Dispatch from Johns Hopkins, Weinberg Building
My dog, Ginger, has been invited to play in the fenced-in yard of a neighborhood dog whenever she likes. The dad of the house saw me out there one day with the dogs and his eyes alit on the plastic ID card around my neck. “Where’s that ID from?” he asked. I ignored his question, being busy with dog antics. As I walked out with Ginger, he caught me again. “So, where’s your ID from?” “Hopkins,” I said. “Oh, so that’s where you work?” I could feel his spirits rising at the thought of a bona-fide Hopkins MD at play in his yard with his dog. Yes, we even want our dog’s friends’ parents to be statusy these days. “No,” I said, “I’m a patient; it’s nothing that exciting.” His affect, accordingly, drooped, but luckily, he had no follow-ups.
I spend so much time at the hospital I do wear an ID around my neck, which I usually hang on a hook by the door when I get home, but my dog’s going-out needs were so urgent that day that I just grabbed her leash and headed back out. The ID has a barcode that must be scanned several times hither and yon as I make my rounds. It also needs to be present when I am administered toxins/medicine (check out the disposal protocols for items relating to chemotherapy if you don’t believe me!) and the numbers and DOB read off by patent and nurse alike.
I understand all of this: it’s for safety. It’s making sure you don’t get someone else’s toxins/medicine (since everyone’s is mixed up specificially for them, depending on the morning’s bloodwork and their disease) but sometimes wearing a barcode around my neck and scanning, scanning, scanning makes me feel a little less than… human. Also, I’m participating in a clinical trial and sometimes I feel like a test subject: when phlebotomy isn’t going well (they won’t give me a port but I am a notoriously difficult draw), or peptides are being injected into my back and I’m hugging a pillow and screaming “Burn! Burn! Burn!” or I’m just cooling my heels in the chemo waiting room, which is one of God’s unlovely and unloved spots. The chairs are either worn ochre vinyl or dirty burgundy-gold-and-blue upholstered. People are wearing face masks. Sitting in wheelchairs, sporting headwraps. Everyone looks tired. Some have unnatural skin tones. I’ve seen a few green people. Lots of yellow/gray. People always say “But you look so healthy!” It’s just makeup, I’m afraid.
One day a woman came to see me in the waiting room and said they were asking patients to fill out a short survey before they saw their doctors that day. She handed me an electronic tablet. “It’s going to ask you to scan at the end,” she said. “Just ignore it.” I took the tablet. It came with a stylus and was very much like a point-of-purchase screen. Except that the questions were like “On a scale of 1 to 10 how would you rate your anxiety today?” “Have you been having trouble sleeping?” “Do you have stress related to home and work issues?” “Is your disease always on your mind?” I touched through all of these questions and then got to the point. The last “page:” Would you like to see a social worker? Would you like to see a chaplain? Interestingly, both of these questions only had a “yes” box to check. I checked neither, just next, and as predicted, there was the prompt to scan my card which I almost did, just out of habit.
I see the impulse at work: We need to monitor our patients’ stress levels and make sure they are aware of psychological/spiritual resources we offer, and we need to do it in the most efficient way possible. But I, who actually would like to see a chaplain (why not?), was so put off by the format of the questionnaire than I did not check yes. In the interest of trying to humanize the experience, I felt even more dehumanized. I don’t feel brave or like I’m “fighting” a war; I merely feel like a small organism caught up in something far, far greater than herself. Which is what all life is like, I suppose. Humanity, in many ways, is sort of beside the point these days.
Mary Valle lives in Baltimore and is the author of Cancer Doesn't Give a Shit About Your Stupid Attitude: Reflections on Cancer and Catholicism. She blogs on KtB as The Communicant. For more Mary, check out her blog or follow her on Twitter.