by Vera Mehta, Ed. D. | March 2001
Serious illness, like great wealth, is one of those things that we know exists out there somewhere, but which has very little connection to everyday life for most of us. This is not because we are unaware of its presence. We read about AIDS destroying huge chunks of the population of Southern Africa. We read moving autobiographies by cancer survivors. We shiver as we visualize the victims of the dreaded ebola virus and silently thank our lucky stars that we are not one of them.
I grew up in a third world city where tiny malnourished four-year-olds with bloated stomachs and strange red hair, deliberately mutilated limbs and sores all over their bodies, were a familiar part of the landscape. As familiar as the vendors and hustlers jostling for space on the teeming sidewalks, and the flies buzzing over steaming piles of garbage and open sewers full of scum and cholera. But I was from a comfortably middle class family. And class in India insulates you from the maladies of the poor as securely as the walls of a fortress protect you from an invading army.
We had a family doctor that came to the house whenever any of us was taken ill. When medicines were prescribed, they were either made up in his “dispensary” by his Goan Catholic nurse (known to everyone as “D’Souza”-if she had a first name, nobody knew what it was) or the servant was dispatched by bicycle to ‘Bandra Medical Stores’ for the prescription to be filled by our local pharmacist. I have no idea what was inside any of those pills and powders in their little brown paper envelopes, but they seemed to work like magic. We were all cheerfully, almost obscenely healthy except for my uncle who, though he had perfect teeth, suffered from a “delicate” stomach. Not so my brother and I. We managed to consume vast quantities of “street food”-pani puri, bhel puri,(combinations of rice crispies, raw onions, coriander leaves, green chillies and hot chutney eaten with little soft or crisp ‘puris’), raw mangoes and guavas with hot chilly pepper sprinkled on top, sugar cane juice, seekh boti (marinated, skewered goat meat cubes grilled over charcoal) and all manner of other delicious but forbidden stuff-cooked and presented with great flair on old, dirty scraps of newspaper by the bhaiyas (food vendors)on the beaches and streets of Bombay without any apparent ill effect. We often taunted our uncle for his “sissy” habit of insisting that every raw fruit or vegetable he ate had to be washed in some antiseptic solution that looked like purple water (I later discovered it was potassium permanganate).
Whether my robust constitution was the result of good genes, a well balanced diet, educated adults who made sure I was given all the right childhood vaccinations and inoculations or some combination of all these, it ensured one thing. Like Prince Siddhartha before he became Gautama the Buddha, all through my youth I knew nothing of real sickness or death. They were what happened to other people. Elderly relatives infrequently visited and dimly viewed as they lay propped up against pillows behind yellowing mosquito nets, the sickly heroines of Italian operas like La Boheme and La Traviata (peculiarly also part of the educated Indian’s cultural repertoire) and “the poor” who were all around, yet “invisible”.
After I left India and lived successively in Trinidad, England and Nigeria for various lengths of time before settling in the United States, this obliviousness continued through changing economic circumstances, two marriages and three children with one dramatic exception: the birth of each of my children. I continued to remain careless and slothful about my own health habits but never once took my children’s wellbeing for granted. When they were infants I lived in terror of sudden “crib” death. If one of them caught a bad cold and woke up in the middle of the night coughing and making those rasping, phlegmy, struggling-for-breath sounds, I would frantically rip through the pages of my tattered Dr. Spock and look for the section that told you just what to do. When one of my sons stubbed his toe on a piece of broken glass, I was convinced he would bleed to death before I could get him to the pediatrician’s office. During a visit home to India, my daughter fell ill and was doubled over in our hotel room in Khajuraho with severe gastrointestinal pain. I prayed all night for God to “transfer” her suffering to me, as I had once read in my high school history book, the Mughal emperor Humayun had done when his son Akbar was similarly ill. (Whether it was Divine intervention aided by the Cipro tablets I had prudently brought with me through hearing Drs. Yaffe and Ruden prescribe them countless times for patients back in the U.S., or not, I will never know. But the next day she was miraculously cured and happily went off to look at temple carvings with her father while I, delirious with relief, stayed behind realizing my wish had come true-I had come down with a very mild case of the same symptoms!)
I bargain with God all the time. Make it go away and I promise to atone for some recent sin. Make it go away and I will never again fail to acknowledge Your Existence. Alas, once the immediate crisis is over, I tend to lapse back into my old heedless ways. Despite all my good intentions to, if not offer up sacrifices of slaughtered goats and chickens, at least be more Godfearing by reciting my daily prayers, I carry on as if the secular and sacred are two totally separate domains. God can be put back up on the shelf or in the attic together with the seasonal holiday decorations unless of course I suddenly happen to need Him/Her in between.
About eighteen months ago my oldest son was diagnosed with a serious health problem. After nine very frightening days when he was in the hospital, my family and I learned for the first time what it was like to live under the constant shadow of fear of the unknown. What was the long-term prognosis? Even if his symptoms could be controlled through a combination of the knowledge and skill of the very dedicated physician under whose care we had entrusted him, and the dizzying array of drugs that had rapidly become a daily part of his routine, would they be able to prevent the inevitable deterioration of two of his most vital organs? What about that elusive thing known as “quality of life”? Would he be able to savor the hard-earned fruits of success at almost reaching the end of the very prestigious academic program preparing him for his dream career as film critic and historian? Would there ever come a day when I didn’t see that exhausted look come over his face after even the mildest exertion, like going up and down subway stairs? Would he ever recover the lean and muscular physique of his high-school years when he was captain of his school track team? What was there in the cards for marriage? Children?
These and other similar questions and fears huddled together in a corner of my mind like some giant sleeping beast that you scurry around on tiptoe in the hope that if you don’t disturb it, it might never wake up.
Then, of course, came the day I had long dreaded. As was our custom about once a month, my son and I met for dinner at a favorite diner on Second Avenue. We talked animatedly about different subjects-his schoolwork, my job, family news, movies we had both seen etc. Just as we had finished the meal and ordered coffee, I gradually realized that he seemed somewhat distracted and had been twisting around uncomfortably in his seat for quite a while as I chattered on about his sister away at college in New Orleans and his cousin’s latest scheme for launching a new business. It was then that he suddenly blurted out that lab results following his last two visits to the doctor had not been so good. The doctor had told him it was time to start thinking about Dialysis or Kidney Transplant.
I felt as if a huge boulder had been aimed and struck right at the center of my stomach. A strange whirring sound rang in my ears and I can remember the rest of the conversation only in fragments. As he later walked me to my bus stop, one thought had already risen above all the others-God, please let it be me who turns out to be the Compatible Donor.
Even though I had hardly grasped the full implications of my son’s words I knew immediately and instinctively that a “new” kidney was the only option that was seriously under consideration. The doctor had mentioned my younger son (his only full sibling) and myself as his best hopes. His father, having survived two heart attacks, was out of the question: it seemed crystal clear to me that as long as I passed all the necessary medical tests for being a match, the choice had already been made. Unless I was definitively ruled out I did not want to even hear of subjecting any of my other children to what promised to be the fairly grueling ordeal ahead. Not that I am an especially brave person or relish the idea of physical pain. I do not. But even less do I want to pace outside an operation room pondering the outcome of two of my children simultaneously under anesthesia.
As for my notion of Dialysis-probably wildly inaccurate-but I have always imagined it as something that takes place in one of those medieval torture chambers with the patient strapped to a pallet hooked up to some gargantuan contraption sucking away all the blood/poison from the patient’s body after which he emerges pale and wraith-like, a victim of one of Count Dracula’s lustier drinking sprees. Even if not quite that, it has to be an almost intolerable intrusion in a young person’s life-or, for that matter in the life of a person of any age. Similarly, even though I know the majority of organs for transplant come from cadavers, I also found out that night that if an organ could be “harvested” (what an odd word) from a living donor, it was significantly preferable from the point of view of the recipient.
“Organ”, “cadaver”, “donor”, “transplant”-all these words with their slightly grisly connotations that strike up images associated with graveyards and old horror movies like Dracula,The Mummy and Frankenstein now slip off my tongue as easily as saying “Coffee with half-and-half and two sugars, and one egg and cheese on a roll” to the guy in the coffee shop where I stop each morning for breakfast. I can say “Nephrectomy” without stumbling over the separate syllables and can probably do the patter about its superiority over all other current therapies for patients with Chronic Kidney Failure as well or better than any ‘ Renal Transplant Coordinator’ in the country.
The past few weeks have gone by as if in a dream. On March 23 my son and I went for our first appointment to the Transplant Center of the hospital where the surgery will take place provided I turn out to be a suitable donor. Much of the day was spent sitting around in waiting rooms as we waited our turn to be seen by the various members of the Transplant Team. When it did get to our turn we were treated like royalty. People could not have been kinder or nicer-the Transplant Coordinator who turns out to be a kidney donor herself and who showed me her very pretty purple scar, the surgeon who will operate on my son, the social worker who explained how the astronomical financial costs would be handled, the young man who registered us for the first set of blood tests, the two women who finally did the blood drawing filling up about fifteen vials with my son’s blood and eight with mine (who knew they needed so many). I found it very interesting that each one of these people belonged to a different ethnic/sub-cultural group. The Coordinator was Italian-American, the surgeon was Orthodox Jewish, the social worker was a very merry Irishwoman, the registrar at the lab was African American, my technician was a young Hispanic woman from South America (I’m not sure which country) and my son’s was from the Philippines! Talk about a melting pot. It was somehow comforting to feel that in some obscure way all these people with such disparate backgrounds and life experiences were united in concern and good wishes for our wellbeing. Kind of like having the United Nations backing you as you braced yourself for battle with a common enemy!
The Coordinator told us that as soon as the analysis was complete and the results sent up to her she would call me at home. The protocol is that only the donor is informed of the result so that if he (in which “she” is always understood) decides he does not want to go through with it, he can still pull out gracefully at that point by announcing that there was a positive cross-match which obviates the need for further work-up. (Only if donor and recipient are blood group compatible and cross-match negative, does the evaluation proceed to the next level).
Around 4:30 in the evening, after having spent five and a half hours in the hospital, we were able to leave. My son and I parted at the subway as our trains took us home in opposite directions. Probably a good thing. Though we had laughed and joked throughout the day, we each needed to retreat into our own thoughts. There was both so much and so little to say. I promised to call as soon as I got the news. I read about the ‘Oscar’ contenders on the way home in the train and bus and wondered why I hadn’t gone to see Crouching Tiger, Hidden Dragon before this. When I got home, I went straight to bed. I did not expect to get called until the next morning.
She called back at 11:30 that night. The only thing I heard was “Congratulations, you’re compatible!” I did not call anyone until the next day. I did not dream that night.
* * * * * * * * * * *
My son and I have begun this joint, almost surreal journey almost exactly thirty years to the date that we were first tethered together at the moment of his conception. He is the patient. I now have to learn to be one. Since I work in a doctor’s office I know exactly what I must do in order to be “a model patient”. I must take responsibility.
I start the process of making appointments for all the many tests I will have to undergo. I am determined not to give anyone any trouble either by not filling out all my paperwork accurately, or not following ‘prep’ instructions for the various procedures. I have started to take vitamin and mineral supplements, a habit I scoffed at for years as nothing but another example of the “American” proneness to excess in everything. I have sworn off all the junk food that I regularly consumed with such passion only one short month ago-McDonald’s French fries, chocolate frosted Dunkin’ Donuts, frozen Jamaican patties…. ah, such a lovely list. I have become very finicky about what I eat for breakfast and lunch on workdays and spend twice as much time hunting down only “healthy” foods, which cost twice as much money. I alternate between wanting to talk obsessively and compulsively with my family and friends about what is ahead, and longing to be left alone with Martin Buber’s I and Thou, a text I have not picked up since the early 1970s when everyone of my generation was reading it along with the Tibetan Book of the Dead and The Communist Manifesto.
I know how much I want to do this. But I am almost sick with fear. Fear of the terrible pain that Pat, the Transplant Coordinator has warned me to expect after the surgery. Fear that it might be in vain. I often feel on the verge of tears. And then I see the sun streaming through the skylight on a glorious Saturday morning, making the soft, black fur of my Rottweiler Sophie’s ears gleam like watered silk; I bury my head in her impossibly fat neck and I am full of hope. It will all turn out O.K. My son is going to be fine. I am going to be fine.
I now think of God every day.