Monday, May 31, 2010

921. Donation update

So I think it's really going to happen. I went for the physical, a long but not unpleasant experience: about 20 more vials of blood and other bodily fluids taken, interview with a doctor, hundreds of questions answered on a dozen forms (hey, do I look like someone who might have had sex with a prostitute?! but I know they have to ask), EKG, chest x-ray, no-nonsense nurse flicking her fingers repeatedly into the crooks of my arms to assess the state of my veins. It was actually almost a fun way to spend the afternoon because I was accompanied through these various trials by two staff members from the local marrow donor program: S., a young nurse on her way to getting a degree in public health, and C. a sweet and endearingly chivalrous man in his 30s who refused to call me by my first name because "it just wouldn't be right." He also opened doors and offered to bring me food and drink every ten minutes or so. It's been a long time since I went to the doctor with anyone but myself, and so was a nice and nurturing experience. And after the nurse pronounced my veins in good shape (very important, otherwise I'd need a central line for the donation and would have to stay in the hospital overnight), they both applauded. Never before has the state of my veins elicited a standing ovation, nor will it probably do so ever again.

Then I waited a week and tried not to think about it, an impossible task. The following Tuesday I received a phone call: we're so sorry, some of your blood samples got contaminated. So I rushed back to the hospital to give more, and C. offhandedly (and politely) mentioned that a few of my results had been "flagged." But no need to worry. Of course I did, so he said a doctor would call to explain. A sleepless night followed.

The next day C. himself called to say that it was a mistake, my results were fine (and the doctor scolded him for suggesting otherwise). And, with that, I was pronounced fit to donate.

So now I wait a month and a half. It doesn't seem quite real, and I alternate between being certain I'm blowing the whole thing out of proportion (it's just a few hours out of my life, and plenty of others have done it before; I'm nothing special), and being completely overwhelmed with awe. It's not a miracle, which is even more of a miracle. This is what God does; this is how life is. We're all part of one another. I become mute and immobilized if I think about it for too long, like staring into the sun.

Last week I met with one of my amazing rabbis to see if he could help me find a voice. As I learned this spring, Heschel wrote in Man's Quest for God that silence is the highest form of prayer. So when confronted with these uncountable heaps of of gratitude and amazement, I thought at first that it would be OK to be unable to express. I waited for my silence to take me to a greater place of understanding. But it didn't. Instead I was adrift, like a cloud in a beautiful but way too big sky. This event fits in no category I've ever known. It needs a "container," offered the rabbi, and suggested specific Psalms and part of the Book of Job as texts to help illuminate the sensation of feeling both infinitesimal in a vast universe, and more joyful than there are stars. So bit by bit, a little each day, I will look for answers in those words, one set of metaphors illuminating another. And continue to pray that an unknown, unnamed woman can hold on until the second week of July.

Sunday, May 30, 2010

920. On teaching

Well ... it's been a while. Since last I wrote, an awful lot of life has happened around me; not to me, things are status quo, but this swirling activity of birth, death, grief, joy, has been exhausting. Not complaining. Better to be over one's head in the stuff of existence than bored and wearing blinders.

Yesterday was one of the amazingly joyful days. Three of my chanting students, with whom I'd been working since January (one via Skype from Brazil!), became B'not Torah at services. They are brilliant women, and so of course did perfect, beautiful jobs. (This didn't stop me from being irrationally nervous, however; I was definitely projecting my knee-jerk Torah reading butterflies on them. They, in turn, were cool as a cucumber.) I cried as I watched the woman who chanted haftarah smile as she sang "Rani v'simhi, bat-zion:" "Sing and rejoice, daughter of Zion."

I was given an aliyah, much to my surprise and reluctance, and the rabbi reflected on his earlier d'var Torah about the week's parasha, Beha'alotekha, and Robert Alter's comment about "radical spiritual egalitarianism." To the elders who gather to figure out how to contain the kvetching Israelite riffraff, God grants the gift of prophesy ("the spirit of God rested upon them"). God does not fix the problem God's self, or through an agent; the people do, themselves (with a litle help, of course). Our synagogue community follows in this tradition as well, observed the rabbi, as members extend the chain of learning directly from one to another--beginning with my teacher, who made it possible for so many people to sing these beautiful words--and now it can grow threefold, as these three women find others to teach.

As a kid, I had no clue about the value of teachers. I had some amazing ones, but never acknowledged that they did more than just a job--were anything other than the hired help. I think I felt entitled to those moments of revelation, and envisioned my teachers as mere conduits of someone else's knowledge. That teaching required mastery of the art and science of connecting to others in a unique and life-changing way never occurred to me. My mother and father were certainly grateful and admiring of my teachers, but never suggested I become one. This doesn't sound like a very Jewish parent-like directive--but parents, by nature, are not egalitarian. Teaching, they believed, would never serve my talents and and goals as an artist whose imagination was meant to lead to unknown and exciting worlds. Like my parents, a bookkeeper and grocery store produce manager, teachers provided a service. My future was as a creator, a far nobler goal.

So this discovery, over the last few years, that teaching is all about learning, changing, seeing the world through someone else's eyes and ears and adapting mine to help grow theirs, has been a bit intoxicating. It's one of the most creative things I've ever done, and I'm honored to become another link on the chain.

Sunday, May 02, 2010

919. Omer update

I haven't been very good at counting the Omer this year. One reason (not that this is an excuse) is that time is doing an usually strong job of marking itself. I haven't been inspired to help it along. The father of a friend died two weeks ago, suddenly—fifteen minutes after we spoke on the phone and his voice and spirits sounded stronger than ever—a kind, sweet man with a wonderful smile who gave myself and other friends the gift of feeling like family. The next day, one of my dearest teachers and role models gave birth to a son. Marking both kinds of passages so close to one another was a roller coaster of emotions, but also helped me see how these two people were perfect examples of that third week of Tiferet—a word that means "beauty" and describes a quality combining strength and compassion. If only I had a whole week to contemplate the fullness of those traits, as the Omer intended; one day between the coming and going of these particular souls was not enough. I'm still exhausted.

Thursday, the day I found out I might be a PBSC donor, was the 29th day of the Omer, Hesed of Hod, Lovingkindness in Humility:

... Hod or humility is modesty—it is acknowledgment (from the root of the Hebrew word 'hoda'ah'). It is saying "thank you" to G-d. It is clearly recognizing your qualities and strengths and acknowledging that they are not your own; they were given to you by G-d for a higher purpose than just satisfying your own needs. Humility is modesty; it is recognizing how small you are which allows you to realize how large you can become. And that makes humility so formidable....

... Does my humility cause me to be more loving and giving? More expansive? Or does it inhibit and constrain me?

— from

In other words (I think), if I do end up being a donor, I need to thank God for the ability to give but also remember to take credit for my own actions: joining the registry, saying yes, I'll do it. If I don't recognize myself, as well, I will be diminishing this gift.

(There are way too many lessons to learn! Sometimes it seems dangerous to even blink while in the vicinity of a holy book for fear of missing the one word that might change your life...)

Meanwhile, I'm discovering more collected wisdom from others who have donated marrow/PBSC and decided to share their experiences:

Kylie's Adventure with PBSC Donation

A Quick View of PBSC/Marrow Donation

PBSC Donation Writeup

How I Met My Match: A Donor Story

918. Perfection

We study Torah to understand Rashi, remarked the rabbi at services on Friday night, and not the other way around. We don't live in a black and white world; midrash helps us interpret daily life, and does indeed count as much as the original text. This week's parasha, Emor, for example, says that the high priest must be perfect in every way. Does this mean that those with disabilities are forever flawed, less than holy? What about the rest of us? So we can choose to interpret Emor as fundamentalists, text to be rejected wholly or observed blindly. Or we can see it as a challenge from God: look beyond the surface, discover how to connect words of Torah to the realities of here and now.

"What's the text of your life?" is an awfully heavy question, added the rabbi, and we can spend our entire lives searching for the answer. But "What's the midrash for today?"—that's a little more manageable. Think about the context and meaning of your actions, he suggested, and if they don't ring honest and true—discover a new midrash.

I sat speechless for a few seconds after he said that, as if cold water had been splashed in my face: wake up! We can try to steer and influence, but so much that happens in our lives—health, world events, love—is out of our control. And how we respond to these events is up to each one of us alone, and no one else.

On Thursday I learned that I am indeed a perfect match to be a bone marrow donor to a perfect stranger, a woman in her 50s. As proof that God really does have a sense of humor, and good timing, I got the news in a voicemail message left on my phone at the exact same instant as I was having blood drawn at my doctor's office during a routine checkup. (As the events at Sinai demonstrated, important pieces of information are most effectively delivered with special effects.) I heard the phone buzz and for a second thought—as I had every time over the past month and a half when seeing caller ID from this particular area code—is this it? "It," I already decided, was no. The odds were too high (about 1:20,000), and how chutzpadik to assume I was perfect? Besides, I didn't want to get all excited and then be disappointed.

But then I stood on a windy street corner and called back, and heard yes. I was both surprised and not; I guess a little part of me concluded all along that I'd be the one. On Friday I received a big FedEx box containing a million papers to read and sign and a DVD explaining the procedure, an oddly charming glorified filmstrip complete with earnest doctor lacking acting ability as narrator.

If all goes well and I pass the physical, I'll be donating PBSCs, peripheral blood stem cells. They carry the ability to generate new blood cells, and until recently could only be harvested from bone marrow, a surgical procedure involving pain and a hospital stay. A newer method, still experimental but now the most common way to donate, allows these cells to be extracted from circulating ("peripheral") blood. For five days the donor is injected with filgrastim, a drug to stimulate PBSC growth, and then undergoes a procedure where all the blood in one's body—at least twice over—is filtered to remove stem cells, and then returned. Out one arm and in the other.

Assuming I do pass the physical, the procedure won't take place until July or later because of a drug trial the recipient is on. In the meantime, she has to stay both sick and healthy enough to make a transplant appropriate, a scary balancing act.

So it still might not happen. What's my midrash for today, in that case? How can I understand this accident of my birth and tissue type that might allow me to save a life—or watch God dangle the possibility so closely but then take it away? What if I donate and the recipient still dies? (A little knowledge, especially gleaned from the Internet, is a dangerous thing; last night I read that transplants often fail for people with this woman's condition. But it wouldn't take place unless there was some chance of success, right?)

A friend pointed out that no matter what, whether or not the process goes any further, I've given someone hope. Maybe that's the best blood of life, and the real definition of perfection.