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"Like a Ship Safe at Anchor"
Myra’s Story
My father said faith
and I said to my Father,
Oh, I have faith, Father
For what else do I have?
and my Father said,
It is good to have faith, child,
what else is there to have?
(from Myra’s poetry, sent to me by her daughter Carolyn)
Loud shrieks came from room 23. I’d never heard a patient make so much noise. She was 64 and suffering from ovarian cancer, and seemed shriveled almost to nothing, making it hard to believe she could be the source of such commotion. The room was semi-private but the second bed was empty; no one could have shared a room with her. When I entered I felt her terror. I could almost touch it with my hands. But I couldn't get close. Her fear was not only in her voice; it surrounded her like an electrified fence, keeping others away, for the sake of her own protection. I just sat by her at a respectful distance and sang for a while, my notes mixing with her screams.
A few days later, when I arrived, she seemed to be asleep. A chaplain entered the room, wanting to ask her a few questions. She tapped Myra lightly on the shoulder. At the moment of contact Myra broke the silence with an ear-piercing screech, sending the chaplain out of the room. The screaming did not stop. Myra clearly did not want to be touched, and I discovered quickly that she will lash out at me if I try. I kept my distance, touching only my guitar, and sang to the screams, an eerie duet that persisted until her cries began to subside.
Myra was a mystery to everyone at the hospice. She communicated only through loud terrified noises. They told me she was schizophrenic, but the label didn’t help me understand who she was, and where her fear came from. She was like a homeless person with no connections, whose mind has finally snapped, whose total incoherence keeps her forever outside the borders of meaningful human contact. She was known only as "the woman who screams."
When she hears a voice singing to her the screaming lessens, just a little, but enough to notice.
One evening, about a week later, I find someone else, a younger woman standing beside the bed. I feel her frustration as she tries to soothe Myra while the screams continue without ceasing. But I am happily surprised to discover that Myra does have some connection to the world: this other woman is here.
I arrived last Wednesday night, March 21. Saw her on Thursday. I am amazed at how emaciated she is. Immediately, upon our first visit, she is happy to see me, scared, and agitated.
As I go into the hallway after I’ve said goodbye, I stand over a prayerbook and shed my first tear. Immediately Dorien, a pastoral counselor, is at my side asking if I need help. I am amazed at the responsiveness of the environment. Expressive artwork everywhere on the walls, in fact, the hospice was created by an artist around his private collection of art, donated and on display throughout the hallways.
I leave to meet Mary and perhaps see a play. I drive around for an hour and a half, trying to integrate what is happening. I realize I want to go back, to be with my mother, and cannot fathom sitting in a theater.
I return to the hospice and visit some more. This time, her head is almost locked into position, backwards, her jaw also locked. Her breathing is heavy and measured. She lies with her eyes open, but it seems she is very peaceful. Sitting with her I am overcome by a sense of immense peace. I feel Al is there, also, big Grandma, and her parents (Jacob and ?, Poppy’s parents), also Aunt Helen. So many loving souls ready to guide her across.
They know her fear, and know she need not be rushed. There is time, her own time, to make the journey.
- from Carolyn’s journal
Carolyn visits her mother every day. Our views of her differ greatly, mine as Myra’s music therapist, Carolyn’s as her daughter. Carolyn reaches her mother in ways no one else can. The bond between them is palpable.
I tell her some things, that I love her, that I will be okay. that Gerry will be okay. That I will look after him always, and we will look after each other.
I tell her what I sense in the room, that Al, and Aunt Helen, big Grandma and her grandparents are there. I tell her G-d is here, holding you. G-d is holding you in His loving arms. There is nothing to fear.
It seems she hears me, feels comforted by this. I tell her I love her, I will miss her, like crazy.
In the early days of my visiting I rarely see Myra at peace. She seems to need the voice of someone who knows her and loves her. But she is often resistant even to this, shouting away a familiar voice as if it were not love but an assault.
Gerry leaves and I sleep at the hospice. I try to sleep in the room with her but she is screaming. I leave at 3 am to sleep on the lounge couch. I sleep for about 3-4 hours and am awakened by the group having their morning coffee meeting. Ugh.
Down to Starbuck’s for morning coffee. Return to Mom’s room and hang out with her. She is increasingly agitated now. She alternates between extreme agitation and peacefulness and serenity. When I rest in the room while she is peaceful, I have a sense that all will be okay. . . .
The next days (Saturday and Sunday) my visits are short to my mom. I feel the exhaustion coming on. My mom is very distressed now, though the nurses are seeing this as a sign that she’s got more "fight" in her.
When I see her on Sunday night, she is hallucinating, saying, "I’m afraid." I say not to be afraid, its okay, G-d is there with her. She says there’s a fire at her back. I ask the nurse if she could be hallucinating (they started her on morphine on Saturday) and they say, could be.
The first time I see Carolyn, she is standing by her mother's bed trying to comfort her. Her back is to me, but I sense frustration and even despair. Myra continues shouting out her fear.
I sing many songs, trying to find something that will soothe. Carolyn, looking exhausted, sits in a chair in a corner of the room and cries. Myra begins to be quiet, and I am fighting back tears.
On Monday, I go in in the afternoon. I am blessed to be there when Charles, the music therapist, arrives with a guitar and asks my mom if he can sing to her. I can’t believe how respectful he is to my mother. He speaks to her calmly, directly, and tries to understand her answers, though she is difficult to understand. He asks if she wants to hear music. I am so thankful she says, "yeah" because she has been agitated while I am with her in a way I can’t comfort or console her (her arms waving wildly, pushing me away, at one point she even spit at me, "Get out! Get out!")
Then Charles begins to play gentle bonny doon type ballads and she is lulled into a state of deep peacefulness. He plays "It’s a Wonderful World," and I encourage him to play more "standards" 40s tunes, show tunes. He plays one or two other songs and I say, she likes the Beatles and Dylan. He turns to my mom and says, "Oh, I have a song for you." He is a gentle gentle soul.
He begins to sing "Let It Be" by the Beatles. "When I find myself in times of trouble Mother Mary comes to me, speaking words of wisdom, let it be. And though it may seem cloudy there is still a light that shines on me, shine until tomorrow, let it be." During the musical break, he is strumming, and my mom lifts her head and says, "Let it be, let it be." I am in the corner behind her back, watching her, and I am crying from the moment he hit the first note. It is so relieving to have someone else tending to her, holding the space, it allows me to have my grief and also to just watch how beautiful and amazing my mom is. I am so grateful for these moments.
Charles finishes "Let It Be," and I ask him to play it again, which he does. She is quiet throughout. When he is done, she starts getting agitated again, and we understand she is done listening. I thank Charles, tell him he is such a blessing, she hasn’t been this calm in many many days. He says goodbye and that he will be back tomorrow. I am grateful for this.
During my next visit Myra is still terrified and screaming. Carolyn is present. She has told me that her mother finds comfort in Christian as well as Jewish tradition. I find a song, actually a soft and gentle hymn, that speaks of giving one's fears to God:
Is there a heart o'erbound by sorrow?
Is there a life weighed down by care?
Come to the cross, each burden bearing,
All your anxiety, leave it there.
Myra becomes quiet and falls asleep almost immediately. But for one brief second she holds out her hand and allows me to touch it very lightly.
The pastoral counselor came and spoke with my mom, and again, I felt incredibly blessed to be present for this conversation.
First, the counselor asked if my mom was religious. I said she liked the Old Testament, Psalms, and also found great comfort in Jesus. After reading a kind of scary psalm (my enemies will be smitten etc), my mom got kinda upset and agitated.
The counselor asked my mom if she was afraid of dying, and my mom said yes. The counselor asked why, asked if she thought G-d was there, and she said, no, that’s why she was afraid. The counselor said, that’s a very lonely feeling, to feel abandoned by G-d. Can you feel that in your heart? Can you call out to G-d and let Him know you can’t feel His presence? My mom yelled "Where are you G-d? Where are you, G-d?" again and again.
Then she got real quiet. The counselor kept talking, it’s scary and lonely to feel like G-d has abandoned you. And of course we can never know how it will be when we make the journey. But it’s good to let yourself feel your pain, and your longing for G-d, and your fear, and to call out to G-d and ask Him, and see if G-d answers. He doesn’t answer in words, but just notice what happens.
Then she encouraged my mom to feel lovingkindness towards herself, the way we would feel lovingkindness towards a frightened child, and imagine that that is how G-d feels towards us.
My mom is quiet and thoughtful and listening to the counselor and seemingly peaceful. Someone has named this fear that she has lived with for years. The counselor talks to me as she sits with my mom, asks how long my mom has been sick, I say 3 and a half years, 2 years bedridden, she’s had no pastoral counseling in this time, no one to talk with about her fear. It is an amazing blessing to have her here, talking to my mom, naming the unnameable. . . not overriding my mother’s feelings, but allowing her to have them, that gives her peace. What a teaching.
I go into the lounge with the counselor and say how hard it has been to talk about any of this with my mom, she didn’t want to talk about her illness, got extremely agitated, but I also notice that I have been observing the taboo out of fear. I feel sad that she has not been able to talk about it all this time.
Then I go back in and talk to my mom. For the first time, we can talk about her dying and how she feels about it. It is amazing to have this opening. I say, I didn’t know that you were scared that G-d wouldn’t be there. Yeah, she says. She asks, "will you be okay? will you be okay?" I say, "I will, mom, I will be really okay. I’ll miss you a lot." She says, "Maybe I’ll see you up there." This is her first acknowledgment and it is so beautiful and painful to hear it. I say, "I really think you will, or something like that."
Then she gets really quiet, and she said, "How do you know?" I asked, "do you mean, how do you know that G-d is going to be there?" and she said, "Yeah." And I said well, we don’t really know until it happens. That’s where faith comes in. That’s where faith is all we have. And I remembered a poem she had written and I quoted it back to her. "My father said to me have faith. Oh, I have faith, I said. For what else is there?"
And she got quiet for a long time after that.
My greatest possible allies in my work as a music therapist are the members of the patient's family. So often family members can hardly deal with their own fears, and so they become very protective, even overprotective of their loved one. They don't allow me to get close, and I respect that. But when the family member "gets it," understands that music therapy need not be an intrusion but can be a way of reaching the person "with sighs too deep for words," then I am the one who feels empowered.
Carolyn speaks to me of her shame and feelings of isolation. This incoherent and hysterical woman is her mother, but Carolyn fears (and not without reason) that her mother is known only as that crazy screaming woman. I can feel Carolyn's humiliation, but I also see how she is with her mother, and I tell her that if we work together I am confident we can help Myra overcome her fears and make a peaceful transition. I have seen it many times before: patients who struggle with so many unresolved conflicts, whose fears seem to swallow them, gradually making their way to some final moments of peace, sometimes with the companionship of compassionate strangers. My past experience, as well as my present sense of Myra, tells me this will happen also with her. Carolyn listens, and I feel her skepticism. "Yeah, right," she seems to be saying, without needing to speak the words. I love Carolyn’s doubts.
I say to her, Mom you are amazing. And she says, "Amazing grace."
We are waiting for Charles to come and do another music therapy session, and I suggest we can have him play "Amazing Grace." She likes this.
She rests now, with the classical music station playing on the radio behind her head. There is a deep peace about her, ever deepening. I am so glad she is getting this kind of attention, where people are speaking to her, languaging what is happening. It is an unbelievable gift.
Charles comes and sees that my mom is sleeping, and I am resting. We go into the lounge next door to my mom’s room and talk.
He asks about my mom’s fear, and I explain to him about the schizophrenia. I tell him the history, and also what Jeane said about my mom’s soul leaving at 30, and how I sense that half of her is waiting to help her across; and that the parts that are left are scared, but a large part is okay with all of it.
He says, he believes the soul is intact and knows the way. It is the frightened fragmented parts of the psyche that can be connected to the soul so they can make the journey. He asks me more about my mom’s fear and I say she has probably been afraid all her life. That she grew up in fear.
I also tell him that my mom is a classical musician and responds well to music, it is a great healer for her.
He says that we can work together to create a spiritual atmosphere to help her resolve her fears before she crosses over. "Can she do that?" I ask. He says, I think she can.
He hugs me again, and says they will not abandon my mom or me in this process.
I leave feeling a bit unsettled by his offer. Why now? Why ask anything of my mom? Why not just let her go? Why set up one more expectation that cannot be fulfilled, one more hope to be dashed, one more hoop to make her jump through? Why not just let her be?
And why bring me into this? My distrust is very high. Is this for his gratification? For him to feel like he accomplished something? He is using my mom’s death (now isn’t that a highly paranoid and morbid thought). All my trust is out the window.
And yet, I wonder, What if this is an opportunity for me to work with my fear and trust issues as well? What if, like everything that has been provided up until now at this hospice, one amazing gift after another that has miraculously appeared, this is the miracle my grandparents have been praying for? Is it possible?
Already it is a miracle that someone has walked into that scary hospital room and seen me there with my mom and said, this must be so hard for you. We see your suffering. We will not abandon your mom OR you.
That someone has seen my mom and treated her as a human, talked to her with respect and love and tenderness and understanding and not condescended or called her hon or sweetheart and used these terms of endearment as a way to not see her. That is the miracle.
So yes, maybe I can trust, just a little bit, and be open, and see what wants to happen.
One night while Carolyn is resting on the couch in the piano room I bring my guitar and sing for her, while she is refreshed by tears of exhaustion.
The following evening I find Myra screaming as loudly as before. But this time whenever I sing she stops. We are talking to each other, no words. Her hand is leaning on the bed rail. I put my hand next to hers, careful not to touch her. With her other hand she takes off her watch and gives it to me. I am moved by this unprecedented act of trust. Carolyn says Myra is letting go of time. She is also letting me into her terrified world.
By now I am spending most of my time with Myra. Now she quiets down whenever I sing, and sometimes goes into a childlike sleep. And today something new: strumming the guitar alone is enough to calm her. Before she had to hear the sound of my voice; now the instrument alone is enough to remind her she is not alone.
One night Carolyn asks if she can borrow my guitar. I didn't know she played, and I'm always happy when someone else wants to do the work! This is what I hear, a song by Kate Wolf:
Kind friends all gather round
There's something I would say
That what brings us together here
Has blessed us all today
Love has made a circle
That holds us all inside
Where strangers are as family
And loneliness can’t hide.
So give yourself to love
If love is what you're after
Open up your heart to
the tears and laughter and
Give yourself to love,
Give yourself to love.
Carolyn's voice trembles slightly as she holds her mother with those words. Give yourself to love, mom, let the fears go, have trust in your journey. Meanwhile I keep a quiet, respectful distance - I can do no more, I have no voice at that moment. I only feel blessed that the love of their strong bond touches me too.
And from that day onward, with Carolyn taking increasing responsibility for the music, I feel even more that we are partners in Myra's healing. I become the follower, learning from their intimacy, trying to find a comfortable place within it.
But a few days later I find Myra very agitated. It takes a long time just being with her to see any change. The demons I cannot see are trying to take their revenge. But after that, another trusting step: she reaches out, grabs my hand, and squeezes it hard! She is not afraid of me anymore. Every time I see her, she relaxes her boundaries just a little; the steps she takes are barely perceptible but they have direction.
I let Carolyn know what I am feeling: that Myra allows me to come this close to her only because she knows that she is loved.
The weekend is approaching, and I will be away for a few days. I don't want to lose the momentum, the slowly increasing trust Myra is building through the music. Now that I know Carolyn plays the guitar, I rush home to get my spare one so that I can lend it to her while I'm away.
When I return three days later Carolyn tells me she has been singing a lot for her mother, and that while Myra has still had many rough moments, the music has been helping her to rest. It is settled: my spare guitar stays in Myra's room until the very last day.
We continue taking turns, Carolyn comforting her mother in music as only a daughter's voice can, I taking over when Carolyn needs to rest. Sometimes I sing and play harmonies while Carolyn sings to the other guitar. The music becomes a constant, reliable daily presence upon which Myra can softly rest.
Early in the week I dream that we are doing a ritual for Isoke, trying to create enough safety and trust for her to reach out her right hand to be held.
In the next day, during a music therapy session with Charles and me both playing and singing for my mom, she reaches her hand out and grabs (!) his hand, and squeezes it. He is amazed by the breakthrough, the trust that is revealed in this action. It is not until later that I remember my dream. She is beginning to trust, to let herself be held. It is so beautiful, so miraculous, so tender.
Yesterday, I said to her, its like you’re allowing your heart to open and to let yourself be touched by all the love that surrounds you and letting G-d’s light flood into your heart. She listened quietly, and it seemed okay to go on
I said, it seems like you are getting a healing that maybe you’ve been waiting for all your life. . . . Does it seem that way to you?
I waited, and she sighed, and in that tender way she has when she is half-sleeping/meditating, said, "yeah . . ."
I am asking everyone, Charles, Jeane, Rhaea, Liza, Can I trust the beauty of what is happening here? Can I trust the grace?
They all say, Yes. Charles says, he had a similar experience with his own father, unavailable to him throughout his life, and such a tender connection in the last few days. He said it was something that has continued to nourish him. I can feel myself wanting to hang on to this preciousness, this tenderness, I feel with my mom, finally. And yet, it is another lesson in not grasping. Just being with what is, and allowing myself to feel graced by it. Last night I got an e-mail from Leila saying Rob had a similar experience with his mom, and I wake up with this awareness that sometimes in this process, grace attends.
Jeane says to me, What is real and unreal? Trust what you are experiencing. You are in ceremony. Blessed be.
Carolyn has turned me on to Kate Wolf. I was determined to learn that song (and since then have used it with many other patients). I find another one, also by Kate Wolf, that truly expresses my feelings about what is happening with Myra:
Here I stand alone again
Reaching out across the room
Quietly the sun's gone down
And sailors seek the harbor
Look at us sailing in
Decks awash, but still afloat
And now the wind's come up
To rock us on the water.
Riding out the storm
Like a ship safe at anchor
Waiting out the long voyage
Round the Cape of Hope we'll take her.
And now the harbor appears to be in sight. I sing this song often for Myra as she nears the end of her journey. She is entering a terminal coma. She is much quieter now, but I still notice rigidity in the muscles of her face and arms. This rigidity markedly relaxes during the music. Her stiffly open mouth and eyes slowly begin to close.
My mom really is getting closer, I am exhausted now and it is hard to write much. She is very very peaceful and only a little afraid.
In the past week, I dreamt that the apocalypse happened (8 nuclear bombs fell in Japan) as had been predicted by the Bible (this I dreamt after Passover Seder). And yet the reason was that we would understand, that even after the worst thing that we could possibly imagine actually did happen, G-d’s love and presence would still be known, and there would be redemption in this knowing.
The next night I had a long dream about taking my mother to a play with a group of friends; beautiful colors everywhere. She was sick, not quite as sick as she is now, but obviously unable to sit up. I took her back to her apartment. There were beautiful things everywhere, pieces of art. One installation was 4 paintings I had painted, each of a large butterfly fish. Beautiful deep blues and yellow. I loved these paintings as I looked at them (2 on each wall facing each other). Something about lighters. Something about understanding all the creativity and potential that my mother had, and how much beauty and creativity she possessed. I was excited about this, inviting her to do projects, and she said, now is not the time for that. now is the time for me to be moving on, I am not going to be doing those kinds of things in this plane anymore. I didn’t feel upset, just understood the rightness of that, the okayness of it.
In waking life, I say to my mom, how well she has done in this life, how she has suffered but fought to function, to have a relationship, to always let her kids know that we were loved, that we were good. That she struggled to keep a job, to keep a life, and to not give in to the madness. And now the struggling was over. And her soul is pure, and ready to come home. That there is a part of her soul that has already made the journey and is waiting for her, and that this will be like coming home. As I say these things, she takes it in. She gazes longingly into the distance, a gentleness over her features. Sometimes I ask if it’s okay and she gently whispers, "yeah." Other times she grabs my hand and squeezes. Often, I just watch as her face relaxes and her breathing slows. She is beautiful.
Sometimes, she gets afraid, and I can see the terror in her eyes. Yet a song, a sweet and loving word, a gentle presence sitting with her, goes a long way in helping her find the relaxation in her once again. I am peaceful, I am free from suffering, I am held by G-d’s grace. Blessed be. Baruch Hashem.
When I visit Myra again she is tense and stiff and her hand withdraws from my touch. I sing her a hymn/lullaby: "Angels watching ever round thee/All through the night," and I take her hand again. This time she grasps my hand, squeezes it tightly, and holds it for a while. Her face softens and her mouth closes.
Carolyn takes pictures of Myra and me together. She tells me that it is unlike her mother to allow outsiders close to her.
The next day I find Myra noticeably weaker. Her eyes and mouth are still set wide open. At first she just barely resists my hand, which wants to hold hers. But after I sing to her for a while, she begins to invite my touch. She squeezes my fingers just perceptibly - with all the strength she has left. I sit with her for a while like this, and with my other hand I hold her head and stroke it. Myra’s hand settles into mine, the tiniest hint of movement welcoming me. This is the closest she has let me come, the most intimate touch she has allowed me: she has finally accepted the love of a stranger. While I comfort her Carolyn sits at the other side of the bed and sobs.
Carolyn's brother Gerry arrives, later than planned, delayed when his car breaks down. This delay has given me those last few intimate moments. And now I leave the three of them alone for a while; now time belongs only to them. When I come back I find Carolyn singing. Myra's eyes have finally closed.
The following morning Carolyn calls me at home to tell me that her mother has just died. When I arrive at the hospice Myra is lying quietly alone while a recording of sweet guitar music plays. There is no more tension in the muscles of her face. I can touch the peace in the room, which surrounds me like an angelic presence. Carolyn and Gerry come in to say their good-byes.
My mom passed yesterday morning, 10:50 a.m. Eastern time. The nurse cleaned & turned her, and then turned on the Hawaiian music cd and left the room. When she went back to check on her, she had gone.
I went to see her later that morning. I could sense her presence still in and around her body, expecting her to breathe or move her mouth at any moment. Stillness, yet presence. She was beautiful, and there was a profound sense of peace and beauty in the room. It was easy to sit with her, and touch her and hold her, even though I had been afraid. When I got there, Charles was already sitting with her, which also helped me approach. After a while, he left, and I sat alone with her and we talked, and I sang to her. I felt like I was still helping her find her way, though it didn’t seem like she was needing the help any longer.
That morning, I had had a hard time going back to sleep. I went into a meditation instead, and saw a vision of the boat that had been waiting to take my mom up the river of light, that had been waiting peacefully, without linear concepts of time, until my mother was ready to let go of the shore. I saw the part of my mom that was still on the shore releasing and being enfolded into her Soul/Higher Self, a beautiful being of golden light that enfolded this newly arrived aspect of my mom into her golden Self.
Throughout the day, I had a sense of her lying peacefully on the boat, not traveling so much as lolling up the lazy river. By nightfall, it seemed like she was well rested and beginning to enjoy the company around her, to find joy in her new sense of freedom and release.
The day was incredibly beautiful. A warm breeze, sun breaking through the clouds and storminess that have been with us since I arrived (snowstorms and lightning over the past three weeks). As Gerry said, it was stormy and now the sun is out; the stock market was crashing and now its coming back; mom was suffering and now she’s not suffering any more.
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I want to hold you to my heart
And shield you from all pain
But you must go a separate way
If we're to meet again.
I'll guide you with kind loving hands
That will not push nor clutch
And protect you from my fierce desire
To mother you too much.
When you're hurt I'll comfort you just enough
So you can bear the pain again
I'll discipline to make you strong
Though you won't understand.
And if my efforts aren't in vain
When my precious chore is done
I'll have given you your own true self
It's rightfully yours, my son.
- from Myra’s poetry
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