Procedural Depersonalization of A Lab Rat

cropped-pen-and-heart.jpgI love anticipating but don’t like waiting. That’s why as a kid I ate around the edges of a Nutter Butter. I’d slowly nibble away the cookie until all that remained was the peanut butter cream, which I then just as slowly licked off the tiny island of cookie left underneath. The cookie was okay but the cream filling was the real treasure, the payoff worth delaying and then savoring.

When it comes to travel and medical procedures, that’s not the way the cookie crumbles. Anticipation evaporates and anxiety solidifies in its place. That’s where I am now: getting solid with anxiety.

This Thursday I go in for the upper endoscopy as the final pre-test phase in the clinical research trial of a pharmaceutical treatment for celiac disease. The doctor’s office called last week to confirm the date and time of the procedure. The scheduler who called said, “You’re a research subject not a patient so a lot of what we would tell you before the procedure doesn’t apply.”

Ouch. She might as well have said, “You’re a lab rat, not a real person, so don’t worry about the risks or the dangers or follow up care. Just show up and leave the rest to us.”

As I’ve frequently mentioned, this will be my fifth endoscopy. I know the drill, know the routine. I know from experience that it’s not really painful: the greatest discomfort post-procedure is a sore throat from having a flexible tube jammed down the esophagus, through the stomach and into the upper part of the small intestine. Piece of plastic cake. I won’t feel them tear out tiny pieces of the intestinal lining so they can measure the damage to the villi.

If they put the IV needle in correctly, that won’t hurt much, either, although I’ve had an IV insert go wrong during surgery. When I had surgery to treat endometriosis way back in ’91, they didn’t properly tape the IV needle in the vein in the crook of my elbow. I remember thinking it hurt and I should say something about it just as the nurse told me to count backward from one hundred. I don’t even think I said “Ninety-nine.” When I regained consciousness post-surgery, my arm hurt fiercely. I looked down to see it was badly bruised and swollen. Sometime during the procedure, the needle came out of the vein and filled my arm with blood, saline and anesthesia. Oops. I guess they noticed and fixed it during surgery because I thankfully never woke up in the OR.

I don’t anticipate that happening, nor do I imagine anything else going awry, but I’m still anxious. Why? I’ve never met the doctor performing the procedure. I’ve never been to his office, never met his nurse or anyone else on his team. In three days I’ll report to a perfect stranger, replace my clothes with a swath of one-size-does-not-fit-all hospital gown with the circus tent ties in the back, and then let myself be put to sleep so said stranger can stick a tube down my throat and perform whatever he needs to perform to document damage from disease, all in the name of science.

It’s a bit daunting. I don’t much like strangers bumping into me in the mall. I really don’t like casual acquaintances hugging me or otherwise invading what my niece calls my “bubble” (personal space). And yet here I am voluntarily surrendering my consciousness and my body so science can advance its knowledge, understanding, and treatment of an incurable chronic disease.

It’s made me a little squirrelly. I don’t want to leave my house today. I want to stay here with my furry office assistants and take care of my work without having to negotiate traffic and people. I actually canceled a lunch meeting scheduled for today because I felt the strong need to be in control of at least something before I turn over my physical being (and my consciousness for at least fifteen minutes) to complete strangers who will take a lot of information from me but only share a small portion of it with me. Most of the information will be for their benefit–and the benefit of the growing celiac population at large–not for mine.

Don’t worry. I’m still committed to doing my part to help improve the quality of life and health of people like me with celiac disease. I’m just realizing that there are hidden costs.

I hadn’t thought until now how different this would be from having a procedure to inform or advance my own medical care. I hadn’t thought how depersonalizing this would be or how much that would bother me. It hits me harder, I think, because of the time of the year: this month is the anniversary of a terrible crime twenty-one years ago which stole my identity, my body, my sense of safety and security, and nearly my life.That, I think, makes the required surrender for this procedure just a bit more emotional.

It suddenly bothers me that no one wants to know my insurance information. It feels wrong that the doctor won’t come in to reassure me before or after the procedure. I won’t get a nice letter or a follow up visit explaining the results and what I should do next to improve my health.

What I will get is a gift card to compensate me for my time and my intestinal tissue. You’d think that would be like yummy peanut butter cream after two sides of a sandwich cookie, but in all surprising honesty, the gift card seems like one of those flat, wrapped Biscoff cookies they serve on planes. Impersonal. Bland. And not at all satisfying.

What I have to remember is that I am helping thousands of people, not myself. Potentially improving their health is the peanut butter cream and that’s worth all the bland cookies, i.e., impersonal medical procedures, I need to chew my way through.

This definitely calls for a mango sorbet splurge.  And if you have any other suggestions, let me know!