork is daunting—consent form, medical history, various questionnaires—almost as much documentation as a mortgage closing. There are a lot of finicky rules when you’re experimenting on humans. Since I have in fact read the form, we now decide that she’ll summarize each of its 23 pages and deal with any questions I might bring up. The form is redundant and explicit, but this feels to me more like careful instruction than ass-covering. The risks, exhaustively and painstakingly spelled out, do not seem to me any more dire than driving in Massachusetts. It intrigues me to see enumerated the risk of finding out bad medical news about oneself, the fear of which in real life keeps lots of people away from the doctor’s office. And then there are the gotchas, the unknown risks. I do not try to imagine them, but I have been warned. I initial each page, check off optional permissions, and sign and date the final page.

Paperwork dispensed with, Taneisha shepherds me through the rest of the screening. I’ve already cleared a low hurdle—I’m still alive and not too old. I am measured and weighed, have an EKG and my blood pressure taken, and donate urine and blood samples. I observe with satisfaction from the labels on the blood vials that I now have a second secret identity, ROLB1321, which I have changed here to protect the anonymity of the data.

Taneisha knows her stuff, having been in on the ground floor—the PERL pilot study. She’s low-key and her competence is paired with openness. I find her easy to talk with; there’s a current of mirth rippling at no great depth below her professional surface. When I tell her I have a reputation for underreporting she seizes her pen and jots a note as an “Ahhh!” escapes her lips. Using my real name, not one of my secret identities, Taneisha introduces me to one of the investigators. In Dr. Goldfine I get a glimpse of Bette Midler, but it’s possible this ordeal of documentation and phlebotomy has compromised my faculties. Diminutive, with dark ringlets, her face informed by intelligence and good humor, she’s a lab-coated cherub with an impressive stethoscope. I like her.

Classic straightforward science, this study has so much going for it. I list the pluses: I believe the cause is good. As a programmer, I appreciate the irony that Perl is the name of a programming language disparaged for its ugliness and lack of elegance. Allopurinol gets a good grade from my friend the pharmacy professor, and he marks hard. It’s a new way to thumb my nose at my bodily dysfunction, a means to make my particular infirmities useful, and to know that I’m not the only one to have them. It’s let me meet new and interesting people without ever having set foot anywhere near a cocktail party. Finally, they asked me nicely to participate—with age I’ve become more philosophical about rejection, but acceptance still is better.

Strange. After only one visit I feel attached to this endeavor, invested in it, like Jake and Elwood on their quest to save the orphanage. The mission, if not divine, feels unequivocally right and worthwhile. I want it to succeed. I want in, and it takes me aback to realize how vehemently I want to belong. Finally hearing the news that I’ve passed the screening, I think, Hah! I made the team! How odd that I, a lifelong introvert who instinctively loathes teams, should hear myself calling the study a team and saying I’m on it. It has always disconcerted me to be part of a team, or anything like a team, as however small a cog. Even good teams are social constructs, and being on them comes at a cost to the introvert.

My disdain for teams started, I suspect, with innate contrariness and un-American apathy toward sports, exacerbated by staggering athletic incompetence. I was always the last chosen, starting with grade school neighborhood sports. Self-esteem brutally ridiculed, spat upon, trampled. Horribly scarred. Beyond grim. It’s part of why I can understand, even empathize with, the minority position on almost any question, why I so enjoy devil’s advocacy, and possibly why I once registered as a Republican in bluest Massachusetts.

Besides their synergy of cooperation, team cultures have common side effects: victory at the cost of human decency, thuggishness, and exclusion. The fan’s impatient lust for victory and his desolation in defeat are foreign to me; I do not say “We won!” nor do I suffer when a professional sports team loses. I thought I’d shrugged off team involvement entirely when I escaped one corner of the corporate technology world, where we were expected to achieve esprit de corps at the hands of consultants plying meretricious team-building exercises. It didn’t matter whether my colleagues would rescue me when I toppled backwards in a contrived setting; it mattered that they could write functional code that they’d let me optimize later. Even under the thumb of malevolent bean-counting buffoonish management, I never did get wholly assimilated by that particular Borg. But now I find that our pack-animal nature will not be denied indefinitely, and I admit a distinct pleasure in joining the study.

This team is different, I say, rationalizing at warp speed. I don’t feel at all part of a clique or thuggish. Being in PERL has the feel of something life-changing, like marriage or my first Macintosh. I should be skeptical, as that is the business of science. But the science at whose periphery I’m hovering is beautiful, elegant. There’s no razzle-dazzle, no burning Twitter tempest of 140-character righteous snarky outrage, just careful, consistent, plodding measurement and analysis. The adrenaline euphoria of acceptance has ebbed, and now, of necessity, I settle in for the longer game. It’s not a sprint. And as the destination is not guaranteed, the journey is all.