The Johnston Letter, Volume 5, Number 2
Contra Mundum Medicum
By Jill Johnston
Copyright 2009 Jill Johnston
Harold my second cousin once removed called me from Long Island and welcomed me to the 80s club. I'm honored to be sure. I had spent a week trying to write a letter to my long dead father and each version got more and more serious. Ingrid says I should write some funny stories about ageing. I can think of funnier things. But I've been ageing like everyone else for a long time, since birth obviously, and have found time for a little fun. One day here in Pluto which is beautiful but has no people, a couple of women came from afar for lunch. I knew one of them during the early 1970s, a time of great opprobrium to our present incomprehensible world. And she said, So Jill, why did you hurl those chairs? That's all she needed to say to identify an infamous incident. She must have been nursing her question throughout the long exile of our rank and file. I remember a school auditorium, a stage, a feminist panel I was on, and chairs in the wings -- objects of my gleeful exercise that day. I answered with alacrity: Well Barbara, I must have been drunk! I remember nothing else that was said at the lunch, and we didn't hear from them afterwards. The women (at large) never understood me. I rarely understood them -- a condition that gave rise to much self-inflicted hilarity. Meantime I have a very serious foot condition, making it impossible to go places and hurl chairs or be misunderstood in less manifest ways. The medical profession takes up all this space. Doctors don't want you to know what's really wrong with you. They don't want you to know that they don't even know what's wrong with you. And if they do, they may help you but they don't care about you. If they did, they would be called healers. Still, I'm not being altogether fair. I've had plenty of conventional help from them. My reference point right now is narrow. The foot is not a popular specialty in medicine. Over 14 years, I've seen an impressive array of orthopedists, foot or vascular surgeons, rheumatoid arthritis guys, neurologists, podiatrists, shrinks, physical therapists, acupuncturists and pain management specialists, the latter now empowered as anesthesiologists and surgeons. A physical therapist here in Pluto did put the right name on what's wrong with me a year and a half ago -- RSD he called it, an acronym now morphed to CRPS, standing for Complex Regional Pain Syndrome -- then gave me a cure that set me back primordially. He said just throw away your crutches and walk. After promptly obeying his instructions, by nighttime I felt like a torture victim, held in extraordinary rendition. And just as promptly reverted to my inactivity, years of which had resulted in my condition. If you think the condition is made up, as in hypochondriacal, you may be right, but the pain is real. My medieval religious take on it is that I did something very wrong in my past, like being born, and this is my payback. My father's first act involving my existence was in fact to try to kill me. His effort to have my mother abort had never quite presented itself to me like that. But as an avid student of the Heroes,* I should have been able to make that link. The father of every classical hero wanted him to be killed in uterus, or infancy, and failing both, exposed to the elements. The heroes of course are all boys, and while I am one of them, I am at the same time a girl, an outsider to the tradition, and as such someone who might try to fool herself into thinking her father would have been delighted to know that she survived and even did her best to exalt him. My mother, by refusing to abort, turned us into a version of the hero Perseus and his mother Danae, cast out to sea and carried by treacherous waters to a far country, in our case the United States, where we could safely disappear into the care of my mother's lowly or undistinguished maternal family. My second cousin Harold, a lovely man, now 86 and housebound except for visits to doctors, was one of them. His grandmother my Great Aunt Mary was the sister to my own maternal grandmother, with whom I lived comfortably for six years before expulsion to an upscale boarding school orphanage. My CRPS pain may have started then (an unidentified injury is a speculative cause of CRPS), running around everywhere as I was, from soccer field to softball diamond to basketball gym to ice-skating pond to schoolrooms, chapel and refectory and study hall and so on. I never stopped running. Like the English boy in "Empire in the Sun," always on the go in his Japanese internment camp. I like the way his ordeal ends, with his parents finding him in a crowd of children gathered after war's armistice at a Japanese check point. I have a special stake in how movies end -- doesn't everyone? Recently I took issue with the beginnings of one. In "I've Loved you so Long," a trumped up euthanasia story is turned into a beautiful performance by Kristin Scott Thomas, as she endures many post-imprisonment challenges. So what's my idea for a different beginning? I don't have one. For endings, I've tried hard to think of how to deliver Thomas in "The English Patient" from her lingering death in the dark in a desert cave. Sure, she's wounded from the plane crash, and Fiennes leaves her there with water, food, a book, a pen and a flashlight and a promise to return to get her. But I think he should have simply carried her on his mad three-day trek through the desert to allied headquarters, where he becomes waylaid long enough for his beloved to die in the cave. At last Ingrid came up with a really practical idea. From the wreckage of the crashed plane, Fiennes could have created a kind of sled and "pulled" her across the desert. But then, that would change everything; the movie wouldn't even exist, and what would I have to cry about? Crying over film endings is a critical diversion. Other diversions are of course considered healthier. One friend always says, "Breathe and think positive." Yeah yeah -- I thank her once again, and put on "Glory" for another reliable emotional expiation. It's 1863 or so, and Colonel Shaw, Matthew Broderick, is leading his black regiment, the 54th, in proud columns toward the starting point for their collective death -- an assault on the heavily armed Confederate Fort Sumter situated high above stretches of sand and beach. The 54th marches on the sand between two white Union regiments, witnesses to their upcoming heroism and sacrifice. My denouement begins the moment I hear one of the white soldiers yell out, "Give 'em hell, 54th," which sets up a heartening cheer, a most significant recognition from formerly hateful racist soldiers who alone had been privileged to fight. In fact, you can pick out the one who hurrahs as a particularly nasty bigot from a previous scene. It's all so too much. I lead such a boring life in bed, see-sawing my blood supply. I was coming to this. In order to survive CRPS, I have to seesaw my body to help the blood circulate artificially. My once perfectly healthy foot was strong enough in all its intricate parts to send its allotment of blood back up into the body. Now weakened from disuse, the foot exists more or less outside my circulatory system, which I have to create myself, i.e. extra-autonomically. That therapist was right about how to cure myself. Start using the foot again, go in reverse, and fly away into extraordinary rendition! But please, trés lentement. I never saw this therapeutic sadist again. We live in an insanely violent society. I signed up with one Dr. K., a pain management anesthesiologist/surgeon, for the procedure known as SCS or Spinal Cord Stimulation, then made the mistake of trying to find out more about it. My opening hour-long visit with her had left me puzzled. First she looked at my foot and pronounced it "third stage." Oh my god, what is that?? I didn't dare ask. It sounded terminal. Indeed, the words "black stump" followed soon after. And in her waiting room I had seen a girl whose right foot had been amputated. Next, Dr. K. became familiar and empathetic, sitting very close, whispering such things as, "You must wake up depressed every morning." Then she became doctoral, sitting by a spinal skeleton with strings representing nerves hanging out of it, trying to explain SCS in a nutshell. Still rocking over the words "third stage" and "black stump," I didn't hear her explanation. She must have her routine down pat: Scare people silly, sympathize to death with them, sound very knowledgeable, then sign them up and perhaps collect a kick-back from the company that created her SCS program. On my second visit to Dr. K., seeking more information, she burst into a tremulous rage over my very impertinence in wanting to question her. She leaned way forward, thrust her arm toward a window, pointing outside with a Grendelish finger, and yelled (she really yelled), "If I told you to walk to the library two blocks away, you'd be SCREAMING with pain." Being in a strange town, I asked coolly, where is the library exactly? I'm unusually cool in a crisis. SCS must still be in the guinea pig stage, and I don't want to be an experimentee. I got out of there alive. I would never write to my dead father about all this. With devastatingly arthritic knees, his best idea was to travel to spas in Switzerland for leech treatments! Nor would he be pleased to know I knew this or anything else very personal concerning his life. As a result of writing these drafts of letters, I salvaged a new outlook on him. Very belatedly, I got mad at him. And my mother too, for good measure. My daughter is in disbelief. How could I become so ancient as to be admitted to the 80s club before seeing what they did to me? Well I'm a writer, a supposedly dispassionate breed. And I've had a lot of fun, hurling chairs and all. I'm alive. I love movies, and springtime when it's brand new and the green is all soft and yellowy. And I have two successful children, whose own parental anger doesn't necessarily deter friendship. Ingrid herself has never understood my purely analytical approach to my story. I suppose I don't comprehend it either. I've assumed an underlying rage, but if you don't experience it, it doesn't exist exactly. And now that I have, I don't see myself any the wiser or relieved or emotionally superior. Nor can I count on the dead to know how I feel. And I can't see how my feelings make the story any clearer. I haven't been writing film scripts with exorcistic endings. My story is old mythology. It involves heroes, the first bastards, though not known as such, even now. As a girl, like any of these boys, I had the task of finding the father and killing him, but in so doing could never attain his position or rank. I could only expose him, and accept the consequences of coming up short. A clue to a better solution probably lies in Harold, the last living representative whom I know of, besides myself, of the German and Swedish immigrant family my mother was trying to escape when she bumped into an Englishman who couldn't marry her. The parents of Harold's grandmother and mine arrived in the U.S. in 1850, lived on Broome Street in New York, established a bakery and had seven children. With many grandchildren to come, they were a very jolly hard-working clan. It's a proud matriarchal heritage I imitated my mother in trying to escape. CRPS in the meantime has slowed me way down. Late-breaking news is that Eric Andersen, a Danish Flux artist and friend, located at Aalborg Hospital in Jutland a comprehensive clinical guide for treating CRPS. He sent a pdf file of 51 pages emblazoned with a CRPS headline.
With thanks to my physical therapist at Nordicare, Bente, a Danish emigrant, and to Ingrid (also a Danish emigrant), who never gives up.
*Please see "The Heroes Reconsidered" in Archived Columns.
©Jill Johnston. Previously published on www.jilljohnston.com. To read more about Jill Johnston, please click here. To read more of Jill Johnston on the Dance Insider, click here.