Friday, December 24, 2010

967. Update!

Yes, another post not about chanting, and with an exclamation point in the title to boot—update received from my stem cell recipient, and so far all is well! Engraftment was successful, meaning that her body didn't reject my cells and they're starting the process of creating a new immune system. She's home from the hospital, although not yet out of the woods (rejection, infection, and other nasty things could happen at a later date)—but this was the first big hurdle. I'm glad to able to say "congratulations" in my answer to her note.

I am now very proud of my stem cells, if I say so myself, and of God (and many teams of doctors) for knowing what to do with them. This is great news to have at the start of the secular year, just as donating those cells was a fitting way to begin the Jewish new year. Good timing on the part of the universe, which sometimes does get it right.

Monday, December 13, 2010

966. What is the Qur'an?

Here's an excellent video, linked from Islamicate:

"What is the the Qur'an? An Agnostic Jew Speaks. Lesley Hazelton at TEDx."



(TEDxs are "independently organized TED events.") The title says it all, and the speaker is brilliant, straightforward, and funny. And I wish she could have been at my side at a recent gathering when a member of my extended family severely tested my commitment to shalom bayit. I bit my tongue and knew I'd lost the argument before even uttering a word, because he was the kind of guy interested in no opinion but his own (wrong, scary, bigoted one). Lesley Hazelton could have made him a believer, however.

Sunday, December 12, 2010

965. Rain

Not much blogging here lately, I know. But I've been writing, mainly for the wonderful class I'm taking once again where we study a little Torah and then listen to one another's words—I am awed and inspired by both. I wish there were more hours in the day to do that, and work, and sing, and draw (an old hobby newly resurrected—or will be, once I finish clearing some space out in a corner of my bedroom). Oh, and socialize and pray and look at art and relax. I need a 48-hour day.

Meanwhile, in the middle of today's 24-hour one I led a shiva minyan. I arrived to see the rabbi deep in conversation—must be a scheduling mistake, I thought, since they certainly didn't need me if he was present. "No problem," I said to the son of the deceased. "I'm glad to stay." "The more the merrier," he answered, not ironically. A torrent of laughter came from the dining room; you could almost see the love pouring from all these good spirits. But I didn't know a soul, and suddenly felt uncomfortable. I'm not great at being a stranger in the middle of a crowd, even a really nice one. Just as I began to strategize which back wall to melt into, the wife of the deceased came over.

"You can lead now," she said with a smile. And there was the rabbi, putting on his coat and thanking me; he just came by for a visit. (Maybe he was on his way to another minyan. This winter, once again, brought a depressing increase in deaths within the community.) I was relieved to have something to do, and to do this thing in particular. (And also that the rabbi would not actually listen to me lead. Silly! They hear me sing all the time. But not in someone's living room while pretending to be in charge, even though I sort of am. It's less stressful to wear that mantle in a room full of people I don't really know.)

Today was the last day of shiva and everyone prayed wearily, too familiar with the drill. I learned that the deceased was alive and eating dinner at this time just a little more than a week ago, and then died very suddenly. The family cried and smiled and laughed, lovely, gracious people who made sure to thank crowds of friends for their support, and didn't seem numb, but I knew they were. I walked out into the rain very glad to be alive, chilly, and wet in the middle of Broadway.

Thursday, November 25, 2010

964. Grateful

(Written earlier today en route to a wonderful holiday celebration.)

"I am grateful: for the enormous hearts of friends; for all the words that seem to find my eyes at just the right times; for my niece and how she can make food out of love, and vice-versa; for the solid roof over my head; for the way rain caresses the streets of my city; for cats, in general; for the ability of strangers to suddenly find each other and become one; for the miracles of science; for the fact there there are no miracles, because life in general is just one, big, amazing invention; for the blood in my veins; for the love I’ve been given and the love I have to share."

Above, my contribution to the Shine The Divine Gratitude Quilt—see here for beautiful words about why we're lucky to be alive. My day began with a little holiday breakfast with friends, and I'm now en route to my niece's new home for a magnificent feast. (I'm not particularly grateful for two hours on the train next to a woman who is talking on her cell phone in a really loud voice--about, unsurprisingly, her recent hearing test. But this wouldn't be a Jewish blog without some kvetching, right?). Thanksgiving was never a big deal when I was a kid, and always a bit depressing. I became inured to the cycle of feeling jealous and certain the whole world had better families than mine--followed, after reaching the stage of complete misery, by shrugging it off and acknowledging that things weren't so bad, after all. When I was really little, we went to my Aunt Lil's house for turkey and decorating the Christmas tree. Aunt Lil was my mother's very Catholic best friend from a childhood as part of the only Jewish family in a tiny Queens neighborhood (eventually plowed under by the BQE). I had a very Catholic best friend back then, as well, despite living in a massively Jewish neighborhood, so assumed this interfaith experience of Thanksgiving was de rigeur.

Then my parents divorced, and Thanksgiving turned into dinner at my (related by blood) aunt and uncle's. Sometimes we went out to eat, and other years did nothing at all. I don't remember much about those occasions, aside from one really depressing time at a steakhouse chain in the mall a few months before my mother died. I'm amazed, in retrospect, that she had the energy to go anywhere at all; I wish I had understood the extent of this sacrifice at the time.

But I've come to realize that my checkered holiday experiences have left me in better shape than others I know who now find themselves without family, for whatever reason, and remain stuck at the miserable part. I feel for them—but also want to slap them like Cher in Moonstruck: "Snap out of it!" Today is one of the few Thanksgivings of my adult life that I'll spend with more than one actual family member. Many past dinners took place at restaurants with wonderful friends I'll miss very much tonight, where we ate vast amounts and felt free of traditional tsuris. We live in a family-centered culture, and even in this modern era of new and fluid definitions of the word it sometimes feels like those of us without a large assortment of relatives have second class status. I know a number of people who are ashamed to admit having nowhere to go on Thanksgiving. (I hasten to add that I know more who are role models for how to reach out with strength, humor and compassion during even the crappiest of circumstances.)

So I do my best to make Thanksgiving into an occasion to share gratitude with friends--nice if they happen to be family, but equally wonderful if not. Meanwhile, about an hour away right now from some delicious food, and the loud woman just got off--a reason to be doubly thankful.

Monday, November 15, 2010

963. Student

Back to my wonderful student. I don't have much experience around kids, let alone teaching them. Awhile back I tutored a little boy, a second grader, through a public school reading program. The few personal details I was able to extract suggested that his parents were wealthy and way too busy; they bought him a room full of books but never sat there while he opened them, so he rarely did. He and I spent our time reading together, me correcting him on words while encouraging him concentrate and get excited by the stories. And he did, eventually, because I think I was one of the few adults in his life who paid this kind of attention.

I hope he learned something during our partnership, but I know I did, or more accurately, re-learned: how to think like a child, a combination of infinite patience and thoughts moving more quickly than the speed of light. I tried to remember this when preparing for my new chanting student, who could not be more different from the little boy. She's quick and focused and fascinated by a million different things, all supported by her deeply involved parents. She studies more than I ask, and is bummed that her portion isn't longer. She's also learning faster than I can teach her, and asks questions harder than anything I could come up with. Although someone else will be helping her write her d'var Torah, we've also started to study the parasha together (Shoftim), at her request. Once again, I'm pretty sure I'm learning more than she is, which I'm beginning to think is the whole, unadvertised point of teaching.

Sunday, November 14, 2010

962. A note!

So I sat down to get this blog back on topic and write about my new student, a little girl preparing for her Bat Mitzvah next fall—the first non-adult I've taught—and how brilliant and quick she is, with a beautiful, strong voice that belies her tiny stature, and an almost scary ability to remember tunes as soon as she hears then (or maybe all kids are like this, and it's just we adults who are a little slow?)—when suddenly:

A note! From my stem-cell recipient!

Of course the news was delivered via a cell phone message from the bone marrow people on Wednesday afternoon, same day and time as always. I guess Wednesdays are when they leave momentous messages. I'm at a client's office at that time, and answer only when I see that number on Caller ID—which for awhile was happening every week. This time the phone was in my bag, and I didn't notice the message until I was halfway back home. I ducked into a doorway and listened. Call me, said the woman who'd given me all the news since day one, and I'll read it to you before I send it to you! I ran the rest of the way and called, out of breath.

I had no idea my recipient could get in touch before a year had passed. I recall references on other blogs to letters received, but the chronology was vague; I assumed they came after a year. But in fact both donor and recipient can exchange notes at any time, as long as they remain anonymous, via the agency that facilitated the transplant.

It was a beautiful letter, full of thanks. My recipient is a real person, and my stem cells are now doing their work in her body. It actually happened; I haven't been dreaming these past 6 months; I have her voice, in writing, to prove it. She has a family, people she loves and who love her, and the goal of getting well in time to take part in a life cycle event next year. She received a transplant before that didn't work. I am her second chance and, in clear, strong handwriting that I saw today when I finally held the actual note in my hands, wrote that she couldn't find enough words to express her gratitude for my gift of life.

Ecstatic, astonished, overwhelmed, I exhaled the biggest ever sigh of relief... but a small part of me wasn't surprised. For some reason I always imagined her as having grown children and a big family, as the note implied, perhaps because I didn't want to think of someone so gravely ill as being at all like me, who have neither. Or that it was too sad to envision her all alone during this struggle. I had harbored a secret wish that she was nice and friendly, afraid of the opposite: that she coped with disease by becoming bitter, shutting off, and would never want to know me.

It's still very early, less than a month after the transplant. Bracha is nowhere nearly out of the woods, and all I know about her condition is that she has enough energy to write, which seems like a good thing. I'll get an official update in a few weeks, and then I'll answer the note. The next update after that will be in April, or perhaps I'll get a letter in reply. Even if I don't, I now feel like God has done God's job—and quite well, at that—for this phase of the adventure.

Monday, November 08, 2010

961. Storybook

So—back to the topic of this blog, sort of. Last week I led two shiva minyanim, both for a dear friend whose mother had passed away very suddenly. Despite the shock, this family was able to speak and let others into their grief—functional, unlike some others I've encountered who were completely frozen in pain. My friend shared wonderful stories of traditions that created memories and a foundation for everything that followed in her life; her words invited us all into that warm and loving place for a few minutes. It was a little gift of a kind of childhood for which I didn't yearn back then, but only later on when I figured out that other peoples' lives were different from mine: trips to new places, laughing crowds, patterns and rituals that continued with the expectation of never ending.

I would not change the way I grew up for the world. Yes, there was yelling and death and a small, often contentious little unit of us that never travelled further than the Bronx Zoo, but also a lot of love amidst the strife. It was rarely expressed in a storybook way, with big holiday dinners or group sing-alongs (although I'm working on an essay right now for my writing class about songs my father sang to me when I was really, really little, some of which have been re-appearing in popular culture and dredging up long-forgotten Russian melodies from the dustier parts of my brain). But I knew with certainty that my parents, aunts, and uncles, for the brief period I had them, had hearts bigger than the universe, and I was in the center of them all.

My friend's siblings span the spectrum of Jewish observance: far right, middle, and disdain for the whole business. And in their grief, differences became more powerful than all they shared: the outer two factions would not help those of in the middle (my friend and I) form a minyan. They found enough people on the nights I led, but not the others. This caused everyone a lot of pain, although not enough to cross boundaries of observance. Which would have been a betrayal of memory and tradition as well, I guess, so it really was a no-win situation. It also reminded me that even storybook lives have their torn pages.

Tuesday, November 02, 2010

960. She jumped!

Whew. It's taken me a while to catch my breath after the donation. Physically, it was over when it was over and all I had was a big bruise on my arm. But the emotional bruise was bigger; as expected, I felt adrift. But I was secretly sure that expecting the feeling would fortify me against it. Not so. Suddenly there was nothing to do but... nothing, no more anticipation, no needles to stick myself with, just waiting to find out what would happen. And the possibility that, worst case, nothing would—a month would pass, and another and another, and "my patient" wouldn't be ready for the transplant.

But last week I got my monthly check-up phone call from the blood center, along with some very good news: "the product was infused" last Wednesday. Whew! Suddenly the whole adventure seemed scarier than even a really, really big needle: she jumped off the cliff, no turning back. And part of me jumped with her. I was taken back to the surreal feeling of that very first phone call: how is it possible that my cells can rebuild the immune system of a stranger? And how in the world can part of me be inside someone I don't even know? But it is. My friends keep reminding me that they're prime, healthy cells, and so have a excellent chance of fulfilling their purpose. I can only hope and pray, and try not to let good or bad fantasies of what might happen get in the way of living with the kind of patience and strength I imagine my recipient must have learned over the course of her illness, and the waiting for last Wednesday.

Sunday, October 10, 2010

959. A list

Some random things, in no particular order, that are (in my opinion) more challenging than donating stem cells:

  • Having surgery of any kind
  • Root canal
  • Food poisoning/stomach flu
  • Ending a relationship
  • Beginning a relationship
  • Maintaining a relationship
  • Obtaining a college education
  • Working hard enough to pay all your bills
  • Putting together an Ikea wall unit from instructions in Swedish (unless you're Swedish)
  • Finding a job in this crappy economy
  • Being audited by the IRS (so I'm told)
  • Traveling anywhere by air, especially if changing planes is involved
  • Chanting Torah

So I encourage everyone who is physically able to register with the NMDP. If you've lived through even one of the things on this list, trust me—donating stem cells won't seem hard at all.

958. Post-donation

I came home and fell asleep, and made it to Shemini Atzeret services the next morning after 12 hours of unconsciousness. I felt quite rested, although my energy level was less than normal and I looked kind of out of it. But happy. I also had an enormous bruise on the inside of my left arm, thanks to two IVs, bandages, and anticoagulant. (Something similar happened years ago when I gave blood.) It hurt to straighten my arm or apply pressure above the elbow, even that of a long-sleeved shirt. It's much better as of this writing, a week and a half later—today was the first time I woke up without any pain from sleeping on it—but still does hurt and looks (in the words of a friend) like I was the victim of domestic violence. I'm sure it will be better by next week; I haven't at all minded this physical sign of my donation.

I came home, slept some more, and headed back to the synagogue that evening for Simhat Torah services. I was glad to watch the joy rather than participate; my blood dancing through a big machine the day before was quite enough activity. The following morning I did manage a few circuits around the Torot while being very careful not to bump into anyone. And when I came home that afternoon I was welcomed by a beautiful bouquet of pink and white roses, still open and alive more than a week later,  from the blood center. I've made a point every day since to stop and inhale their aroma first thing in the morning, even before coffee, and spend a moment in gratitude for my life and health.

During Hallel on Shemini Atzeret, the cantor sang a beautiful, slow melody I'd never heard before to these lines of Psalm 116:

Be at ease once again, my soul
For the Lord has dealt kindly with you.
He has delivered me from death,
my eyes from tears, my feet from stumbling.
I shall walk before the Lord in the land of the living.
I kept my faith even when greatly afflicted, even when
in panic I cried out: All mortals are undependable.


God did not deliver me from tears at that moment; I wasn't sure if they were from joy, awe, or something completely different. I became the transplant recipient, caught between death and life and trying not to panic. I prayed I would prove her wrong about all mortals being undependable, and that she heard the prayers so many friends in my community had sent out.

The next day was Shabbat Bereshit. After talking to a friend about how many people were involved in this one miracle—everyone from the scientist who invented the apheresis machine, to the nurse who connected the collection bags, to the coordinator at the blood center who put thorough the paperwork, and the list goes on and on, hundreds of people trying to save the life of a single stranger—he observed that it was just like the parasha itself, the beginning of a story that repeats as soon as we finish telling it. Constant creation, routine and amazing. I feel like I've glimpsed angels in the back room, a new part of God that had been hidden to me. And have received, as another friend put it perfectly, the gift of being able to turn my life into someone else's path.

957. Donation, day 2

Day 2 was less dramatic because I knew what to expect, although no less intense—but not hard at all. I took myself out for breakfast and ordered the exact same thing as the day before (scrambled eggs, hash browns), since it seemed to work well. I watched through the diner window as people sped past to get to work, and felt suddenly swept up in routine, as well. Except my work for the day happened to be donating stem cells.

I left the diner and tried to get a cab, but soon realized this was impossible during rush hour. So I took a bus to the hospital, instead, which did feel strange—a little too ordinary for the task at hand.

I arrived at 9AM and met my friend Y., who had graciously offered to sit with me for the day. Although they hadn't yet finished counting the cells by 9:30AM, I was hooked up to the apheresis machine just the same. The "in" IV was placed in my right arm after a few tries (my veins were not in terrific shape after a day of hard work) and the "out" in my left, as before. But after a few minutes the machine started to beep—my blood was not flowing through the needle. It and my arm were moved and re-adjusted every which way, to no avail. Then F., my nurse for the day, called over A., a distinguished-looking man with some sort of European accent and apparently the go-to-guy for such problems, and they decided my right arm was a lost cause vein-wise. The "out" needle would now go in my left—along with the "in," through a different vein in my hand. A nice side benefit: I would have complete use of my right arm.

So IVs were moved around with very little pain (although I wasn't exactly relaxed about the whole affair), blood began flowing, and all was well. Turns out my veins weren't at fault, but rather a small blood clot at the tip of the needle site that appeared before the anticoagulant could start flowing.

By then my cell count had come back from the lab; they had over half of what was needed, but decided to keep me hooked up for the full four hours. The rest of the day was just like the day before, except this time I was in a different chair situated right in the thick of things. After hour three I was again completely exhausted, but this time hour three coincided with lunchtime. Suddenly I didn't feel well—dizzy, lightheaded. Y. and the nurse reminded me to eat, and I was just fine after a few bites of tuna on whole wheat.

Apheresis machine, day 2
Finally, hour four—the machine beeped "DONE", and a woman in a white coat carrying a big cooler swooped in and left with the bag of my cells. I was steadier getting up this time—my body, and particularly my left arm, had gotten used to not moving. All three donor liaisons arrived as I got unhooked, like an official farewell.

I couldn't leave the hospital until my platelet counts were checked—below a certain level required that a nurse tell me officially that I shouldn't skydive, etc. So Y. and I, along with K. from the blood center, moved into the waiting room. A man sat there there as well who looked and sounded like my sort-of Uncle Ray (my mother's best friend's husband)--tall, bald, amiable and funny. We all got into a conversation about the weather.

Suddenly K. stared at the man. "You're the courier, right"? she said. He nodded. (I assume she recognized his voice from phone calls.) This was the person who would hand-carry my stem cells to wherever in the world they needed to go. I don't think we were supposed to meet, and soon the conversation grew more circumspect, no mention of cities or names. C. returned with my blood counts—low, as expected. (They would be back to normal in a week.) F., the nurse, came over to remind me not to operate heavy machinery. I was glad to go home, although didn't want this adventure to end just yet—but I had the distinct feeling they were rushing me out, in case inadvertent clues were leaked about the destination of my cells. K. offered to get me a cab, and I gathered my stuff.

As I walked out the door, I turned and looked Uncle Ray straight in the eye. "Thank you," I mouthed. He nodded.

956. Donation, day 1

(Probably more detail here than anyone cares to read, but I wanted to capture a picture of the entire process.)

It feels like yesterday... it feels like years ago.

My friend Z.* gamely showed up at my apartment at 7:30AM, I picked up a sandwich at the deli for lunch, and we jumped in a cab get to the hospital by 8. Trying to write a note to the recipient kept me awake for most of the night before, but I was too excited to notice I was tired. We were greeted by S., the blood center liaison I met during my very first set of tests back in May. I was given a slightly-too-tight wrist ID band, and a finger stick blood test at the lab down the hall. Then C. arrived, the sweet gentleman from the hospital's donor center, and we headed down another corridor for my final Neupogen injection.

A nurse took my temperature and blood pressure, and I got on the scale. I had gained a pound since last week (they weighed me right before the first shot). No big surprise, I thought, considering all the Chinese food I ate that past weekend.

"Those are the stem cells," said C. "Your bones are literally heavier now." (Just as the verse from the Yom Kippur haftarah predicted.)

I was also sniffling, and my chest was congested. "You look like you have a cold," C. observed. I felt fine—but thanks to that massive amount of white cells, my body was trying to fight something off even though there was nothing to fight.

Another nurse arrived, the same one who had taught me to stick myself with a needle. She went through a checklist of side effects, and the answers were the same as the previous four days; a little achy, but nothing too bad. Did people usually have a lot of pain, I wondered?

"Only the men," she answered. "Cops and firefighters, big strong guys. We women are a lot tougher!"

She gave me the final two shots, and then S., Z., C. and I headed outside to a deli for breakfast. (NMDP protocol requires waiting an hour between the last Neupogen injection and the start of stem cell collection; other donor registries have different rules.) I had a big order of scrambled eggs and hash browns while admiring photos of C.s daughter, and then we all headed inside to the blood bank. A nurse asked more questions (no, I have not become a drug addict in the past five days), checked my temperature and blood pressure again and another finger stick to test hemoglobin, and began to affix little ID stickers to a pile of paperwork.

This is really happening, I thought. Soon I will be stuck with big needles. I had a sudden impulse to run back outside, maybe grab a coffee and bagel and sit in sunlight in the park. But the room began to spin before I could do any of those things.

"I'm a little dizzy," I said.

The nurse looked at me with alarm, darted out of the room, and before I could blink returned with Dr. D., in charge of the blood bank. His face radiated calm and confidence. "Have something to drink," he suggested. The nurse handed me a bottle of water. I took a sip, but by then the wave of irrational fear had passed, vanquished by the doctor's smile.

E. would be my nurse for the day, and he directed me to a comfy chair in the corner that looked like a cross between a hospital bed and Business Class. I climbed in, buttressed by pillows beneath my arms and behind my neck, and he began to describe the process while preparing needles, tube, dials, and other mysterious objects. (And I climbed out twice more to use the restroom. Four hours is a long time.) I was still nervous, even though I knew I was in the most competent hands in the country, maybe the universe. My cell phone rang: my rabbi, reminding me that the recipient and I were in everyone's prayers. (I think God must have whispered in his ear: "Right now is when she needs to hear it." It worked. I relaxed.)

The doctor, along with a bright-eyed, bushy-tailed young man I gathered was an intern, came over before I could get nervous again. For the next 15 minutes Dr. D. explained the workings of the apheresis machine in detail: how it would separate my blood into red and white cells, the latter containing the stem cells to be transplanted, and then return the red cells to my body along with Citrate, an anticoagulant, and calcium to counter a side effect of the Citrate. I should tell the nurse if I experienced any side effects of calcium loss such as numbness of hands, feet, or face. I asked my burning question: how did the machine know which were the stem cells? It didn't, he explained. It was a centrifuge, so separated cells by weight—and so know how to grab the white cells. But they would look red in the collection bag, since the machine wasn't quite smart enough to filter out all the red cells.

All the blood in my body would go through the machine 2 1/2 times each day. At any given time about 10 oz. of my blood would be in that machine.

Dr. D. and intern left, and E. prepared the IV. My right arm would be "out". I closed my eyes and took a deep breath, and felt a little needle prick in my left hand, a.k.a. "in". This was where my blood would return—minus the stem cells, so a smaller needle was just fine and I'd also have some mobility to do things like scratch my nose. It hurt a bit until he taped it down, and then I didn't feel a thing.

Then he went to work on the "out" arm, a bigger needle (to transport that pound of extra stem cells) for the vein in the crook of my arm. He stuck me—not nearly as painful as I feared—and then un-stuck me. Even though the nurse declared my veins to be in excellent shape not just once, but twice, and I'd spent the weekend drinking gallons of water to make them as plump as possible, they were not cooperating. He called over another nurse, and they bent intently over my right arm—and suddenly it was taped. They had poked around and found a better vein before I could even notice.

The machine began to hum, kind of like the rumbling of a subway or laundry room, and I saw a clear liquid drip into the bag closest to me.

"Those are the stem cells," said E. I said a Sheheheyanu prayer: thank you for this new season, this new beginning. Then my friend Z. came over and sat patiently for the next four hours, providing excellent conversation as nurses adjusted dials, straightened needles, hung new bags of liquid, checked my temperature, recorded numbers on forms at a little rolling table, and asked about side effects: none at all. (Thanks, I think, to the massive amount of calcium-rich cheese I consumed that weekend.) Although I wasn't cold, another possible side effect, I was grateful for the tip I read on a donor blog about wearing socks, since the blanket over my feet had to be lifted to get my blood pressure from my ankles (since my arms were otherwise occupied). Every once in awhile Z. and I stared in awe at the aphereis machine. (On Thursday at Shemini Atzeret services, I kept seeing it in my mind's eye whenever God's name was mentioned.) Meanwhile, the blood bank swirled with activity: a man in the next bed donating stem cells for an autologous transplant, his wife hovering patiently and nervously. Something important happening behind a curtain next door, nurses with masks going in and out. All the activity seemed routine and well-rehearsed, despite being miraculous.

I tried unsuccessfully to write emails on my iPad with two fingers. (By day 2 the iPad was a celebrity, with Dr. D. and E., the nurse, debating if it needed a phone or camera.) I did not watch any episodes of "Lost," as planned, since I had no attention span whatsoever.

Soon I barely noticed there was anything stuck in my arms. And I had no sense at all that blood was leaving my body and returning at a rapid rate. At about 1PM I managed to eat a sandwich with one hand, followed by a chocolate bar kindly provided by C. After hour three, I suddenly felt exhausted and could barely keep my eyes open. The nurse explained that my heart was working harder than usual to pump all that blood, so it was like strenuous exercise without moving at all. But I forced myself to stay awake, since I didn't want to miss a thing.

Soon another nurse came by and did some quick calculations: amount of stem cells needed divided by rate of blood flow = remaining time. Just a few more minutes. Then the machine flashed "ALL DONE!" (or something to that effect), and I closed my eyes and took another deep breath as the needles were un-stuck and neon pink pressure bandages applied. I couldn't believe four hours had passed; it really seemed like no time at all.

I swung my legs slowly over the side of the bed and waited for the room to stop spinning. I put my feet down on the floor and they felt different than at the beginning of the process—lighter. I could tell immediately that something was gone from my body. I stood up and shuffled across the room to the bathroom (all that anticoagulant did take its toll), and then out into the waiting area. After a few more minutes to make sure I was intact, and a big piece of chocolate cake courtesy of the blood bank, Z. and I hopped into a cab back home.

I tried to answer emails later that afternoon, and even managed a few phone conversations, but by 8PM felt like I had run a marathon. S. called to let me know that they hadn't finished counting the collected cells, so I should come back at 9AM the next day to find out how long I'd be needed on day 2.
-----
* Because most of my friends seem to have the same first initial, I've picked random initials for everyone. They know who they are, which is what really counts.

Saturday, October 02, 2010

955. Done!

Full story to come, but briefly—all done! Intense and exhausting (even though I just sat in a comfy chair for many hours each day and listened to the big chugging machine give my blood the best exercise it ever had), but not hard at all. I experienced no side effects, and they were able to harvest even more cells than needed. (See below, the bag on the far right, about 2 hours into the process on day 1.)

A longer description to come soon. Hoping everyone had a joyous Simhat Torah filled with dancing, singing, and all sorts of new beginnings.

Sunday, September 26, 2010

954. Handicapped bathroom

Yesterday, as planned, I spent part of the day with old friends at a place where a nurse could not come to give me the second Neupogen shot. One of these friends, whom I hadn't seen in about 25 years, was a doctor, and she agreed to supervise as I self-injected.

Soon as I arrived, we headed into the women's handicapped-accessible bathroom. "Wow, I can't believe it's been so long!" I said, and then pulled down my pants and began to laugh. It was, by any stretch of the imagination, a ridiculous situation. My friend, very serious back in the 80s and, I soon discovered, even more so now, didn't find it funny at all, which made me laugh even more. I quickly composed myself and laid all the injection paraphernalia atop the toilet tank.

I was able to fill the needle with medicine, but was very grateful for her presence—I didn't realize that you have to keep pushing and depressing the plunger to get the air at the top to disappear. The first shot was easy, but halfway through the second I had a moment of panic that that the needle was going was too far into my thigh, and froze. Very eager to leave the bathroom ("People might get the wrong idea!"), she pushed my hand away and finished pressing. She was already gone by the time I pulled the needle out. (She did eventually laugh about the whole thing later that afternoon.)

I felt just fine afterwards—tired, a few twinges in my legs. Woke up this morning without any pain. A chatty and pleasant visiting nurse arrived at 9AM to give me day three injections, along with a story of the famous bone marrow donor she visited a few weeks ago who got both their photos in the paper. My lower back, legs, and right shoulder did begin to hurt a few hours later, as if I had slept funny or overdone it at the gym. It was impossible to find a comfortable way to sit on the couch, but the floor was just fine. And the pain went away entirely after two extra-strength Tylenol. Now I'm kind of stiff, and glad I don't have to take any long walks.

Tomorrow, lots of distracting work and then I have to write a note to give to the recipient. And download some movies to my iPad. And then I show up at the hospital Tuesday morning at 8, bringing layers of clothing because I'll probably get cold during the donation. (But how will I put on a sweater if I have IVs in both arms?)

953. Dart

On Friday morning I left Sukkot services early and, lulav bag in hand, got on the bus to the hospital to meet C. and K. for my first Neupogen injection. (K. was the person who called me that very first time in March, and whom I didn't believe.) They shepherded me through a finger stick to test my blood levels, and then we headed to a room down the hall to wait for a nurse. Someone came to take my vitals (how I managed to lose a pound during the holidays is a greater miracle than matching to be a donor), and then A. arrived.

I cannot imagine a better nurse to teach someone known to faint at the sight of blood how to inject herself with a needle, as I would need to do for the second shot. A. looked very much like an actress whose name escapes me: Jamaican, no-nonsense, perpetual smile, drily honest sense of humor. "I gave myself shots seven times a day when I was pregnant," she said. "I'm a nurse, and it was still weird. But you can do it." This was not resounding encouragement. C. handed me a big envelope with the paraphernalia required by both myself and the nurse who would administer the third and fourth shots. He removed the needles, which I was surprised to discover weren't pre-filled. ("We're old fashioned," explained A.) I'd need to stick two of them into two separate vials, and then stick myself twice in the thigh. It was awkward to hold both needle and vial while pushing the plunger, and I had a moment of fear when she explained how to tap it to get rid of air bubbles—wait, isn't that how people commit homicide (at least on House, M.D.)? Thankfully, not a danger in this case. (I probably couldn't even give someone a mild headache with that little needle.) An air bubble would cause a bruise, nothing more.

"Just pretend it's a dart," suggested A., and grabbed a chunk of my thigh to demonstrate. Suddenly the needle was in; I barely felt it. (Never before have I been grateful for the abundance of flesh on my thighs.) I depressed the needle, just a little sting. I got up and filled the next needle, and then sat down on the table and stuck myself. Actually, I stuck myself and immediately pulled out the needle, almost a reflex action. The second try was successful, and I pushed the plunger. This one stung a bit more, since there was more medicine in that vial, but really wasn't bad at all. I think the trick is in not thinking about the fact that you're sticking a really pointy needle into your body.

I looked up and A. was beaming. "Excellent," she said. I felt very proud.

So I went back home with the next three days' worth of drugs and a prescription for Tylenol 3, as well as a goody bag filled with rainbow-colored candy, more Tylenol, a little "Be the Match" lapel pin, a sweet thank-you card signed by everyone at the blood center office with a free movie pass tucked in and, best of all (since it was 2:00PM by then and I hadn't even had breakfast) a big dark chocolate Hershey bar. I ate half, followed by a slightly healthier omelet. K. explained that the anticoagulant administered during the donation would leach my body of calcium, so it wouldn't hurt to beef up beforehand. So I went to the store and treated myself to three kinds of cheese.

Then I waited for the side effects. Some discomfort on Sunday and Monday would be a good indication that the Neupogen had "mobilized," i.e., was doing its job to send my white blood count to the moon. I could expect pain my lower back and sternum, major sites where stem cells grow. Went home, took a nap, then walked to Friday night services and dinner with friends. All was well except for a strange feeling of my feet being very heavy, and I think I was a little dizzy—but that might have been all in my head. I had a lovely evening but was distracted by worrying if and when those symptoms might start, so left early and slept really well.

"Sukkot is a holiday of the body," observed the rabbi at services on Thursday. On the High Holy Days we immerse fully in our spiritual lives to contemplate past and future—but on Sukkot we can actually touch the fruits of those ideas. We grasp and shake the lulav, inhale the aroma of the etrog—in mystical interpretation, representations of the spine, eyes, mouth, and heart—and connect to heaven and earth through a very physical ritual. Another reason why Tuesday, the sixth day of Sukkot, seems like a good time for the donation.

Wednesday, September 22, 2010

952. 99.9%, part 2

(Continued from here.)

At the hospital, C. told me that the recipient was about to start the transplant preparation regimen that same day—chemo and radiation to destroy her immune system in preparation for the healthy stem cells that would rebuild it. No turning back after that for either of us. So this was the last thing I expected to hear on the other end of the phone:

"I'm so sorry. They want to postpone the donation."

Seems the recipient was on a drug regimen to improve her condition, and a few more weeks would help even more. Was I available next month? Of course, whenever needed. But I was all psyched to get it done already. And my friends were psyched for me; now I'd have to tell them it was another false alarm. Boy, did I feel petty. Someone else's life was at stake, and the only thing I could think about was my own schedule and Facebook status.

But that really was all I could think about.

Before I could continue to dislike myself and add to the long list of items requiring breast-beating in a few days, the blood center lady continued: "There's another option. You could donate now, and they'll freeze your stem cells and transplant them in a month."

Yes, yes, I want to do it this way, I said, even before she finished the sentence. Sleep on it, she suggested. No need for an answer right now. So I pondered, and waffled: October, without the added complication of the Jewish holidays, was more convenient, and it also would be a little more dramatic in Grey’s Anatomy style: donation done, they’d whisk away the bag of cells and new life would start flowing through her veins within hours. Cut to commercial. Yeah, right.

One of the things I hate most, aside from anchovies and cigarette smoke, is indecision—but I was completely stumped, even more so that the situation warranted. Either option was fine with respect to the recipient's heath, or they wouldn't have left the choice up to me. But at that moment, maybe because Yom Kippur was right around the corner, I was desperate to make the decision for the right reason and not just the most expedient. I spoke to a number of very wise people, and interrogated the blood center: are you sure frozen cells are OK? Yes, and she was deemed an excellent candidate for that process, not always the case. I lost a night's sleep, and realized that patience was something I needed to work on in the new year.

Then a friend posed a question: will the recipient be told about your advance donation or find out only when she was ready for the transplant? I thought about how this woman might feel, twice turned away at the edge of a possible new future. If she knew my cells were ready the second she was, no need to wait or wonder if I'd lose patience and decide not to donate, maybe this would give her even more hope and strength.

I confirmed that she would know in advance, and it became a much easier decision. On Friday I’ll get the first Neupogen injection, and everything is set for next week as originally planned. On the same day this last bit of drama unfolded, I was also asked to read part of the Yom Kippur morning haftarah. This was one of the verses:

The Lord will guide you always.
He will slake your thirst in parched places
And give strength to your bones.
You shall be like a watered garden,
Like a spring whose waters do not fail.
—Isaiah 58:11

So maybe now, and not next month, is the right time for that added strength in my bones, so they can become a spring.

Hag sameah, and wishing everyone a sweet and happy Sukkot.

Monday, September 20, 2010

951. 99.9%, part 1

I took these notes last Monday morning:
_____

9/13, 10:30am

Sitting in the hospital's cancer treatment center waiting room waiting for the donor liaison, who will shepherd me through repeat blood tests. Other people here with colorful scarves on their heads, walking in and out wearing surgical masks and beautiful but obvious wigs, some smiling, sone stony-faced. And others, like me, whose reason for being present can't be guessed from appearance alone.
_____

Then C. arrived, and I had stop writing. And it seemed there wouldn't be much of interest to say until the donation, because the tests were uneventful--5 more vials of blood (a breeze!--I think I'm finally cured of my fear of needles), another nurse poking the crooks of my arms to assess the state of my veins (could they have changed from a few months ago?), more of the same questions about travel, drug use, and sexual history (just as boring as back in May). "So this is really, finally going to happen?" I asked. "Yes," said C. "100% sure."

The blood bank head nurse also gave me a little tour of where I'd hang out all those hours, a subterranean but cheery room bustling with energy and purpose. She explained that a new blood bank was being built, but for now the only window was a painting donated by a former patient, a beach scene in tropical colors that would be visible from my bed, the one next to the big, noisy Frankensteinian filtering device. (Otherwise known as an apheresis machine, aka thing that performs miracles. I made a mental note to ask someone to explain, over the course of the 8 hours I'd be tethered, exactly how it knows which are the stem cells.) It was reassuring to see that exact spot, and be reminded that this event was routine for everyone except me. (In the next bed was a bored-looking teenager hooked up to an iPod and cell phone as well as a central line. The nurse explained that she was getting an infusion to treat a neurological disease. All in a day's work.)

The nurse also reminded me that I wouldn't be able to go to the bathroom for 4 hours, so not to drank any coffee beforehand. I think this aspect of the experience makes me more nervous than anything else. But I'll live.

By then the blood tests had been rushed through, and C. reviewed them: no change, all was normal. He also volunteered the weight of the recipient, more than mine, and explained that this meant a large number of stem cells were needed and so the donation might take the full two days--unless my blood decided to flow quickly. An anticoagulant would encourage the process. (I wonder if the rabbis ever devised a prayer for fast-flowing blood? Maybe one of those psalms that compare life to a swift stream would do the trick.)

(It's strange to know nothing more about a person than age, illness, and number of kilograms. When I told some friends, they got worried--she needs to lose weight! It can't be good for her health! Then we considered the possibility that she was taller than I was, as is the case with much of the world. And then we realized how ridiculous we sounded.)

I got back home and reviewed the facts; tests OK, person in charge said it would definitely happen. I had told some friends about the whole saga, but not everyone. This seemed a good time to share the news on Facebook.

I posted, and comments started coming in--yes, it's amazing.

And then the phone rang, a familiar area code. (Continued here.)

Sunday, September 19, 2010

950. High Holy Days 5771, part 3

I hope everyone had an easy fast. I did; just a little thirsty, and not hungry at all. (Although my stomach did begin to rumble in the morning during Sh'ma Koleinu, which I hope the microphone did not pick up.) I'm sure my relative comfort was due in part to the three large meals I had the day before, and also because I was simply too focused to want to stop and eat. I know all the halakhic reasons for fasting, and they make perfect sense, but I think I finally, truly understand why we do it. Meals, even when experienced alone, are social events. You're ether with and talking to people, contemplating them, or buried in a magazine, fork in the other hand, reading about how much better other people's meals are than yours. Rarely is eating a thoroughly solitary experience during which one ponders future life and death, as is our task on Yom Kippur. (If we had to think about those things at meals, we'd probably lose our appetites.) Community surrounds us like a cocoon on Yom Kippur to create a safe space in which we can experience the deepest, most intensely private prayer--much less likely to happen if we had to keep interrupting ourselves to eat, especially in the usual, social way. There's also the convenient side benefit of hunger, lightheadedness and the altered state of feeling empty mentally as well as physically--all the better to allow prayer to flow unimpeded.

Whatever the reason, I did have a tzom kal [easy fast], and a few of those scary but good naked moments: God, I've run out of words to enumerate how I've screwed up. Please just extract them from me. I know it's painful surgery without anesthesia. That's OK.

I don't have much to write about singing this Yom Kippur. There were neither catastrophes nor unintended drama (aside from a few minutes at the beginning of Shaharit at Big, Fancy, New Theater when I couldn't hear the musicians, who were playing a little too sensitively for the world-class sound system to pick up. After some dueling key signatures between bimah and band, they turned up the volume and all was well.) I tried to wring out every bit of myself, and also remembered to breathe. I felt like I was having a conversation with all the people I couldn't join for dinner, a thousand friends in the same boat. It was a two-sided dialogue even though I was way up front, their presence the most comforting thing in the world, and the answer I was looking for. Later that the day at Minha at the Usual Church, I quickly realized I wouldn't use up my remaining energy; great stores of fumes remained even after the fuel tank reached "E". But I tried.

I spent the entire Yom Kippur with the same rabbi, which is unusual (because I was switched to Big, Fancy theater at the last minute for Shaharit. Although a million other reasons could be at play, I think it's because someone was suddenly unable to chant half the haftarah, so I was asked to fill in. Which was also fun—although there sure are a lot of words to fit into the melody in that last paragraph of Yom Kippur-specific blessings.) It was nice to have the privilege of standing at this rabbi's side throughout, her continued presence welcome stability, because I hit the jackpot this year—four services over the Yamim Nora'im at four different locations. Usually I get to lead in one location more than once—not this time, although I felt equally at home everywhere, having logged lots of prayer in each place. I was reminded that Judaism is a religion of time, not space—with the right intention, anywhere can be holy. This year the entire Upper West Side (and a little below) was my synagogue, its walls defined by the crowds on Broadway, oblivious to the holiday but still sharing it with me as I walked home after Kol Nidre on Friday night, as well as the tall stained glass windows of the sanctuary where we usually pray, hiding the outside world but letting in just enough light so that we couldn't forget it, either.

Monday, September 13, 2010

949. Dog with a log between its teeth

In just a few hours I head back to the hospital for a re-do of all those blood tests from last May, just in case I met up with a nasty mosquito during a recent weekend trip down the Amazon. (Not.) Assuming all is well, my first of five Neupogen shots will be on 9/24; I'll need to leave second day Sukkot services early in order to get to the hospital on time. After five days of injections, my stem cells will be practically leaping out of my bones, and hopefully not causing any discomfort in the process.

The next three shots were to be given at my home by a VNS nurse. Inconveniently, I have plans to be elsewhere on 9/25. I usually stay close to home on Shabbat but this was a special occasion, in the works for awhile. Someone else could give me the shot, which is subcutaneous and not intravenous (i.e., the kind of needle you stab yourself with in the arm or thigh, like a diabetic does with insulin), but that person would first need to submit credentials to the donation center and be thoroughly vetted. Of course this makes sense, but is also a big pain. The other option, which a few dear doctor friends convinced me is perfectly feasible, is to give myself the injection. Needles give me the creeps, but I opted to go this route after a dozen phone calls failed to identify a suitable injection-giver. They'll teach me how to do it at the hospital, and send me home with a cooler full of drugs and gel packs. One of the friends I'll be with is a doctor herself, so can supervise.

Or I might decide to skip the event, which will require stamina and some running around, and just lounge around at home that weekend. I have 11 more days to decide; it wouldn't be the end of the world, and would probably be the spiritually saner course of action. I was originally set to read Torah on the second day of Sukkot, too, but some people far wiser than I suggested I focus my kavannah on the impending donation rather than on vowels and trope. To be honest, I haven't been able to focus on much of anything for weeks. I've cranked out some less than brilliant work, paid bills, gone to the gym, all the usual stuff. But a good chunk of my brain is floating in a fog somewhere above. Often it feels real, other times utterly impossible and I wait to wake up, but then it's real once again and all I can do is smile and marvel, or sing. Rosh Hashanah couldn't have come at a better time.

The other day I wondered if this is how parents or pregnant women might feel, a mixture of awe and a massive sense of responsibility. (How I wish I could ask my mother; oddly, coincidentally, I am now the same age as she was when she had me.) But then I decided it fell into a category all its own. Unlike a child, we are both responsible; the recipient of my stem cells chose to place her trust in a complete stranger. I can't imagine a braver act. Maybe I'm reacting as a surgeon or cop might, or that guy on the trapeze who catches the other guy by the wrists after he flies through the air. There is no way to sufficiently rise to the responsibility of embracing so much trust. All a person can do is keep living and breathing and doing her best, and God will take care of the rest.

On the way to services the other morning I passed by a big, scary-looking man walking an even larger scary-looking dog. The dog was also armed, in case they were not imposing enough, and held a log, the trunk of a small tree, in its jaws. Man and dog trotted past, and I gave them a wide berth on the sidewalk. And then they were gone, no harm done. I think that's how the donation will feel: some shock, excitement, a little fear, and then--done. Meanwhile, I finally fixed the alarm clock in my bedroom to display the actual time after years of keeping it set to seven minutes ahead, or maybe it was six, which I thought helped stop me from being late and forced me to rush, since I could never be sure of the actual time. But in reality I just subtracted six or seven and went about my business. Now, instead, I will be forced to focus on the present moment alone.

Sunday, September 12, 2010

948. High Holy Days 5771, part 2

The holidays, so far, have been calm and ecstatic, like fireworks contained in a careful, hand-made box. It feels like we--rabbis, congregants, musicians, me--have figured out how to breathe in safe places despite the unsettled turn of world events these past few months, and so are free to enjoy the music and try to renew no matter what. Or maybe we just know our parts a little better now. And it's two days post-Rosh Hashanah and, miracle of miracles, I do not have a cold (knock wood, p'tui p'tui, evil eye begone! and all those other things other people's grandmothers used to say), reason enough to exult and relax. On Tuesday I have a Yom Kippur rehearsal, since this year I'm back to leading both Shaharit and Minha, followed by copious amounts of deadline work until the edge of Kol Nidre. But I'll be fine. And tomorrow morning, repeat blood tests to make sure all is well for the bone marrow donation (more about that in another post). A week overflowing with the sacred and ordinary, no better preparation for approaching those open gates.

Meanwhile, one of my favorite voices of all time (aside from the cantor at my synagogue) sings a song my father used to, a tune buried so deeply in my past that it took a few hearings of this link forwarded by a friend to understand why it made me shiver and become unbearably sad--and happy, as well, the echo of childhood and sensation of being embraced by the compact, muscular arms of an off-key, deeply resonant bass with a rakish mustache and always a few Hopjes candies in his pocket:

Paul Robeson, Song of the Plains

947. High Holy Days 5770, part 9

A little out of sequence, sorry, but I wanted to finish last year's story, continued from here:

Gallons of water and the threat of noxious potions did the trick, and I still had a voice when Yom Kippur arrived. The evil bug hadn't left me unscathed, however. In its wake remained a throat that felt like brittle parchment no matter how much liquid I poured down it. But I could sing just fine, and only coughed--violently and endlessly--on occasion.

The service went well, and the Louds even held their tongue. Then we got to Besefer Hayim, almost at the finish line, right before the changing of the guard (someone different would lead for Musaf). I began to sing and suddenly couldn't catch my breath, as if my vocal cords were feathers attempting to rub together fast enough to start a fire. I put down the mic, walked over to the edge of the bima, and faced left as far as possible without actually turning my back to the entire congregation, and pretty much coughed my lungs out for about a minute. The rabbi and everyone else kept singing, and I think only the people in the first row noticed anything was amiss. I recovered my composure just in time for Kaddish Shalem, grateful that the fit didn't happen during Hamelekh or another less participatory part of the service.

946. High Holy Days 5771, part 1

It was magnificent. This has been the most relaxed holiday by far in the seven years I've been helping to lead. I had just one rehearsal on Tuesday--Rosh Hashanah began on Wednesday--basically a reunion with old friends. (Although the run-through was invaluable, since the same questions popped up this year as always: how many lines of intro before Psalm 150? will you play "A" or "B" to start off L'el orekh din? and a few others.) But my alter ego Ms. Paranoia (when will they send that email with the assignments? did I delete it by mistake? did they change their minds? what did I do wrong? and other nonsensical thoughts) disappeared the minute I opened my mouth.

I was at the Theater With the Zipper for Day 1, much less cave-like than I remembered. Even though years had passed since I'd last been inside, the big, concrete space was comfortable and familiar, and oddly intimate. The zipper itself advertised an upcoming movie, which seemed OK since it was, after all, a festive holiday. My only surprise was being asked to gabbai, not stressful since the Torah readers were among the congregation's most perfect and experienced. Maybe one day the rabbis will remember that I don't actually know High Holy Day trop. (Or maybe one day I'll learn it.)

Day 2 was at the synagogue, which felt like I won the lottery. (I did, sort of; hazzanim are assigned locations on an eminently fair rotating basis, and I guess it was my turn.) It was comforting and exhilarating to pray at home in the glow of walls alive with vines and jewels of deep red and gold, and the breath of hundreds of friends close by rather than a few feet below (the one drawback of being on a theater stage).

Life would be boring without a few challenges, however. Before we walked out front, the rabbi asked me to remind him where the service began.

"Page 58," I answered. Hareni mikabelet, as always: love your neighbor as yourself. Now, sometimes we don't start here; there's often improvising and extra niggunim on Shabbat. But we always follow the script on the Yamim Nora'im, because the instrumentalists have music in front of them and there's no way they can keep up if we skip around.

Since the rabbi did ask me to confirm page 58, and we had begun with page 58 for the past six years, I felt pretty confident that I could start singing on page 58. I took a deep breath. And then the rabbi reached over to my mahzor and turned the page.

"Here," he whispered, pointing to the Birkat Hashahar, the morning blessings. The musicians, who are all geniuses with ESP, saw what was going on and turned their pages as well, and began to play. My early-morning brain was still expecting to follow the script, however; I was very flustered. But I recovered and found my place after a second or two, since page 60 is my favorite melody of them all, and the rabbi would alternate verses with me. That would give me a few moments to compose myself.

Except he did not come in at verse 2, or even 4 or 6. I paused before each "Amen," not wanting to step on his toes or show inadvertent disrespect if, in fact, he chose to sing. But he was clearly deep in concentration and happy to let me do my thing. Almost at the end, I realized that I could have been having a lot more fun had I worried less about following rules and more about breathing and praying. Fortunately there were still a few verses left.

The blessing before the Shema took us on another brief adventure to the wilds of keys as yet unexplored. Then the rabbi prompted me to sing the hatima, the last line, in High Holy Day nusah as always. The good angel on my right shoulder hummed the correct note. The other little guy on the left disagreed: sing higher, it's more fun! I succumbed to temptation, and for a split second forget that it wasn't an a cappella service. And then I took note of the strange, new tonal world where I landed, and got very disoriented. (I also remembered that the cantor, who would be leading Musaf, was sitting a few feet away. I knew he knew exactly what was going on.) I stumbled on a few words but made it safely to the end when, gratefully, we all covered our eyes as the rabbi chanted. I asked God to have the keyboard player come in for the next hatima and, sure enough, my prayers were answered.

The rest of the service proceeded without a hitch. This rabbi, unlike the others, chooses to face the Ark for the entire repetition of the Amidah, not just the Kedusha section. There are few other more comforting sensations in life than the crush of a roomful of souls at your back, holding you up as you sing.

Saturday, September 11, 2010

945. Nine years

I generally wear sunglasses when it's very bright out, but only during the summer. September light doesn't bother my eyes as much--and I like being reminded that short days are still full of sun.

But I grabbed my sunglasses this morning, just in case. And as soon as I got outside and saw the perfect blue sky, not a single cloud, just a slight breeze and maybe you need a light sweater in the shade, I put on the glasses. They changed the sky to a warmer color, closer to July, as if the summer were just beginning, and allowed me to enjoy the walk to services and put off thinking about the pain of this day for a few more minutes.

Last year and the year before weren't so bad. Time seemed to be healing; we were sad, but also learning and growing. Moving on? I don't know--does that ever really happen after a death, or is it more a case of getting used to the tear in one's soul and figuring out how to move around it so the acid only splashes on the edges?

But today, this month, this year, is different. I've never before felt such fear and hatred in the air. Maybe our collective recovery was too fast, and we've relapsed back to those days right afterwards when we stayed awake to keep vigil until the next evil thing fell out of the sky. Or the pace of life has become so quick and unforgiving that the comfort of past flaws seems safer than any kind of change.

At services last night, the rabbi recalled a conversion with a bar mitzvah right after the attacks. What do you want most? he asked the boy. I want it to be September 10 again, he answered. So here it was 9/10 once more, right on the cusp of a new year full of hope and promise, and I thought back to that day before. I was lucky; my life didn't change dramatically in those 24 hours. I was as unemployed before 9/11 as after. (If anything, the sudden, grim economic situation gave me the push I needed to work for myself, which would otherwise have been way too scary.) I lost no loved ones, and had friends and a community to rely on. I am still basically the same person, just older and tireder and a little less trusting.

So I wonder, as we plunge into 5771, what it does take to change? If I--we--can so quickly resume our old lives after the murder of neighbors and threat of war in our own backyards, and then even forget that we were once the persecuted strangers ourselves, is there any hope that we'll ever learn peace? I think so. I want to believe there is. At an interfaith memorial service this morning, where my tears stained the same pews as on that evening nine years ago, the minister of the church whose space we share offered an apology. For years, he said, he listened as his friend the imam (who couldn't join us today because he had to stay at an "undisclosed location") apologized for things he didn't do, sins committed by others who shared his religion in name only. Now, said the minister, it was his turn to do the same, because real Christians do not hate. Then my rabbis led us in song and the Mourner's Kaddish, and I remembered that real Jews don't hate, either. Or real, ethical human beings, whatever they might think about God. This "new normal," the return to comfortable, familiar fear, is not normal at all, and it gave me hope to be in a sanctuary filled with others who knew this as well. I hope and pray that someone can figure out how to slap this entire country in our collective face and make us all understand.

Wednesday, September 08, 2010

944. A new song

From the Reform movement's daily email "Taste of Torah" this past Labor Day:

"During these High Holy Days, we are surrounded by the teachings of Torah and the prayers of our services, and one hopes that we are open to hearing them as well as the voice within. Listening is an art; we all hear the same words of Torah but may hear them in very different ways. The way we hear or give ear or understand our encounters with God can never be fully described to anyone else, even as we strive to transform the mundane into the spiritual and achieve a sense of the sacred through the way we live our lives on earth."

--Rabbi Elliot L. Stevens is the rabbi at Temple Beth Or in Montgomery, Alabama.

Wishing everyone this Yamim Nora'im the gift of hearing something new, and the ability to use our own voices to bring those sounds to life. Shanah Tovah!

943. Awe immersion preparation

(Trying to catch up on some pre-holiday posts before the holiday appears in a very short time.)

Selihot on Saturday night, the final stretch of awe immersion preparation. We studied and sang two piyutim, liturgical poems: Ahot Ketana, traditional for that day, to a Moroccan melody, and Leka Eli Teshukati, often sung prior to Kol Nidre, with a tune from the Jews of Greece. Gorgeous, flowing music set to texts about how desperately, almost agonizingly we yearn to connect to God. But the tunes are infused with joy, no pain at all.

I didn't grow up with music from that part of the world; it's not my tradition at all. If music were like food, then it wouldn't be entirely kosher for me to embrace these sounds. You can't decide to become Sephardic at Passover just to be able to eat kitniyot, for example. Born Ashkenaz, you're kind of honor-bound to stick to those customs. Thank goodness it doesn't work like that with music, because I am not the biggest fan of the sounds of my most closely relsted forebears. On Saturday night I watched the end of an excellent documentary about a well-known cantor whose passion in life is to spread the joy of hazzanut--excuse me, chazzanus--the traditional plaintive, operatic and melodramatic style of cantorial singing popular in Eastern Europe for a few centuries, and then in the US as Jews flooded these shores. It's still the sound most people associate with cantorial music, althoug few cantors sound like that anymore.

I am grateful to this musician and his colleagues for helping insure that this link to our past doesn't become a dying art. But I'm also very glad that fewer hazzanim, at least in liberal Jewish circles, sound like that. I don't like it at all. In fact, I hate it. There, I've said it, and pray that the combined force of my ancestors rolling over in their graves won't knock me over. As soon as I heard the first florid, kvetching glissando escspe this cantor's mouth, I was transported to the time in my life when Judaism was a spectator sport dominated by mumbling old men. (I like it even less when sung by a woman; there were a few examples of this in the film, as well.) I know others have fonder memories of this style of music, but to me it just sounds like people trying to be larger than life--which should be the domain of God alone. The cantor at my synagogue has the most glorious voice on earth, and probably heaven as well, but also a way of singing that is smaller than life--humble, full of awe, able to make quiet sounds that leave room for the rest of us to hear the still small voice. His hazzanut isn't about him, but us, one of the best gifts I've ever received.

Sunday, August 29, 2010

942. Trifecta

Guilt and worry--the signature characteristics of of American Judaism. No, not really, but they often seem to be, especially during the month of Elul. They don't have to, suggested the rabbi yesterday at services. This week's Torah portion, Ki Tavo, included a long and somewhat gruesome list of curses, followed by a bunch of blessings. The rabbi related it to the blessing and curse of hindsight. We feel regretful when we look back at what we haven't accomplished, but failure is part of the human condition--and we're engineered to learn from our mistakes. But our educational system, and our entire American culture, pretty much, make us feel that we're out of luck when we don't immediately "get it," whatever "it" is. Perhaps--a radical idea--we can think of hindsight as a blessing instead, a helpful and welcome tool to identify what we have't yet achieved, and are still able to. (Or not; in that case, a way to reach closure, and move on.) In context of the current, introspective month of Elul, he suggested we turn things around and try to be grateful instead--OK, I've fallen short of the mark, but look how much it's taught me!--rather than reacting to our shortcomings with that popular trifecta of guilt/worry/anger.

It's a brilliant insight, and seemed much more possible to achieve as I sat in services listening to the rabbi's kind and logical words of wisdom. Today, not so easy. But as I get ready to attend the funeral, in a few hours, of a sweet, lovely man (I wrote about him a few years ago), and lead a shiva minyan for a different grieving family tonight--and another for yet another family on Tuesday*--I am reminded to be grateful for the health of my loved ones, for being able to live in freedom on this gorgeous, sunny, not too hot day, and for the possibility of growth and change, whenever I'm ready for it.


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*I must admit that I didn't jump at the chance to volunteer, as I'm a little afraid of being around so much sadness so many days in a row. But all that death taxes the resources of any community, even a large one like ours, and also causes rabbis to run around like crazy providing support to very many grieving people. I can't imagine anything more exhausting; I want to do my part to help my rabbis find a little space to breathe before they have to support the rest of us during the holiday marathon.

Wednesday, August 25, 2010

941. Jewels of Elul blog tour: “The Art of Beginning... Again”

This post is part of Jewels of Elul, which celebrates the Jewish tradition to dedicate the 29 days of the month of Elul to growth and discovery in preparation for the coming high holy days. This year the program is benefiting Beit T'shuvah, a residential addiction treatment center in Los Angeles. You can subscribe on Jewels of Elul to receive inspirational reflections from public figures each day of the month. You don’t have to be on the blog tour to write a blog post on “The Art of Beginning... Again”. We invite everyone to post this month (August 11th - September 8th) with Jewels of Elul to grow and learn.

We hope you’ll share the program now with your friends and followers to spread the word about Jewels of Elul. If you’d like to, you can also folllow Jewels on Twitter or join the Facebook group.


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Two weeks ago at services, the rabbi spoke about Parashat Shoftim:

Deuteronomy 20:5 Then the officials shall address the troops, as follows: "Is there anyone who has built a new house but has not dedicated it? Let him go back to his home, lest he die in battle and another dedicate it. 6 Is there anyone who has planted a vineyard but has never harvested it? Let him go back to his home, lest he die in battle and another harvest it. ..."

This section is particularly appropriate for this time of year, she observed, because it's about our goal for Elul: finishing so that we're ready to begin. Yes, we have the freedom to start anything at any time–but can we truly renew, release bonds, until those loose threads are tied?

Well, it would be lovely if life had the good graces to work according to the Jewish calendar, with resolution achieved like clockwork. But what if I can't make peace with those I've wronged by the end of Elul, or Yom Kippur, or even by Hoshana Rabbah, the day when those gates really, finally, close? Am I out of luck until next year? I don't know—but I don't think so. I love that in Judaism there's always another chance. Year after year we find new light in the darkness on Hanukkah, learn how to be free on Pesah, grow up as ethical beings on Shavuot; starting over doesn't happen just once, even though Elul gets all the press. Remembering that every day is an opportunity to reboot takes some of the pressure off for me at this time of year. But not all of it.

I've been thinking about this a lot lately because Elul for me, this year, is mostly about my role in the process of someone else's re-beginning. As readers of this blog know (all 5 or 6 of you, thank you immensely), a few months ago, incredibly, after 11 years in the National Marrow Donor Program registry I matched with a stranger to be a bone marrow donor. It was scheduled for July, but she had a setback and it was postponed indefinitely. My speechless awe tumbled quickly into anger—how dare God have the chuztpah to offer hope, and then yank it away? In truth, I had no idea of the extent of her illness, or how much hope there ever really was. All I knew was that I might be cheated out of the gift of being able to help.

And after grumbling for a few days, I realized I was more upset about losing my opportunity to do a cool, once-in-lifetime mitzvah than about the recipient's grave situation. I hated this encounter with my own selfishness and impatience, which I tried to explain as a reaction to God's random screwing around with the timetable. I felt completely powerless; it drove me crazy. This was Elul, the time to fix. I wanted to DO something. My Elul for the past 6 years had been about action—rehearse, sing, feel like a wrung-out sponge, and then like a new person. The Elul of waiting around was my old life, been there, done that years ago in Row Z of a moribund synagogue in Queens.

But then I thought about the waiting of my recipient. How could she possibly bear it? Did she try to reimagine time, creating new holidays, new beginnings and endings, in place of the real ones she might never again experience? Unable to take action and grab onto life, to complete any task at all, was she able to glimpse the future through love, laughter, the light of the sun coming through the trees?

I hope so, because this unknown woman (I named her Bracha—all I know about her is that she needs blessings, and everyone deserves the dignity of a name), this Bracha, by the simple fact of her existence and surprise of our connection, has taught me not to stress out over Elul. My beginning for this year happened in March, when I first learned I was a match. Maybe something was resolved in order to create that beginning, or not. It doesn't matter; what counts is that it changed me. I started exercising, to make sure I was in good shape for the donation. I plunged back into the world of dating after a long hiatus; I figured those odds must be better than the ones I just beat of matching to a stranger. Bracha reminded me that life must be grabbed onto, over and over again, to renew even when messy, loose threads of unfinished business stand in the way.

And life may end up fitting neatly into the calendar this year, after all. I recently learned that Bracha is now stable, and the donation has been rescheduled for the end of Sept. For the day of Hoshanna Rabbah, in fact—when the gates symbolically close, and we really, finally, do begin again.

Wednesday, August 18, 2010

940. Random things falling off the wall

Elul sure did come in with a bang last week. But I haven't yet been successful with my plans to do the daily exercises in 60 Days, as I did last year. I'm trying, but have been temporarily defeated by an inability to concentrate (for good reasons). I haven't given up, since I know that Elul will not wait; I need to catch up. I got a reminder of this last night, in fact, just in case I happened to forget.

I was sitting at my desk, cranking on all my deadlines, when suddenly—the sky fell. Or so it seemed... a big, heavy piece of it whooshed past my right ear, knocked off my glasses, and landed at my feet. I was frozen for a few seconds, unable make sense of what happened. All I could think to do was get down on my hands and knees and reach around to find my glasses, since the world was now a big blur. I finally tracked them down on the other side of the room, completely bent out of shape.

Only then, crawling across the floor, did I begin to understand what happened. Over my desk, near the ceiling and about 7 feet up, is a big, ugly Con Ed meter camouflaged by an even bigger, heavier wooden box about 3 feet long by 1 foot deep. It's been wedged into the space between the door frame and the ceiling for a few decades, I'm guessing. The meter reader guys lift it up and then shove it back in place without fanfare each month in order to calculate the bill.

Last night, for the first time in its long and uneventful life, the box decided to fall off the wall and right on top of me. My glasses, thankfully, suffered the full force of velocity--had I been wearing my contact lenses instead, the broken and twisted parts might have been my teeth, skull, or eye.

I'm still shaken up, but fine physically—just a little bump on my right temple and scratch above my eye. (I'll know this afternoon if I need to say Kaddish for the glasses.) To say I feel lucky is the world's greatest understatement. But I also think that assault by a falling piece of wall is no different than any other trial, whether it be contracting an illness or losing a love. Or even much different than the good, random things—matching with a stranger to become a bone marrow donor, for example. There are no miracles or punishments; it's all life, one big soup of events that happen, or not. We can control only some of them but, to some degree, can control our reaction to all of them, and that's where I think Elul comes in. Once a year we join with our community to contemplate the spilled soup, and try to clean up the mess. And then we can start all over again with a clean table.

Sunday, August 15, 2010

939. Madness, definition of

Thought for the day, courtesy the fortune cookie I just got at Empire Szechuan:

"The universe without music would be madness."

Amen!

Thursday, August 12, 2010

938. Agenda

Interrupting the current ongoing story for another ongoing story. A few days ago, exactly one month since I heard from the bone marrow donation people, I emailed for an update. I steeled myself for bad news; if the recipient was sick in July, what were the odds that she'd be strong enough to withstand the procedure just one month later? I prepared to mourn the end of this glimpse into how small the universe really is, and the life of a woman whose name I don't know, but who has become a profound influence. (What would that mourning feel like? I know the pain of losing parents, and even of the death of part of my past--a hole of grief one blindly, painfully escapes over time, if lucky. How much does it hurt to lose something you never really had in the first place?)

The shock of our connection reawakened me to the great luck of my life, and reminded me to discard complacency, a recent trap, and live instead with equal measures of patience and urgency. Thanks to Bracha bat Sarah, I began to pursue some long-dormant goals. I'm eating better, exercising, honoring the good fortune of a healthy body, and feeling more happily alive as a result. And I don't want that to end--I don't want to stop feeling hopeful, as being blindsided by bad news can do. So over the past few weeks I've tried to protect myself, practicing for pain by imagining the worst and then ignoring it entirely. The real answer made me giddy:

"Well, you must have some kind of intuition going on, because I just received an email that the patient may be ready to proceed."

It was the day before Rosh Hodesh Elul--what better moment to begin a journey of change and renewal? Yes, I'm still willing to donate, I answered when they asked (as they must before every stage; I can back out at any time, no questions asked. But if I turn back too late in the process, the patient will die.) Yes, any day is good -- well, actually not. I'm kind of busy during the weeks of Rosh Hashanah and Yom Kippur, and don't want to run the risk of getting exhausted the week before, either.

They got back to me today with new dates at the end of September, right before Simhat Torah. I had a feeling all along that it would happen over Shavuot. You couldn't script it more perfectly--harvesting the stuff of life during the holiday of the harvest.

I still need more blood tests to confirm that I haven't caught anything nasty over the past two months. Various administrators must exchange paperwork. It's still not a sure thing; I don't believe that man plans and God laughs (well, maybe God does laugh at times--but at our excellent jokes, not at us), but God certainly has agendas about which we have no clue. So I'm prepared for anything. And if it really does happen--I will not only celebrate new Torah the next day, but also the renewal of life. And not just Bracha bat Sarah's, I hope and pray, but mine as well--the miracle of this connection will change me forever.

Monday, August 09, 2010

937. High Holy Days 5770, part 8

(Continued from here.)

The gargling worked, but not entirely. My throat went from feeling like a paving stone on the road to Hell to a mere white-hot coal dancing in the mouth of an active volcano. I continued to search online for sore throat remedies and found this, mirrored on approximately 4,760,000 different sites:

Garlic Honey

Basically: Crush lots of garlic. Add honey. Microwave. Eat. A miracle ensues; health is restored, or so claim thousands of people. Who knew?

So I whipped up a big, steaming bowl. Actually, it wasn't so steaming; I couldn't bring myself to heat it. It was pungent enough at room temperature to bring a large gorilla to tears, and I couldn't help but recall the time my old boyfriend's roommate decided to cook an Italian feast and put so much garlic in the lasagna that I almost passed out. (He rescued me just as I was about to drown in the soup.) Heavy spices and I do not always see eye to eye. I chose to refrigerate the concoction instead.

The bowl of honey and garlic sat marinating for the next three days. I figured it would be more effective after it matured for awhile and, besides, I was afraid to eat it. Very afraid. More and more powerfully aromatic clouds wafted out of the refrigerator each passing morning when I opened the door to get the orange juice until one day I began to consider hiring a SWAT team to kidnap the bowl and dump it at a nuclear testing site. By day four I abandoned any thoughts of actually spooning down the stuff, since its aroma suggested that it might make good rat poison.

By day five, one day before Yom Kippur, I realized my sore throat was gone. I think the garlic and honey was successful after all, even though I never ate it--its very presence intimidated my germs into submission.

(To be continued.)

Sunday, August 08, 2010

936. High Holy Days 5770, part 7

It's almost Elul, yikes. This means I will soon have to stop working 12 hours a day and begin to think about more important things. Meanwhile, just four weeks left to finish the story of High Holy Days 2009. Where was I? Oh yes, Mr. And Mrs. Loud and Louder. So Rosh Hashanah ended, and I returned to real life. Things were great for a day. But the day after that, not so good: I woke up with a sore throat. Not just your run-of-the-mill pain--I never do things halfway--but the kind that makes you want to rip your tonsils out of your head and pour a gallon of ice down the remaining cavity. I usually ply non-life-threatening illnesses with echinacea or Advil and hope for the best, but this was an urgent situation--I didn't have time to wait for nature to take its course. I refused to accept a replay of 2005.

"Well, it could get better or worse in the next few days," opined the doctor unhelpfully after peering down my throat for a good long ten seconds. This was slightly better news than what a different doctor had told me a few years earlier, but still not so good. "Rest, drink plenty of fluids, and if you can't speak the day before you have to sing, call me. I have a few opera singers as patients. Steroid injection," she added.

I did not want a large needle anywhere near my vocal cords, so decided to find a miracle cure on my own. After scouring Google, I learned that established medical professionals and quacks alike seemed to have great faith in the remedy of gargling with warm salt water every hour on the hour. Even though it made me gag, I set my alarm clock and did so. I drank gallons of liquids and forced myself to sleep 10 hours a night over three days, during which I neither left the house nor spoke on the phone. I was determined to coddle this cold to death--kill it with kindness rather than a predictable OTC poison.

(To be continued.)

Monday, July 26, 2010

935. Flustered

So Tisha be-Av went well, in additon to the aforementioned study. My chanting was a bit... flustered. Chapter 4 of Eikha began on the usual awkwardly high note, which I must pull accurately out of the air to insure that I don't end up somewhere deep down below where I can't reach (taking into account my tendency to go flat when chanting while sitting cross-legged on the floor). I *just* made it. My long morning Torah reading was uneventful, except for a moment during the second aliyah when I lost the trope (that I knew like the back of my hand--it happens). The rabbi, generally the best gabbai in the history of all gabbais, sang the correction clearly. But he uses a different trope than I do. Usually I can translate, but had never heard that melody before; I chose to stumble on a fairly uncommon section of the tune. He sang it again, quietly and calmly. At that point I decided to just leap off the cliff and move on to the next phrase, hoping my memory would return--which it did.

At the end of the aliyah the rabbi turned to me and whispered, "Sorry--I forgot that your trope was different!" Hello, now you know how I've felt for the past eight years. (It's not all that different, but there are two major schools of trope at my synagogue, stemming from the two people who've taught it over the years. He is one; I learned from the other.)

My third flustered incident was at Minha later that evening. I knew there were three aliyot; as the haftarah reader, the last one would be given to me. The gabbai, none other than F., came over to confirm: "Shishi [sixth aliyah]?" he whispered. Hmm, I thought, that doesn't sound right, but he had already darted away. Well, nothing is ever set in stone at my congregation; we often flout tradition, and things tend to change all the time. So at the third aliyah I just continued to sit and enjoy the scenery. Suddenly I was aware of a big silence, and everyone looking at me. Everyone. Stares really can have the force of steel beams. I noticed that both F. and the rabbi were gesturing not quite imperceptibly for me to come to the bimah. Oh, I realized... he said "shLishi" [third aliyah]. Duh. I ran up as fast as I could and apologized, because this is something one just does not do; services tend to run like clockwork. No one said a word, but I was sure they must have thought I was biggest space cadet ever. I didn't even have fasting-induced lightheadedness to use as an excuse.

(Afterwards I realized that I must not be the first person in the history of Torah chanting to mis-hear those two words. But I'm probably the first to blog about it, so there's no recorded history to assuage my feelings of guilt. Which I no longer have, thanks to a good night's sleep.)

Just a few more weeks until Elul and the start of the next marathon. Meanwhile, sitting here figuring out how to type on my brand-new and truly guilt-inducing iPad, which I sort of need for work but not really, just couldn't fight temptation any longer, listening to Pharoah's Daughter and getting in the mood for all the music to come.

Sunday, July 25, 2010

934. Does God pray?

Tisha be-Av Minha ended, and we were all on our way out the door--and then the rabbi said, "Anyone want to stick around for awhile and study?" Still two hours before the fast ended--better to spend it in the synagogue than at home, hungry and tempted. I wasn't among the fasters this year, but decided to stay just the same.

Turns out I was very familiar with the text he chose, a line in the haftarah I had just chanted. (For the eighth Tisha be-Av minha in a row! It's the first one I ever learned. Time flies.) It's from the end of the usual fast day afternoon haftarah (Isaiah 55:6-56:8):

56:7: Then will I bring them to My holy mountain and I will make them joyful in the house where men pray to me, their burnt offerings and their sacrifices will be favorably accepted upon My altar for My house shall be acclaimed as a house of prayer for all people.

Vahavi'otim el-har kodeshi vesimachtim beveyt tfilati oloteyhem vezivcheyhem leratson al-mizbechi ki veyti beyt-tfilah yikare lechol-ha'amim.

The words he focused on were "beveit tfilati," here translated as "the house where men pray to me"--but "tfilati," "my prayer," could also be read as "the praying that is mine"--the praying I do. Could this be, wondered commentators--does God pray? What would God pray about? Why? The rabbi read a passage from the Talmud about God apparently learning how to pray from a simple shopkeeper. Did we think it was possible, he asked?

Big silence in the room at first. On the one hand, we strive to envision God as less literal and more spiritual than the bearded old guy in the sky. But we also want to be able to pray to a God who's like a parent or friend, to whom we can cry and expect a response. How to reconcile the two?

For me (I said when I finally got the nerve to raise my hand) the answer is self-evident. If we can pray, then God must be able to, as well--for how could we do something that God can't? If God chooses to pray (that, I have no idea), then I think God prays that we humans will choose to pray. I believe God yearns for the partnership just as we do. I don't really know what that means--I don't know what "God" means--but I believe it just the same, and feel it in my heart and bones.