Jason Ohler | real Being
First, please indulge me by watching the 37-second video. I recommend you turn up your sound and go full screen.
PEE-ills. That’s what I call them. It gives them more personality. It keeps me from hating all 322 of them that I have to take every week, though I will always gratefully resent their life-saving intrusion into my life. But pardon my fast-forwarding to personification, which is actually step four in the narrative arc of coming to grips with my new life.
Step one is denial. Which begins with a deep disbelief about Darwin choosing me, of all people, to draw the short straw. Not so much a woe is me, but a why is me. Not whining, just curious. I’m too old to sire offspring, so what’s gained by eliminating me from the gene pool? But Darwin didn’t foresee the many forces that would emerge to counteract nature: the kindness of strangers, an endless stream of miraculous technologies and the many magical feats of the medical menagerie. Now I consume a disproportionate share of health care resources. Getting rid of me would conserve a lot of pills. But Darwin will have to wait.
There are no answers about what caused me to develop the idiopathic pulmonary fibrosis (IPF) that ravaged my lungs. IPF is a total mystery, eluding the best and brightest of the medical research establishment. But I do find it interesting that in a philosophical moment, just prior to my diagnosis, I had remarked to my wife that I had never experienced real pain in my life. I felt guilty about it. And deprived. It had kept me from ever playing a believable blues riff. In the next sentence I told her that my only fear about living an incomplete life was that I would die without ever having ever done anything beautiful. Shortly thereafter I found myself gasping for air and facing extinction, which generated writing and conversation that even I found exquisite. Be careful what you abstract, it may materialize. Intention is all.
Denial spilled over into my post double lung transplant life when I was told I would have to take heavy meds for the rest of my life. If I wanted to live.
Enter PEE-ills. Cooked up by scientists to extend the limitations of our natural biology, they fix so many of the things that ail us, make us uncomfortable, trouble our minds, and alienate us from our own bodies, as well as the outer world within which we move. But I despise pills and I didn’t want to believe I needed them. It’s a control issue. They are so small yet they wield so much power. They seem to whisper, “I dare you not to take me. Don’t forget- I don’t need you, but you need me.” I hate it when pills are right.
My pills fall into two basic categories. The first consists of the anti-rejection drugs that suppress my immune system to prevent it from seeing my new lungs as huge splinters that need to be attacked. This says “Come on down!” to the gazillions of germs that swirl around each of us like invisible flies. The other category consists of medication that manages the side effects of the anti-rejection regimen, to keep me from losing bone mass, or developing throat thrush, or spiking my cholesterol. Then I suppose there’s a third, minor category- vitamins, fish oil and other supplements that are actually good for the body.
But the heart and soul of my therapy are pills whose purpose is to undo the pinnacle of the human body’s evolution- our immune system. There’s no question that deliberately suppressing something so precious is a crazy thing to do. But like dying, paying taxes and engaging in relationships, doing so is a necessary insanity that makes life possible. To give my immunosuppressed self a fighting chance, I will have to spend the rest of my life avoiding germs, which has about as much practicality as avoiding air. In reality, this means traveling with a mask which I rarely use, unless I’m in a plane, elevator or hear someone coughing.
Step two, as I traverse the arc, is passive aggressive acceptance. Anger at my situation made no sense, but neither did accepting my disease and the medication therapy that followed without some sense of indignation. PEE-ills. They are both hero and anti-hero. If nothing else, acceptance consumes less energy than denial.
Step three is ritual. We cling to it as a way to organize our psyches. I have a weekly date with my pill sorter. I pull up my med schedule, line up the bottles, and march through the week’s fill order, ceremoniously dropping pills into their proper places with audible plunks: one of these, two of these, one in the morning and at night, this one every other day, this one once a week, until the 300+ pills I take every week have found their homes. Ritual has a calming effect. A belonging to something beyond me, whether I want to belong or not.
Step four is personification. My pills live in hazy orange-bodied, white-capped bottles with labels written in English, Latin and marketingeze. They live in their own wicker tray, and snuggle against each other like cozy bedtime friends.
I keep them in their own bureau drawer, where I know they will be safe. They have names like Tacrolimus and Prednisone, which have no real meaning, other than to sound official yet approachable. They are so named in order to roll off our tongues and down our throats easily, naturally.
But drug names are cloaks, carefully constructed to hide their contents. No one wants to take C44H69NO12, or something that “…inhibits T-lymphocyte activation… binds to an intracellular protein, FKBP-12 (forming)… A complex of tacrolimus-FKBP-12, calcium, calmodulin, and calcineurin (inhibiting) the phosphatase activity of calcineurin.” Huh? Ahh, but Tacrolimus. Sure, I’ll take that. Sounds like an after dinner mint.
Finally, the arc closes through artification- turning experience into self-expression. In this case it requires resolving the story. Heroes are transformed by overcoming conflict, which transforms them in the process. They emerge challenged, triumphant and reborn. But in my case, I can never fully win. I am more like Sisyphus, rolling pills up a hill all day, only to start all over again the next morning. I can only triumph by refusing to stop. And by making art, however meager. Thus the video. My pills become a city scape, a Metropillus. And, as I hope the video demonstrates, when they are viewed en masse from a slightly altered, poetic perspective, they form a kind of a majestic fortress. Metaphors- where would we be without them? They help us romance the unavoidable, making the future manageable.
One day, we may print new body parts using our own stem cells, mitigating issues of rejection. In much the same way that we don’t bother to understand why a computer malfunctions – instead, we just swap out a component to make the machine whole again – we won’t even bother to understand what causes a disease. We will just print a replacement part.
In the meantime, those of us who survived the mysterious, life strangling grip of IPF – thanks to the pure generosity of strangers whom we will never meet – are consigned to a life of body bashing pills. As well as, so advise our doctors, not playing in the dirt (because of the spores that are released in the process, that can overtake our lungs), and not eating rare steak or sushi (because uncooked meat and sea food provide homes for germs), and not hugging our grandkids too much – ouch! (because children are petri dishes). Small prices to pay to be able to breathe. To walk the dog in the early morning as the sun rises behind the clouds. To hold those close who have loved us so deeply and stood by us during our darkest, most helpless times.
But those immune-destroying PEE-ills. Surely we can pay nature more respect than to destroy one of her greatest achievements. Version 2.0 of dealing with IPF awaits us.
Video components. Images are original. Music: Sprach Zarathustra, by Richard Strauss, from the album Movie Classics: Musik Aus Berühmten Filmen. This excerpt is used for satirical and social commentary purposes and is limited to approximately 30 seconds.
Pill sorter photo. By tr0tt3r, retrieved from https://www.flickr.com/photos/7780925@N04/7687284822, on July 17, 2015. Attribution-ShareAlike 2.0 Generic (CC BY-SA 2.0).
Pills in bowl. By Carsten Schertzer. Retrieved from https://www.flickr.com/photos/jonathanschertzer/6922458949/in/photolist-bxHpSv-qVt7gW-9uP8Hj-9vFzch-5WHHQw-vVyaqm-8PswbH-vMZt98-2oZBu-dP6pzb-dntgBB-t6rAvc-qQ6Yy1-58MNRk-r91mFt-dNZzFp-oTkkT7-9i8QgA-dcTGtJ-pbmFvk-8TrNgf-pf3F2-6NFB1x-4DnK2G-aj4s6D-4e5gDL-dnd4f9-eNAwVT-3bguzZ-8mhovR-eYgTJu-cUNy55-eKGho8-6NFKyZ-ei6szp-egeikK-hSELMz-9KFmbn-keAFt-eahgo1-52g59q-wBrQW-orbXo-4u7WvY-riiY3N-7aEMW6-e1i4Vp-7uWDjf-rqQ2j6-9mUE5s, on July 15, 2015. Attribution 2.0 Generic (CC BY 2.0)
Nature Magazine screenshot, v 50, 7547. I read the guidelines that Nature provides at https://s100.copyright.com/AppDispatchServlet#formTop. I think I followed them, but to be honest, they were vague and I couldn’t tell. Clicking on the picture takes you to the issue of the magazine I reference, where all credits for the article and images appear. The material is used for non-profit purposes as part of a social commentary article. Retrieved from http://www.nature.com/news/the-printed-organs-coming-to-a-body-near-you-1.17320, on July 17, 2015. Tacrolimus quote: http://www.google.com/patents/US8486993. Retrieved July 13, 2015.