Standing Ajar:
Notes from a Kidney Donor
Copyright © 2008. 3,264 words.
5/26/08
I received the following email recently; one of those intended for the tradition of forwarding on to everyone you know. It said: "To get something you never had, you have to do something you never did."
Forwarding jokes, political statements, gossip, all these common manifestations of the wonderfully viral internet are never more wonderful than when people feel the instinct to spread wisdom-sayings about. And I have become a person who collects them in a little computer folder marked “quotes.”
I’m a little geeky that way.
Lately, especially, I have been fully embracing messages like the above, which I always believe are coming to me by some divine force. But after sitting with this one for awhile (I wish I knew whom to credit for it), I realized that it might've actually had a different message for me than I had originally extracted. More cautionary tale than inspiration. And the next thing you know, I was posing the question: Do we humans only tend to do things for what we can reap in return?
One might think that the most profound impact this whole kidney thing would have on me would be the act itself; easily the most altruistic gesture that I, a fairly self-serving human being, have ever made; and the way in which it would transform me as a person. The jury’s out on that one yet, since we’re still weeks away from the actual switch, and no doubt when it finally does happen it will trump everything. But for now, what has actually turned my head the most are the many and varied reactions I’ve gotten from the people in my life when I announced to them that I was offering to donate a kidney to a young man in need.
I think I thought that a sentence like that was going to be the magic pill that would cast all doubts about Angela’s character cleanly away; that would put me in a new light in the eyes of those who have had their struggles with me.
I’m a nice person. Sure, I can be aloof and shy when I first meet you, but I’m a decent human being, nonetheless, who believes in being ethical and compassionate, who has spent most of her adult life trying to self-discover and become a better version of herself by the means of yoga, meditation, Buddhist studies, the healing arts, etc. I have devoted my life to being an artist, to putting something out into the world of value and substance.
And yet I can also be moody, impatient, passive-aggressive, bullish, have even been known, on occasion, to be a bit of a depressive (although generally jolly in the company of good friends), and have sometimes been described as difficult. Members of my own family have thought of me as self-absorbed. It all came out in a fairly awesome sibling fight once; you know the kind that is a great catharsis, and everyone walks away having shaved years of crusted baggage clean away in one good yelling, crying, hugging, confessing swoop.
A somewhat new and shocking discovery that I have made is that I think I’ve been a rather dubious character in most of my loved ones’ lives. They seem to be able to love me and hate me with equal fervor. I still reel a bit at the idea.
And I wonder if this hasn’t been a significant factor behind making the decision to donate a kidney. Instant atonement for my crimes of mood-swings and self-absorption.
One friend (a doctor, no less) responded to the news with: “You don’t need to sacrifice body parts in order to contribute something to the world. That’s taking it a bit far, isn’t it?” Here is a man who must know how rare it is for a kidney patient to find a living donor. And all I could think from that reaction was that I must’ve foolishly let on that I saw this as a healing not only for this young man but for my own narcissistic self. Silly girl! I know better. As soon as I start any kind of dialogue about self-examination, and doing excavating work on myself, and trying to uncover and face my grave flaws in character, and trying to up the ante on the person that I am, most people’s instinctive reaction is: “What’s with all that garbage? There’s nothing wrong with you.” People get all tripped and tangled up when the gesture isn’t clear and singular, like just wanting to help a young man stay alive. And truly, everything should be that simple. But, alas, we are complicated creatures, full of baggage and dysfunctions and agendas and blocks and stumbles; and an apple seems never to be just an apple. It’s a slippery slope trying to dialogue in that environment with most people. So, I sadly recognized the all too familiar patois in my friend the doctor’s claim that I was involved in something rather foolish.
Another friend made this into something I was doing to him. The inference, of course, was that he was worried for my safety, which is always appreciated, if a bit hysterical; but he framed it with such a sense of personal wound that I spent the entire conversation babysitting his feelings on the subject.
Certain family members have, in all of the months of my involvement in this, barely acknowledged ITS existence in their lives (that their daughter, sister, etc. was about to go under the knife for a young man they didn’t even know). Not resistance, mind you. Not “don’t do this!” I could wrap my brain around that one; that they would understandably want what they felt was best for me. No. Just non-acknowledgment. Denial is a powerful and medicative tool.
Yet another friend (and this one has to win some sort of prize) responded to my announcement that I was about to save a young man’s life by reciting a joke from a Monty Python movie (some reference to kidneys), and then instantly segueing into the next subject…and never returning. I realize that sometimes news can be met with inappropriate behavior when that news is just too heavy to process. It’s a protective mechanism. I get that. I guess I just wasn’t prepared for the world NOT falling at my feet at this most uncharacteristically selfless pronouncement of mine.
Let me not diminish the experience with spin. Most of my loved ones have found this commitment generous and kind, have admired me for offering it, and have been incredibly supportive during this extraordinary odyssey. One friend actually wept upon the announcement. Not only did he weep, he did it in front of the woman he’d recently proposed marriage to (and me) over lunch one day, potentially risking being seen by his new fiancé as soft. He didn’t care. He embraced his sensitive soul, and me. Family offering to bring me soup when I return home from the hospital, friends including me and the young man in their prayer circles, people using words like hero, calling it a mitzvah; these have been in abundance. My best friend insists on taking a few days off of her job to care for me (we're still fighting over that one). Believe me, these outpourings have been stunning.
I simply was unprepared for such a divergence of receptions.
Between the acceptors and the resistors, I have been given a fairly awesome panoramic view of the motives, agendas, fears, and beliefs of the people in my life; gotten a sense of who they really are, by their reaction to this news. It has served as a radiant telescope on these souls in my life, and none more nakedly revealed than my own:
That I would rely so heavily on the praise of loved ones; that I would need to make a plea for my own goodness by this gesture (it apparently isn't enough that I might become a better person by actually rising to the occasion; what seems to be most pressing is approval); and that I would use a young man’s health affliction as my ticket to salvation.
That’s the one that slapped me in the head and made me see stars.
And I realized that it was the resistant reactions – the ones that jarred more than comforted, that doubted and suspected more than praised, that didn’t allow me to sit on my selflessly sacrificing throne while being plied with chicken soup – that were just what I deserved.
During the months of preparing for this major event (lots of tissue matching, and blood-drawing, and work-ups of EKG’s and CTU’s and glucose tests, and urine collections, and nephrology consults, and orders to lose some of my middle-aged weight, etc.) I'd been reading Eckhart Tolle, whose whole shtick is about liberating one’s true self from the machinations of the ego, and I felt like he was pointing his finger right at me. He’s an annoying writer to read, frankly, because there’s always the sense that he has truly stumbled upon something profound, yet achieving what he talks about is a bit like finding the Holy Grail. Nice thought, but….you know...good luck!
Still, I've been made hyper conscious of my own motives, and trying my damnedest to clean and scrub them up in time to truly be of service to a young man named Hans.
Ah, yes, Hans.
He is not a plot point. Not a tool or a prop for my journey of self-improvement. Not a trophy to wear around my neck (along with a nice belly scar to prove my altruism and noble disregard for vanity). Hans IS the reason for all of this. He is a real, live, thinking, feeling human being, whose life was suddenly threatened by renal failure at the regrettable age of seventeen. And Hans is my friend (well, Hans’ amazing parents are really my friends; until this he was just the son of friends; but we are indeed friends now).
From the moment I made this offer I believed in my gut that this was meant to be, that we'd been brought into each others' lives five years ago for this express purpose: The fact that I was an instant tissue match; that no one else was considered a good candidate; that every concern I'd had about long-term ramifications had been answered to my great satisfaction; that this was a period in my life when I had expressly asked the universe to supply me with a service to someone else, because I was tired of living only for myself; that I was determined to carry this through even though it was threatening to strain relationships (and me, the people-pleaser!), and that I wasn't the least bit frightened by the idea. It was just too easy, for this not to be what was foretold.
And while my bi-monthly schedule of giving blood for the past two years certainly counts as being of service, in my mind it still seemed a little like cheating, since I was not really sacrificing a single thing (if anything I always get a little perk for the gesture; a gift certificate to Baskin-Robbins, as the blood bank's way of saying thank you: “A pint for a pint!”). Isn't sacrifice supposed to be a part of service? Offering a kidney had a whole other depth to it; it was about true selflessness. Or so I thought.
I recently got hold of a snapshot of Hans and me. I framed it, and I look at him every day in the hope of maintaining clarity. In the hope of keeping everything pure. Because Hans deserves that in his donor.
It isn’t easy. What a temptation it is to use this gesture as a calling-card for all future opportunities. Shouldn’t Oprah know about this? Well, at least the Karmic heavens will know, she thinks to herself in a moment of greedy desperation. And in the tradition of Karma, this MUST mean that life will go my way from now on. Smoothly and with no rocks in the road, because, “Hey, I just gave a kidney away!”
This cannot be given legs. It will truly be my soul's downfall, if it is. And I will not blow this remarkable opportunity to be an angel.
One of the many tests that I was given to prepare me for this journey was a psychiatric consultation. They needed to make sure I was not crazy or suicidal, or involved in some mercenary agenda. I remember the session being sort of fun, and we laughed constantly. Lots of word-association games and basic logic tests, which apparently I passed with flying colors. The psychiatrist wrote in his report that I was operating on a Master’s Degree level, which completely flattered me since my formal education only went as far as an AA. But I remember thinking that if they had gone beyond and deeper than basic abstracts, and which-shape-goes-in-which-hole puzzles, they might’ve learned that there was more at stake here than just my wanting to help someone in need. They might’ve discovered that my own sense of identity was clinging to eventually being known as The One Who Sacrificed A Kidney. And they might’ve thought twice about my mental capacity for being a donor. Maybe. Or is it simply a given that we all operate from a place of ego, and that’s okay? That it doesn’t mean we’re not fit to be of service to others? Because, really, the bottom line is, no matter what my baggage might be, Hans gets a functioning kidney. Hans gets to extend his life another 30-40-50 years. So, who really cares about the motives of the crazy, one-kidneyed lady in her clock tower, yelling: “I just gave a kidney away!”
The answer is, I do.
I’ve hated that, in my mind, this has become about MY journey. Well, there you go, folks; the self-absorbed gal, trying to rise above self-absorption by offering this altruistic gesture, only to turn it into something quite…self-absorbed.
We’re truly artful, aren’t we, us egomaniacs?
I have to take deep breaths constantly.
Every day for eight months now, I have touched and rubbed the spot on my side where I’ve supposed the laparoscopic equipment will poke through my flesh and work its medical miracles. Every day for eight months now, I have imagined what it will feel like to be missing a kidney. I've heard about amputees who can still feel the missing limb. Would it be like that? My boyfriend, at the time this all began, once asked jokingly, “Will you walk lopsided after this?” We laughed at his silliness, but I do wonder. Every day for eight months now, I have envisioned and tried to feel what it will feel like. Tried to get a jumpstart on the palpability of it. How much it will hurt. How long it will take to heal. How I’ll regard my own diet and exercise habits and appreciate my body’s temple from now on. How I will walk in the world (I don't mean literally, but yes, sure, that too). And if the scar will be something I’ll finger obsessively for the rest of my life, in awe at this turn of fate.
I have felt for a very long time a great pull to evolve, to be a better version of myself; the one who doesn't have the lazy gene, or the selfish gene, or the fear gene, or the desperate-for-approval gene. Without those imperfections, I could conquer the world. But transformation and awakening is hard work, and, well, after all...the lazy gene. And so every day for eight months now, I think I've also bet on this to magically eradicate all need for the groundwork and ascend me directly to enlightenment.
I stare at the photograph of Hans and me. He has a great face. Sort of innocent and knowing at the same time. Bewildered with the wonders of this life AND too clever for it. He smiles. He laughs. He makes goofy jokes. He plays his guitars and his basses and he gigs around town with his garage band, in between thrice-weekly dialysis sessions and despite a catheter implanted in his neck, because he can’t just sit still while bureaucracy and the tease of medical marvels are waded through. And he’s frustrated. Frustrated at the way hospital staff has constantly talked down to him, not given him the credit for being an adult, because at the age of nineteen Hans unfortuitously straddles adulthood and childhood, and therefore no one quite knows which way to treat him.
Trying to feel all of this through Hans’ lens has been a task. But I keep trying. Is he frightened? Does the catheter in his neck make him nervous? Does he have hope for a long future? Or does he already have the teenage chip of jadedness?
We hang out together. We went to see two living jazz legends, Herbie Hancock and Wayne Shorter, at UCLA (ironically, the same grounds upon which this surgical procedure would’ve taken place, until a whole barrage of red tape and personality conflicts had us switching hospitals), and the Rolling Stones concert movie. And our connection, our bond, is being solidified.
What will happen to us when all of this is done? Will our bond continue? Grow even more? Or will we drift apart, our deed done, mine to give, his to receive? I think we will be friends forever. But I do fear a possible obsession with staring at Hans' rib cage every time I see him, and envisioning my kidney inside his body regulating his fluids and his electrolyte balance by the autonomic process of filtration, secretion and re-absorption, because, really, it’s all just too unreal! And I’m sure his parents will fear a pending sense of eternal obligation to me. And it will simply be my job to assure them every day for the rest of our lives that they owe me nothing.
How do I do that? How do I assure them that they are not in debt to me? And how do I keep visions of Oprah, and Karmic insurance, and instant enlightenment, and entitled blurtings of, “I just gave a kidney away!” from dancing in my head?
How do I keep everything pure?
And the best that I can figure is that it'll be by thanking the universe (and the doubtful ones) every day for making me self-aware enough to alert me to possible egomania. See, that’s really the perk of being self-absorbed. You also stand a shot at being self-aware. And cutting off craziness at the knees. Well, a shot’s all I can really ask for, I suppose.
There are times that feel so lonely, when I had originally fantasized visions of the crowd carrying me on their shoulders. Is it coincidence? Related? Are there some who are actually drifting away from my life because they don’t get this gesture? Or because they smell my self-aggrandizing weaknesses reeking from me?
And if either is the case, then losing those who would leave so easily and facing my own narcissistic imperfections are a small price to pay for the shot at witnessing a young man bounce back like a flower newly watered.
What a front-row seat that will be!
An Emily Dickinson quote comes to mind; one I should really get going on the internet, for other fellow geeks’ computer folders that are labeled “quotes”:
"The soul should always stand ajar, ready to welcome the ecstatic experience."
Well, universe, here I am. Standing. Welcoming. Ready.