The video I’m about to post is dedicated to a young life we lost last week. He always said yes to music, even on the days where he couldn’t pick up a shaker, when the most he could give us was a tiny smile. He was 3 years old.
I so loved singing to you, sweet one. Keep close to your mother, and rest your strong spirit.
”It’s such an enormous thing, to walk and to listen.”
I stood in the doorway and asked him how he was doing. He said, “I think a part of me just died.” How is it that teenagers are so dramatic and so honest at the same time? “Why?” I asked. It could have been anything. Whatever it was that brought him back to the hospital after being at home only a month. Some new diagnosis, prognosis. It was all the heavier from someone usually so bright and joking, all the heavier when followed by his wheezing inhale.
He told me about a painful clot in his arm from the IV, and that the doctor had advised him against playing his guitar. His guitar – a third limb, a little portal he gets sucked through and forgets to come out of for several minutes mid-conversation, mid-sentence, into the only other place to go.
I nodded. “Let’s find you something you can play. Have you ever tried the keyboard?” I saw the spark come back. He told he he wanted to learn more, and I went to go get one from our storage space.
My senior year of high school, my body was at odds with playing music. Between the misdiagnosis, failed treatment, surgery, and physical therapy for torn cartilage in my wrist, I couldn’t play guitar or piano for about 9 months. Attached to the injury was a warning – that my joints and ligaments were loose and prone to tearing, some genetic condition I forget the name of. A question with no answer, no cure. Play until it hurts, and then don’t play anymore. Even after the scar tissue healed, I would have to be careful, always aware of this possibility. Thank god I didn’t want to be a gymnast; they told me that with that amount of stress on the wrists, I would have been finished before I could even begin.
As I was going to get the keyboard, I wondered if and how I should offer this experience to him. Conceal the deep depression that had eventually sunk in, yes, but let him know that the moments that saved me were still in music, in learning how to make it in different ways. (The open mic where I had the whole room singing a song I wrote, writing songs with my best friend at the piano.) That there are infinite ways our bodies can release the music within us. That you don’t have to give up on yourself. Everything I wish I could have told myself then.
I still don’t know how to talk about that year. I have been learning that there are things that do not need to be talked about; that they are present with us in other ways. This morning reminded me that I am living the lessons of that year. Not one part of me gave up hope for him, even as I realized how difficult it was to hear the door closing on your one place of unchanging beauty and certainty and joy. That darkness taught me what to say to him, made me ask him where else he would like to grow. As if to say, “the part of you that died – it isn’t dead. It is sleeping and waiting for the winter to pass. Keep it warm while it waits. Keep moving.”
When I got back, his nurse had told him he can play. I breathed in relief, and out gratitude for the lesson.
for people who genuinely love what they do – who open a restaurant to make magic instead of money, who know the names/interests/moods/diagnoses of kids that pass through the hospital every week, who step up to each day without complaining about its challenges and with respect for every piece of their work.
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for spaces and people, and spaces in people, that are dedicated to connection. People who help you lift speakers on top of 4-foot barrels to get the best sound, who tell you about the artist they loved in college who died too young, who grin and clap when you have to start a song over, who thank you for singing your heart out.
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for the chances I’ve taken and the mistakes that followed. For the spring where I found music gigs on craigslist and went to them alone, figured out how to do my own sound, unplugged my guitar too soon and made the room wince, forgot my cds, forgot my mics, forgot my set list, for the places it opened in me that were filled with humility and the ability to talk to other humans who connected to those moments of mortification.
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for being able to see all of these tiny steps as wonderful. To surrender all of the worry surrounding the details of who will come to the gigs, what songs I will play, and just be my very truest self without fear, doing the thing I love best.
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(for tonight.)
It seems to me that the only way I want to live is in faith. Faith outside of all religious contexts, in the most basic sense of the word, simply trusting that all of these small, pointless things we do are in fact building something larger. Every artist knows this – spending the hours creating something, bringing sounds or images into life, putting so much energy into something that may not last a day, that no one else may ever experience. It is an investment in the potential for a more loving, connected world.
I am lucky that my life revolves around these small acts of faith, although it is so incongruous with the majority of this culture that I slip into someone else’s eyes sometimes, and look at my days with incredulity. What is it I really do in the hospital? If I’m not a music therapist, if I can’t quantify the work I do with patients, how do I know anything I do is helping these kids? And as for my own personal art, why am I recording out of my bedroom and not chasing a record deal? Why am I writing what I feel, and not the formulaic sounds and words that I know will work?
Last week in the hospital, I encouraged a teenage patient to try writing songs – that it would be silly at first, but it turns into a lovely way of expressing oneself. A while later, she asked if I wrote songs, if I would play one. I played her Snakeskin – a song I wrote in high school about turning into who we are through constant change and renewal; a song that, appropriately, has always felt true whenever I come back to it. It took me a few days to even appreciate the beauty of that moment, when my lost 17-year-old self could reach out and touch another lost 17-year-old girl, because I was so terrified of having done something wrong. I knew how serious conflicts of interest can be, how careful I have to be not to promote my music at work. I took care with how I answered her questions about how to listen to the song again, directing her to sites where she could listen and not buy. I made sure to connect it back to her, telling her I wrote the song in high school, before I was even singing for people. I still worried for the rest of the week. Coming back to it now, these systems just seem so stupid. I write music to heal myself, and I want to take it to others, and even though I know my day job is not the place for that, it just seems unfortunate we have to be so cautious when we have so much to offer each other.
I don’t know if that song changed her day, made her think differently. Or if either of those things would be positive. (I still worry that she might have taken something away from it that was damaging in some way, just as anyone might.) I don’t know how much these Taylor Swift and Justin Bieber songs stay with kids, if singing and playing a drum really makes anything better for them. But I feel their joy in these moments, and I feel sparks in my chest sharing it with them, and I believe these moments are making something bigger, just as the pages of written and rewritten verses, the nights taken to record and re-record a single voice part, all of this is wondrous in its own right and vital to this life I am building. My faith, my investment in people’s ability to fully love is manifesting in my unquantifiable, unproductive hours doing what I do. I hope to someday be completely unapologetic for this. I am taking small steps.
I think I’m gonna start calling these Pajama Jams. Pajamajams. Yes.
What a heavy week. This morning I kept leaving my desk at work to go cry in the bathroom. All the precious tiny lives. All the kids I see hanging on to life at the hospital, all of the people there trying to keep them with us, all the weeks and months and years, and everything undone in a matter of seconds. There are bigger things to talk about, but there must always be a moment for us to feel.
Yes, conversations about gun control and mental illness. Yes, closer scrutiny of who is profiting from this violence-enforcing culture of paranoia. But my thoughts go towards the family that the shooter came from, his mother the intended target buried in the school full of bodies that just stood in his way. There is something bigger. Lack of a gun would not have prevented some sort of tragedy, although it might have saved some lives. But maybe not (http://www.rawstory.com/rs/2012/12/14/man-stabs-22-children-at-china-primary-school/). You don’t need a gun to turn your wounds upon the world. People will find weapons and ways to turn their pain inside out. Firearms are among the more extreme examples, but regardless of mental illness, we cause destruction every day when we neglect our own souls, when we cannot extend help and meet people where they are. Turn inward. Make peace. Then turn outward.
I am trying to build a relationship with sleep. It has been long enough, the two of us wanting to reach out but avoiding each other anyway. Maybe it is just clinging to the nostalgia of being tucked in, but as I lie in the dark with the lights off and eyes closed, I have started to routinely put parts of myself to bed. I feel like a house stuffed with raucous children tumbling around the living room, their voices rough and loud. One by one I lead them upstairs and tuck them in.
Brain is always the first one. He is that age that dissolves my patience, somewhere between 6 to 8, particularly in boys, but I try to be gentle anyway. I take him by the hand and lead him upstairs, make sure his teeth are brushed, and sit beside his bed. I tell him all the wonderful things he did that day, all the little problems he figured out and the fascinating trips we went on together. We learned a lot today, I say, and now it’s time to rest up so we can do even more tomorrow. He tries to keep talking – he could tell me endless stories about the most mundane things, stories that have no beginning and no end yet connect to other things in infinite spiderwebbing. I cut through them, say yes, yes you told me that before. Now let’s be quiet in the dark for a while. When he has been quiet for a little while, I silently get up and leave.
Fear is a furrowed little owl of a girl, with eyes that are always round and distrustful. She is like a baby tree, barely a few years old yet already ancient. She just stares at me when I tell her it’s time for bed. I don’t talk for long, for I don’t know how many of my words she understands – I pick her up and carry her up the stairs, her twig arms curled around my neck. This she understands. Her breath is shallow cups of warm water splashing my neck, and when I first lower her to the bed, her arms fuse around me. I assure her I am not going anywhere, that she is safe in this room, and gently disentangle myself. I thank her for everything she has done to try to protect me, for all the hard work she does. I try to remind her she does not have to try so hard. This makes her tremble and cry and I stroke her hair, hearing Brain begin to fret in the next room. His questions bounce down the hall and I kiss Fear’s forehead, tell her I will be right back, and I go to try and soothe Brain and his endless puzzlings. When I come back, Fear’s eyes shimmer at me out of the darkness, and I rub her back until she falls asleep, the stitches in her forehead loosened and smooth.
There are more children to be tended to on any given night, and the last one left is Love. Love is actually a dog with long, chestnut fur and floppy velvet pancake ears. He often comes round with me to tuck the children in, as he has more patience than I do, and will let the children pet him until the blinds of their eyelids slide down. He curls up with me in my bed and licks my hand before we both settle in, welcoming the dark and the still, breathing, separate but not alone.