Tuesday, July 30, 2013

I can tell you about my breath

I can tell you about my breath.

When I awake tonight, only two hours after first falling asleep, my body is tight, tense in every muscle. As I float to the surface I become aware of my mind. A few more minutes pass and I become aware of my body. My thoughts drift here and there and I recognize I am wandering too far into the future. I bring myself back to right now.

In. Ouuuut. Innnnn. Ouuuut. I force myself to breathe deeply. It is a struggle, but I know that it is the only thing.

Almost as soon as I begin to focus on right now and that breath, my mind is moving ahead again. I pull it back but it wants desperately, and it despises at the same time, to think about the hospital waiting room, the ticking of the clock, the hours between the rolling of the gurney into the OR and the arrival of the doctor to tell us he’s out of surgery.

I force my lungs to open wide, pulling in air, through my nostrils, slowly slowly. My belly opens up, air filling it to capacity. I can feel my shoulders, tight and strained. I try to let the air into them as well. Relax. Relax.

As soon as I breathe in, the thoughts of the hospital dissipate. But almost as soon as the exhale is done, in those last seconds of exhale, the thoughts come back, like the tide, like a wave, like a freight train.

Ben in surgery. Ben in pain. The waiting room. His bedside. Tubes. The color of his skin. The feel of the vinyl seats in the hospital room. The sound of the curtain being pulled across his bedside. The sound of other children moaning from their beds nearby.

Again, I tell myself. Breathe again. Innnn. Ouuuut.

I can tell you this is not easy. I have been here before, and yet, I truly do not remember feeling exactly like this. Perhaps it’s like the amnesia you have of pain. Perhaps that explains why this feels foreign and yet familiar.

Seventeen days before surgery and I cannot sleep. It makes perfect sense to me. But how, I ask my brain, will I survive seventeen nights like this? How will I function for those seventeen days?

I come back to my body. My skin is prickly. My nerves are on high alert. I bring myself back to my breath. Breathe innnnnn.

Breathe ouuuuuut.

I feel pain in my groin. I feel pain in my feet. My eyes burn, though they are closed, tight shut. They are dry.

I bring myself back to now. Breathe. Innnnnnn.

Out. Ouuuuuut.

Mark snores peacefully next to me. I have taken to sleeping with earplugs and an eye mask. It was working until about a week ago. My sleep improving after years of fitful, fruitless, interrupted nights.

Tonight, though, I can feel the little orange sponges in my ear canals, I can hear Mark’s snores through them and feel his dispassion. Well, I imagine his dispassion. I know he’d try to help, if I’d let him.

Again I breathe. I am forcing myself to breathe. Thank god my body knows to breathe, however shallowly, without my conscious effort, because if it didn’t I wouldn’t make it. That’s for sure. I wouldn’t make it. My mind is clearly not on survival, my breath is so shallow in the in-between moments.

And I should tell you, I’m not panicking, but I’m not not panicking, if you know what I mean. This is just where I am. It is unpleasant. It is not helpful. I can talk myself out of it, but again that’s just my brain distracting me from—



What will I do in those waiting hours? Knit, crossword puzzles, check Facebook three million times, read a book? My attention span is getting so short these days I can barely get through a paragraph. Who will I talk to? Who will, what will distract me from the endless, murderous waiting?

I drag my mind back. Now. Right now. There is no point in this line of thought. There is only right now.

Breathe dammit!

Innnnn. Ouuuut.

The air flows in, filling up my belly again. I hold it, allowing myself to relax, focused on that one action, and then I release.

If I can only stay here, return here, to this breath, I will get through somehow. It is the key, held ever so vulnerably in my core, to survival.

Sunday, July 28, 2013

At the edge of the lake

I awake, the tension in my back becomes noticeable immediately. I breathe in deeply, filling my belly with air like a vase filling with water. I let it out slowly and then do it again. The tension begins to ease.

We are entering the final phase before Ben’s final surgery and I am feeling it. I am feeling like I’m about to step off a dock into a lake, the dark glossy surface hiding the treacherous depths below. What is lurking there? I’m not sure.

This has happened before. It’s all happened before. I’m not pushing the feelings away. It is where I am, it is what it is. But feeling all this, the fear and anxiety, the knowing of what’s coming and the knowing that there will also be surprises and things I’ve forgotten to prepare myself for, things I couldn’t possibly have prepared myself for, well, feeling all that is heavy.

Ben is feeling it, too. He was gone last week camping with his good buddies, playing Live Action Role Play (LARP). What better activity to engage in three weeks before major surgery? Be a mage or a monster. Collect magical powers. Slay a few evil dragons. (I’m sure I’ve gotten the details all wrong, but you get the picture.) Sounds like good therapy to me. He came home exhausted, happy, and dirty. He took a shower, rested and dove right into a very cranky state of being. Headaches, back aches, general bad mood. Who could blame him?

Mark is feeling it, too, though he rarely expresses it to me. Strong and silent. Removed.  

That’s hard for me, if only because I need him and I need to talk to him and feel connected. I process through talk, he processes through silence. I can feel us getting farther and farther apart…floating on the lake…I can’t reach him and that treacherous stuff under the surface? How will he save me from it if he’s too far away for me to reach?

We usually are very good partners, and we’ve weathered hard times over and over, but we don’t do Hospital well together. Over the years, Mark’s been there at the battlefront for all but one surgery. I’ve been there for half of them (seven, if you’re counting). When Ben was in Children’s Hospital having his brain surgeries we were both there, in our little shells, trying to just survive. I remember one day, taking a break at a local café while one of the grandmas stayed with Ben in the ICU. We were nearing the end of our time there, we both knew that. Ben’s wound was finally responding to treatment and healing and he would be released soon. We sat quietly at the window of the café, drinking our coffees, nibbling on lemon bars and brownies. I asked Mark to talk to me about what life would be like when we finally got home, what we would do, how we would manage the transition, and he just wouldn’t do it. Couldn’t do it.

I feel the need to plan and project into the future. I want to be prepared for it. What will happen? How will I deal with it? What if? What if? Worrying…some might call it that. A mother’s prerogative.

I did it when Harry was inutero. I was so anxious that something would go wrong and we’d be that 1%...Mark’s the math guy… “There’s hardly any chance that will happen!” he told me and my response was: “Yes, but someone is that 1%...it could be us!” Cleft palatte, cleft lip, death in childbirth, stillborn.  It happens. I know people it’s happened to. “How will we deal with it?” I remember asking him. “Will you talk with me about how we’ll deal with it?”

And “No. I can’t do that,” was his answer.

We’re in that place again. He can’t go there with me. I brought it up with him the other night while we soaked in the dark in our hot tub. “I don’t want Ben to have the surgery,” I said. And from him I had silence. Was he listening? Was he processing? Hard to tell in the dark. Even though I know better, I got hurt and grumpy. I hate that. I know better. I know that Mark is processing, too, feeling it too. But I’m still feeling alone and isolated in the moment.

I am tied in knots, worrying about this surgery. Even though I implicitly trust his surgeon, I am worrying. What am I worrying about? That Ben will die in surgery? No, not really, though realistically, it’s possible. That he’ll end up paralyzed? Again, a possibility, but even I can’t go there this time.

No, I am struggling with the fact that 13 of his vertebrae will turn into one long bone in his back, an irreversible change that will affect him for the rest of his life. What if he can’t stand how it feels? What if he doesn’t want to be touched or held or hugged anymore? What if he can’t ski or ride a bike or be active the way he wants to be? There’s no backsies on this one, people.

This is regardless of what I’ve already heard from many folks. That it’s the right choice. (Hell, it’s hardly a choice. More like an inevitability.) That he won’t be hindered by it…he’ll be able to ski and be active, indeed he’ll need to be active to feel his best. And that’s great because at his core he’s an active guy, and he’s lost that along this very hard way.

After all these years of going into and out of surgeries, it will most likely be a huge relief to be done with all that. But I can’t imagine what he’ll feel like to have so much metal in his body.

I can’t imagine how he’ll feel to have lost mobility in his core.

I am afraid to watch him in pain in the hospital, recovering from an 18” incision, his vertebrae being removed, ground up, packed back in with rods and screws. I’m terrified about seeing him in pain. I want to run away to another continent when I think about seeing him that pain. Oh my god. How will I deal with that?

I’m having trouble with it all.

Last night we had our last night as a family, all together, for the next five weeks. Toby’s off to summer camp today and when the camp buses return him to us in two and a half weeks, Ben, Mark and I will pick him, go grab some dinner and then drop Ben and me off at the airport to head down to LA for the surgery. (We planned it that way. Toby wanted at least one hour with us before we were off.) Mark will join us the next day. And the day after that is Ben’s surgery day. Ben and I won’t come home for another two plus weeks.

We wanted to have a blissful family time…dinner, game night…laughing…happiness…but, predictably really, it devolved into bickering between the brothers. Toby, hyped up on nerves about leaving; Ben, cranky with transitioning home after his camping adventure; Harry, resistant and uncomfortable about change of any sort…Everyone got on everyone’s nerves. In the end, even though the two older brothers went off to watch a movie together leaving Mark and me to play some games with Toby alone, it was okay. The tension was somewhat relieved. And before bed the older brothers came out to hug their baby brother good bye and wish him well at camp.

And now, as I look at it, I see where I went wrong. I wanted us to be blissful and happy, as if we weren’t all stepping off the dock into those treacherous waters together. Telling everyone, “It’s our last night together as a family for five weeks” was the death knell to a lighthearted family night. What was I thinking?

I need to process. I need to be in it to get out of it. And all I did was stir it up for them. Yet, if I hadn’t? If I hadn’t alerted them to the fact…Pay attention people! This is the last night we have together for a while! Take note! If I hadn’t said that, I’d be blamed later for not having warned them, alerted them, called attention to it all.


The thing is I haven’t been just preparing myself for what’s coming. I’m busy preparing everyone in the family. It’s my job. My thankless job. And yet, not thankless. I know that though they push back, they can see I hold it for them and I’m there for them when it’s time for a hug or reassurance or healing.

And so, I will continue to worry, and predict, and consider what is hiding under the surface. And lure their worries out of them too, consciously or unconsciously, it’s what I’ll do.

Sunday, July 14, 2013

road trip

I awoke this morning dreaming I was heading out on a spontaneous road trip, all by myself. The destination was not clear, but I was not concerned. It was about the journey, after all. I hadn't even packed a suitcase yet, was thinking about the route, and how soon I could hit the road.

When my mind became more aware, I had a strong urge to write it down and immediately, I connected it to a journey I've been on since last fall.

In October I was turning 50 and I was preparing the music and sermon for my synagogue's biannual women's retreat. Hitting menopause I had been feeling like my voice was changing and I indulged in some voice lessons for the first time in my life. I dug deep into the music, I dug deep into the Torah. My enjoyment of the process started to blossom. I was singing Jewish music night and day. I was reading and thinking about Jewish texts, I was peeling back layers, I was writing and questioning and discussing something intellectual and spiritual. I suddenly became aware of a new desire in my heart.

Not coincidentally, the theme of our women's retreat was "Liminal Moments," threshold moments, doorways of time and space, emotion and experience. I was turning this over and over in my mind, reading about transitions, writing about those doorways in my life which I'd already walked through.

In addition to all that, at the same time I was also taking an online course called Cultivating Courage, taught by the amazing and wonderful Andrea Scher. 30 days of Courage. "One conscious, brave choice every day -- for 30 days." 30 days to put on my Wonder Woman cape and flex my courage. I took it to heart. I was so brave that month.

And by the time the women's retreat came, and went, I had a whole new plan for myself. I wanted to be a Jewish spiritual music leader. I was headed down a new road with a very new sense of myself, what I could do, and who I could become.

I've been a Jewish songleader ever since I first owned a guitar 33 years ago. I don't even remember why they hired me, but when I graduated from high school I was asked to be the music teacher at the secular Jewish school, Sholem Educational Institute, at which I had been first a student and then a teacher's aid up till that point. The guitar was a present from my parents for my high school graduation. I began taking lessons that summer. By September, I knew about 5 chords and was standing in front of groups of kids and parents leading them in song, as I recall a fairly even mix of Yiddish folk songs, Negro spirituals and Bob Dylan. "The Garden Song" by Arlo Guthrie was also one of our favorites.

Throughout the next 33 years my guitar was often in my hands as I led singing at that Jewish kindershul and another, in my elementary school classrooms as I ventured out into the world as a grade school teacher, in all three of my children's preschools, at yearly family Passover Seders, on family camping trips, and at our synagogue's religious school. When, a few years ago, I took a break from teaching music at Hebrew school, my guitar sat quietly in a corner of the living room. I didn't take it out much to play. It was the first time in years that I'd not had calluses on my fingertips.

But last fall, on the brink of my milestone birthday, the potential beginning of a new period in my life, my guitar came out and I opened my mouth, and my heart, and something really surprising emerged: a deep inner spiritual expression of myself.

What I started to appreciate was how I felt differently when I sang Jewish music, Hebrew lyrics, really Hebrew poetry and prayers as opposed to folk songs, pop songs, other music. Not that that music can't lift your spirit or touch your soul. Absolutely, it can. But there was definitely something different in me and coming from me when the music was Jewish.

At the retreat, I was seen and also saw myself as someone who could do this. Could create a soulful experience for others. With my music and my words I reached into hearts and souls. Women were embracing me, were crying, were smiling and thanking me for helping them to feel deeply in those moments. The pleasure I got from that was immense. It wasn't a surprise, I had been leading music for over three decades, but the spiritual part...that was new.

I wasn't even sure how to couch this new-found belief. It felt like a spark, a knowing. It was deep inside me and didn't fit easily into the words we have for it: God, soul, religious. Meh. Those words just don't express what I was experiencing.

I have always had a strong Jewish identity. It went beyond beliefs. It's about a history. A common thread. A tribe. I am very tribal! But the God part was not comfortable or even familiar to me. I didn't just accept the idea of God without a trial. That kindershul I grew up in was secular. It was Judaism without God. Jewish history, culture, music, food. It was good for my realist and rational thinking parents, and at the time it was good for me. But the miracles were all explained away. The mysticism was not there.

Through the years I've questioned and questioned. I've felt uncomfortable at services. All that praising of God! I even felt uncomfortable singing and teaching religious Jewish music when I first became the Hebrew school music teacher nine years ago at our synagogue. It was something I did, but it wasn't a perfect fit.

And then suddenly, last fall, turning 50, feeling brave, and taking on the job of leading services at the retreat, I noticed the feeling was different. There was less struggle and more flow, less questioning and more knowing. Suddenly there was a sense of God within me, unfamiliar and yet familiar. (And after 50 years of being unsure, it is not easy to change one's ways. Even now I hesitate to put it out there lest someone think "She believes in God!")
There's definitely a place or a need and a want in my heart for holy thinking, sacred space, the unknown and unknowable. 
And yet I can't deny that I now feel there's a place for those miracles and for the kind of thinking that accepts the possibility of miracles. There's definitely a place or a need and a want in my heart for holy thinking, sacred space, the unknown and unknowable.

So I stepped onto that path. After the women's retreat there was a sense that I was going to do this, to lead people spiritually with my guitar, my voice, my presence. Oddly, there was a hole that had opened up at the same time at our synagogue when the week before the retreat they had let the new cantor go, suddenly, only 3 months into his contract. Many people looked to me and asked, "Can you do this? Do you want to do this?" and my answer was "Yes!" But that was not to be. There is, apparently, a protocol, there is a process, and there are a lot of rules at our synagogue...in synagogues in general? I am naive, it was not as simple and clear as I thought...We have a need, I have a voice and a desire, an ability.

Leading music at Kindling the Spirit.
I'd like to say they, the synagogue leadership, opened their arms to me, delighted that my personal epiphany was timed so right for the sudden musical vacancy on the bimah (stage). But they didn't. They actually seemed fairly threatened by my confidence, my passion to sing and be a spiritual leader, and unfortunately, they were pretty negative. (Why? I don't actually know. Only conjecture.) Over the months they've come around a bit, and I've had the opportunity to lead several services there.

But something better came out of the retreat. Two friends of mine, Barbara Hirschfeld and Margo Miller, one a Hebrew teacher and Torah and Jewish prayer scholar and one a meditation teacher, came to me and asked me to collaborate with them. We sat down a few months later to create a program called "Kindling the Spirit: Exploring Judaism through Meaning, Music and Meditation." Margo takes a phrase or a word from Jewish texts, prayers, the Torah and then unpacks the wisdom and meaning in it. Then I pull in music, some new, some old, some I even have written (yes, I've even started to write Jewish music!) for the occasion that helps us to connect the text to a musical expression. And Barbara leads us in meditation focused on that theme, that new understanding. It's powerful and beautiful stuff. The collaborating is incredible. We teach in Barbara's gorgeous meditation center, Open Sky Retreat Space. We are a wonderful trio together. And we have a following now, people, not just Jewish people either, who are seeking more meaning and more meaningfulness in their connection to Jewish teachings. That has been an incredible experience, a blossoming of our passions together, and a path I never considered was there, was viable, was possible. We have taught several workshops already and have more planned for the coming new year. And we were recently invited to bring our workshop to our synagogue...and share our wisdom there. Huh!

We brought Kindling the Spirit to our synagogue this month.
Barbara led me to another connection..."You should talk to my friend Lorenzo..." and so I have also started to collaborate with a wonderful guitarist and composer, Lorenzo Valensi, who leads music at another local congregation, Ner Shalom. I've been embraced there with open arms. It's a really positive and moving experience to sing with them.

Singing my own music at Hava Nashira's open mic night.
In May I attended Hava Nashira, the Jewish songleaders' conference in Wisconsin. And in June I attended a 4 day intensive program with Joey Weisenberg, a terrifically talented and inspiring musician. I feel like I'm a pot under a spigot, filling to the brim. I'm taking it all in...processing, learning, sharing, bursting with spirit and passion for this music and learning.

There have been periods when I felt that I needed some concrete idea about where I was headed. I think we're accustomed to that type of thinking. "Oh, you can do ________, then you must be a __________." I lead Jewish spiritual music, then I must be a cantor. That type of thinking made me feel quite insecure. I mean, how does one do that when one is settled and not planning on moving, and there's only one cantorial position in the immediate vicinity...and they're not offering it to you? And also, is that the only way to lead Jewish spiritual music? From a bimah? On Friday nights or Saturday mornings?

Well, no. Clearly, being a cantor is one thing that I could be. But it's not the only thing. Once I released myself from that type of thinking I relaxed.

Two weeks ago I brought my guitar to my aunt's deathbed and sang to her, and family and friends who were gathered there. She was in hospice care, failing, practically unresponsive. And then we sang. We sang for over an hour and she opened her eyes. She listened and was present, in some way, for that music. When I was leaving I went to her, kissed her good bye and said "I'm leaving." "Where are you going?" she mouthed to me, the first sentence she'd uttered in days. I came back the next day to sing again.

The path, this road trip...where is it leading? There have been periods where I've thought I needed to know, but I don't feel that right now. I am creating my own opportunities to share my spirit. And as in my dream this morning, I guess I just need to get out on the road. The path will lead me where I need to go.

Friday, July 5, 2013

This is my boy

Ben 7.4.13

This is my boy.

This is my boy one week after surgery.

This is my boy one week after surgery, relaxed, laughing, beautiful as ever.

Ben got through Surgery #14 with flying colors. He opted to get his anesthesia with an IV rather than gas and had a much easier time snapping out of it post-op (his last few experiences with anesthesia were wrought with intense nausea in the days of recovery). Within a couple hours of returning to his hospital room, I was talking to him on the phone and he was saying things like, "I'm feeling AWESOME."

Now, having gone through surgery myself in the not so distant past, I can tell you that the word "awesome" in reference to how I was feeling probably wouldn't have occurred to me in, well, a month or maybe a year of said surgery.

But, my boy is different.

Clearly, he is accustomed to this crazy life he is living. Difficult though it is, he is familiar with the rollercoaster of feelings, both emotional and physical. With Mark right there by his side, and me on the other end of his phone, he feels protected. We are there to catch him, Mark physically, and me, emotionally. We are in almost constant contact.

He was highly motivated, as usual, to get himself up and out of the hospital as fast as possible. And did so, being discharged the next morning before lunch! By Sunday, and their flight back to Santa Rosa, he was off pain meds for most of the day and feeling great.

Before his surgery, Ben asked Dr. Cho if he could keep the rod that would be removed from his back. Dr. Cho said he'd see what he could do. It now hangs on his wall in a vacuum-sealed bag. It's his purple heart. Or his totem.

Dr. Cho told Ben that his spine is quite stiff and that means he's not sure how much correction he'll be able to attain in the upcoming fusion surgery. I haven't spoken with him, but I guess this is due to a combination of variables: his spinal vertebrae, the side-to-side curve, the forward curve, the rotation of his ribs, and the stiffness of his spinal cord. Ben took this as incentive to really work with his physical therapist on movement and flexibility there...as much as he is able...in the weeks ahead before the Big One. He will begin in just a few days.

This second to last surgery was almost more of an emotional hurdle than a physical one. Well, easy for me to say, I know. But the fact is that what lies before us is a huge surgery in comparison. Much longer, MUCH more intense from a surgical standpoint, much longer recovery...more pain.

Regardless, my boy is in such a positive place. He is at ease both in mind and body. And heart. I am the happy recipient of frequent spontaneous hugs, hand holding, and smiles. Such lovely energy. There is peace and wisdom and grace in it.

On Monday, the day after he returned from LA, I began a photography project for an online class I'm taking, In Plain Sight with Catherine Just. He agreed, before he left for LA, to be my subject daily for a month. And it was intentional for me...to choose this month between surgeries. I want to be very present with him during this time. And I want it to be a record.

The photo above is #4, the ones below are from the first three days. I have done this project once before, with Mark as my model, and it was an incredible experience. Already, in four days I have found it to be an avenue to express our connection more deeply and, in fact, to deepen our connection through the process of photographing him. It's not just me taking a picture of him. He is part of the process fully. He appreciates it, he shows up for it. For me it's a creative act, it's an act of love, it's an act of devotion.

Ben 7.1.13

Ben 7.2.13

Ben 7.3.13