Side by Side- The gift of meeting Elizabeth Edwards.

"I know right now what I will die from. Breast Cancer will take my life". These were the first words in her speech. It was at a fundraising event for Ridgeview Medical Center's Women's and Children's Center. Elizabeth Edwards continued to speak about her own battle with cancer in ways that minced no words. She offered many insights into her struggle. She was obviously not well, yet she had a certain radiance about her smile.

So a week before this I was asked by the Ridgeview Foundation to come up with a song that they wanted everyone to sing to Mrs. Edwards at the upcoming event. They wanted the theme to be something about our connections to each other, something about camaraderie, something about it being all of our responsibilities to care for one another. "Hmmm", I thought, what to do, what to do?

This could be cool or a complete disaster.

After a lot of thought, I made a list of songs: "Lean on Me", "Stand by Me"... at the end of the list, for the heck of it, it occurred to me to add the song "Side by Side", a song from the Great Depression era (lyrics below). I wasn't the most fond of that idea.

So a couple of days go by and I get an Email from the Foundation. After they, and the CEO and others reviewed the list, a phrase from "Side by Side" caught their attention: "Oh we ain't got a barrel of money". This seemed perfect for a fundraising event. So they chose Side by Side. The event was actually several events that required a lot of "healing" types of music. I said I couldn't do 4+ hours of background, plus lead this song. So Micheal Monroe was hired to play for part of the event.

So here I am- I'm going to sing for a Senator's Wife, possibly a future First Lady (let's not even go there right now), and I have to sing "SIDE BY SIDE". REALLY- of all the music in the world it's that song?! To 500+ people? And to top it off I was going to do this in front of Micheal Monroe?! REALLY???!!

Boy was I wrong.

How many times had I told people ALL music has that capacity to be healing? I guess I needed this lesson to be driven home to myself that day. So she gives a most eloquent and beautiful speech, and then it's my time to lead this group of 500 people in song. Before we do, the CEO of Ridgeview, Bob Stevens talked to the crowd. He spoke of how here in Minnesota we believe that we are all connected and that we care for each other "through any weather". He asked all the people gathered to hold hands; to think about all the people they are connecting to and to all the people in our community we are reaching out to connect with.

We were in a brand new, but as yet unfinished and cavernous section of a new Addition to Ridgeview. Suddenly this cavernous structure was filled with a warmth, there was a palpable energy shift. I thought to myself, I wish there was another piece of music I could use right now. But this was the music that was chosen. The words were put up on the LCD screens. As I hit the first chord on the guitar I suddenly knew that this was exactly the song we were meant to sing in that moment. So we sang the song together, 2x through:

Oh we ain't got a barrel of money.
Maybe we're ragged and funny.
But we'll travel along, singin' a song,
Side by Side
Don't know what's comin' tomorrow
Maybe it's trouble and sorrow,
But we'll travel the road, sharing our load,
Side by Side
Through all kinds of weather, what if the sky should fall?
Just as long as we're together, it doesn't matter at all.
When they've all had their quarrels and parted,
We'll be the same as we started,
Just travelin' along, singing a song,
Side by Side

The energy in the room was magical... like you could physically feel the bonds that connect us as human beings. I've only felt it a few times before: at a Lakota sweat lodge, at an interfaith memorial after September 11th (topic for another story), and now here.

After the song there was a moment of complete and total peace in the room. I felt a hand at my back and turned around to be embraced by Elizabeth Edwards. I felt her tears on my shoulder and then saw she had tears streaming down her face. I looked out and every face had tears, not of sadness, but of a bond to each other- a sharing of many healing journeys. Many in the crowd were cancer survivors, families, and caregivers. The tears were also a part of this shared understanding that in every story, and in every struggle, there is an opportunity to heal, and an opportunity to help. It didn't matter what age we were, what gender we were, what race we were, or what political party we were: we were one people standing "Side by Side". After our hug, she said to me, "That meant more to me than you can imagine, thank you". I sensed something very deep there, but let it go.

It was the reminder to me: ALL music has the potential to create sacred space where healing can happen.

Afterwards Micheal Monroe said, "That was really cool". It really was. Before I started the song I was worried I might embarrass myself in front of a musician I had great respect for. How silly was that?

At the end of the event, Mrs. Edwards handed me a copy of her new book, "Saving Graces". Inside the wrote and signed an inscription: "To the marvelous Christian- your gift of music is a true saving grace. Thank you for sharing it with me". She was such a kind woman and I am saddened to hear of her loss. But I am so happy I got to know this brave, kind soul.

Elizabeth Edwards saw much more than her share of "trouble and sorrow" in her life: the loss of a son, the loss of her marriage and the humiliation Mr. Edwards caused her. But she kept on. While the tabloid vultures attacked her, she just continued on in her efforts to advocate for cancer, women's health issues, and health care for all. We have lost a brave fighter in the war on Cancer and in the fight to end poverty, and I know she will be missed by many.

I pray that she and her family, including Mr. Edwards, were able to find some healing in these last days, and that her family will continue to find healing in the days to come. I hope she continued to feel, even in the media frenzy, that there were many there to walk beside her and others who face terminal illness. I pray her life taught others that carrying the load of others is a true "Saving Grace", and the responsibility of all of us.

"We shouldn't spend our time concerned about our dying, but concerned with how we will live however much life we have left."

Thanksgiving

I AM THANKFUL for the kindness of those who care for others. I am thankful for people willing to make sacrifices for a greater good, whether they be healer, teacher, activist, or soldier. I am thankful for this beautiful sometimes challenging life each of us is given. I am reminded daily that each day, each moment on this earth is a gift not to be taken for granted. I am thankful that even in suffering there is hope and in darkness, light. I am most thankful for the love I have been given from the creator and from the people I love.

I am thankful for a warm home on a cold night- for my son Noah and my partner Rachel- and for all of my freinds and family- both old and new. I am thankful for the beauty of the creation all around us. I am thankful for the cycles of life, and that in every ending there is a new beginning.

I pray for more peace, compassion, love, and hope in myself and the world around me.

Wings of a Dove

There is an old country song, "On The Wings of a Snow White Dove", by Ferlin Husky. I saw a woman, Dorothy, in hospice for several months. This song was her favorite song. Every session needed to start with this song. One day I asked her why this song was so important to her. She said, "It reminds me that no matter how bad things get, that God is always there". Dorothy shared with me the story of the death of her son when he was in his mid 40's. She said on the day he died a white dove appeared at her house many states away. She never saw the dove before and never saw it again. She said she felt it was her son coming to say good-bye. She told me when she died she had the image of doves coming to take her home.

The second required song in every session was, "How Great Thou Art" dedicated to her son John. He lived in Colorado and always loved the mountains and nature. He was buried in a cemetary on a mountain in Colorado. Dorothy said the song takes her to that place where she feels connected to her son.

The evening before she passed away, a hospice social worker entered her room at the nursing home. She noted that the client was looking up at the ceiling. The client appeared to be seeing something the social worker could not see. When the social worker asked what the client could see, she said, "I see the doves, they've come for me".

By the time I saw Dorothy the next morning she was unresponsive. Her respiration was rapid and she had some agitation. When I started the song, she opened her eyes and looked up, apparently seeing her doves. She then closed her eyes. On the second verse of "How Great Thou Art", I felt the hairs on my arms suddenly raise up. A second later, she opened her eyes, sat up in bed, reached out her arms, and exclaimed, "John!" I asked her if John was there and she said nodded and said, "uh huh". Then she said the word, "home". She then sunk back in the bed with a smile on her face. She kept smiling through the rest of the visit and her breathing slowed down. When I touched her hand to say good-bye she grasped my hand and held it firmly. With closed eyes, she said, "Thank You".

A few minutes after I left the room Dorothy passed away peacefully.

Music helped Dorothy in her preparation for her passage. It helped to keep that connection with her son. It supported her journey in a way that matched her own spirituality. Experiences like this humble me, and reaffirm that there is love and beauty even in the face of suffering.

Here are the lyrics:

On the Wings of a Snow-White Dove
By Ferlin Husky

On the wings of a snow-white dove
He sends His pure sweet love
A sign from above on the wings of a dove

When troubles surround us, when evils come
The body grows weak, the spirit grows numb
When these things beset us, he doesn't forget us
He sends down His love on the wings of a dove

On the wings of a snow-white dove
He sends His pure sweet love
A sign from above on the wings of a dove

When Noah had drifted on the flood many days
He searched for land in various ways
Troubles, he had some but wasn't forgotten
He sent him His love On the wings of a dove

On the wings of a snow-white dove
He sends His pure sweet love
A sign from above on the wings of a dove

Here's a link the the original recording by Ferlin Husky: http://www.youtube.com/watch?v=yFMPRIcc6yQ

Please note, as always, names have been changed to preserve client confidentiality.

Cure vs. Healing

Here's a little follow-up to my last post...

Wise words from Fred Recklau:

Cure vs. Healing -Fred Recklau

Cure alters what is; Healing offers what might be.
Cure is an act; Healing is a process.
Cure acts upon another; Healing shares with another.
Cure manages; Healing touches.
Cure seeks ultimately to conquer pain;
Healing seeks to transcend the pain.
Cure ignores grief; Healing assumes grief.
Cure encourages mystery as a challenge for understanding;
Healing encounters mystery as a ready channel for meaning.
Cure rejects death and views it as defeat;
Healing includes death among the blessed outcomes of caring.
Cure may occur without healing;
Healing may occur without cure.
Cure separates body from soul; Healing embraces the soul.
Cure tends to isolate; Healing tends to incorporate.
Cure combats illness; Healing fosters wellness.
Cure fosters function; Healing fosters purpose.

Healing What Can't Be Cured

Recently a man who had suffered a profound loss said to me, “For so long I’ve been angry- angry with myself, and angry with God for allowing this to happen. But then I look at all the kindness that has been shown to my family and myself and I realize that God is working through them. When I thought God had left me alone I suddenly realized he was surrounding me with love and I was just too hurt to see it. I can’t understand how God can allow such pain, but at the same time offering me kindness. It’s changing who I am.”

A dear friend and very kind man- a chaplain, who helps others through grief also recently had a major loss. He told me, “People keep asking me how I’m ‘getting through this’. But I tell them I am not ‘getting through’ this. It is getting through me. It is moving through me and transforming me. I can never be the person I was before this loss. It hurts me every day, but every day I know I am gaining a deeper understanding of who I am and of my relationship with God.”

Nothing can every take away what these two men have lost, but through the process of their grieving they are finding healing.

In the course of my practice, I have worked with peple who have had chronic pain and chronic conditions, children with special needs, people with mental illness and chemical dependency, neurological disorders, cancer, and for the last decade I have worked primarily with people at the end of life through hospice & palliative care. I also provide grief and bereavement support to those who have lost a loved one. This work has given me many perspectives on healing. I have seen people go through great pain and suffering. I’ve seen people struggle with the pain of fibromyalgia, children struggle to overcome disabilities, the debilitation of Parkinson’s Disease, the pain and fear of cancer, the pain of losing a parent or a child. I’ve seen many struggles. I have heard many questions over and over,

“Why me?”

“What did I do to deserve this?”

“What is going to happen to me?”

“Why is God letting me suffer?”

“Why isn’t there a cure, even when I pray for one?”

Then there is the question that underlies the others: “Where is God?”

There are no easy answers to these questions. These are questions I asked and struggled with myself in recovering from strokes and learning to adapt to the changes they brought. Until we can move beyond these questions, healing can be very difficult. The first part of healing is acceptance.

In the movie, Evan Almighty, God comes to the wife of a modern day Noah in a time of her despair. He says to her that God answers prayers as opportunities. “If we pray to be happy, do you think God fills us with happy feelings, or does he offer opportunities for happiness?  If we pray for courage, does God magically fill us with courage, or does he offer opportunities to be courageous?” By the same token, maybe in a different way, suffering presents us with another kind of opportunity.

The Buddah tells us that “All life is suffering”, and that through compassion, and working to alleviate the suffering of others, we alleviate our own suffering and are offered opportunities for happiness. When we realize and are mindful of the suffering of those around us we also tend to stop judging others and instead find compassion.

When his disciples ask Jesus, “Who has sinned, this man or his family, that he is blind?”, he replies, “this man is blind so that the work of God might be seen in his life”. Both the Buddah, and Jesus challenge us to see pain and suffering as an opportunity.

I have been asked many times how I can work with the dying and still believe in God? My answer is always- HOW CAN I DO THIS WORK AND NOT BELIEVE?!

I am so blessed to do this work. I see God working in our lives EVERY DAY.

I see God in the soothing whispers of a loved one, in the caring hands of Home Health Aides and Massage Therapists, in the skill and dedication of physicians and nurses who have dedicated their lives to alleviating physical pain and suffering, in the compassion and wisdom of social workers, in the comforting presence and kind eyes of a chaplain, in the laughter of children and in the tireless efforts of volunteers and community members to support families through one of the hardest times in their lives.

I have felt the love of God wrap it’s arms around a client and their families as death nears. I have felt the peace of God in that space where before there was only anxiety and despair. I’ve seen angels from this world and I’m pretty sure I’ve felt the one’s from the next draw near.

I have learned to have a new understanding of the way God works. Sometimes I have been angry at God and had my doubts, but that doubt doesn’t remove God’s presence, and that anger is something, as a chaplain friend of mine says, God can handle. It has caused me to redefine my understanding of things like HOPE, FAITH, HEALING. I have seen it redefine these things for my clients as well.

In order to do my work, I have to accept that death will be the outcome. I can’t change that. I have to accept that and then focus on what I can do to change the experience.

Acceptance.

Can we accept that for now there is no cure for diseases and conditions like diabetes, chronic fatigue syndrome, mental illness, Alzheimer’s disease, for the disease that is terminal? Can we accept that there is no way to completely undo the damage from a stroke, heart attack, or an accident?

Does accepting that there is no cure mean it is the end of healing?

The end of Hope?

The end of Faith?

The end of Joy?

No.

It is a time when greatest healing can occur!

I see great healing every day: Healing of broken relationships and families; healing of the grief of loss; healing the feelings of the fear, isolation and depression; easing of pain; healing and love cutting through the confusion of dementia, and the healing and reconciliation of a person’s relationship with the creator, no matter what name or tradition they use.

I have seen the profound power of faith. I have been so moved by the faith I have witnessed in those I have served: faith in a loving God and faith and assurance they are going to a better place. In hospice we don’t focus on death, but in living the last days with the best possible quality of life. There are tears, but there is far more humor, and laughter and joy.

I have felt an infant stop breathing and nearly pass away in my arms. I have seen young children struggle with the confusing and painful emotions of watching a parent die. I have seen people endure the worst pain one could imagine. I have seen parents agonize over the loss of a child. I have seen the pain in the eyes of family members when they realize their mom or grandma no longer recognizes who they are.

While I have witnessed many hard things, I have witnessed the power of healing. Although I have seen bad things, I do not question that God loves all of us, regardless of all of the things that we create to separate us from each other.

As a child, my Methodist Minister father always told me that there were two things that are most important to know:

1.      God Loves us all- no matter what may happen or what we do

2.      All of us are children of God

God does not forsake us. There are those among us every day seeking healing who may be struggling with this. You are not alone. You are also not alone if you feel that way. On the Cross, Jesus asked, “Father, why have you forsaken me?” This is the ultimate human question when faced with suffering and even Jesus asked it.

I cannot understand why God created a world that allows suffering. I only know that this is the world we are given. It took me time to see that my father was right, that God loves us all, but sometimes I can be very frustrated. Sometimes I have felt, as Patch Adams said, that God could work on some compassion. But God does give us opportunities to be compassionate. It is when we find that compassion for others that we find the divine- in ourselves and in that other person. Some say it is in giving us free will, that God allowed for the possibility of suffering. It is in the way we use that free will that allows us to make choices. We can chose to hurt, or we can chose to heal; we can chose to create or chose to destroy; we can chose to stand by and do nothing while others suffer or we can chose to act.

Many indigenous spiritual traditions teach us that life is a series of cycles- that in every death there is a rebirth. The Christian faith traditions offer great hope through the death and resurrection of Jesus. When we look to the rhythms of the worlds around us and even the larger universe we see cycles of death and renewal everywhere. We can learn from these things in our everyday life. It means that there is always a new day- always an opportunity for transformation. Each new day is a chance for a resurrection- a chance for a new birth. In all of the little “deaths” life brings- the changes, the losses, the sad times- there is a chance for transformation- a chance to grow, there is a chance to be made whole again as God meant us to be.

In all struggle and suffering there can be opportunities for healing- if we listen carefully and are open to all of the possibilities. It also offers opportunities for all those in the community to act as healers- to be the hearts and hands of God. Everyone has the capacity to be a healer- not just health professionals, but mothers and fathers; neighbors and friends; spouses and partners. If you pay attention you will find many opportunities. Sometimes being a healer is a way to find healing yourself- it sure has been for me. Most people who are hospice volunteers are those who have lost a loved one themselves.

We don’t have a complete understanding of why the creation of God allows for suffering. We never will. But God allows infinite possibilities for healing, for returning us to wholeness. While prayer may not always bring the cure we seek, it can bring the great healing we need.

Black Elk’s Prayer

Grandfather, Great Spirit, once more behold me on earth and lean to hear my feeble voice. You lived first, and you are older than all need, older than all prayer.

All things belong to you -- the two-legged, the four-legged, the wings of the air, and all green things that live.

You have set the powers of the four quarters of the earth to cross each other. You have made me cross the good road and road of difficulties, and where they cross, the place is holy. Day in, day out, forevermore, you are the life of things.

The Unbroken Circle

The following is part of an article I wrote for a Ridgeview Medical Center newsletter published in 2005. It was one of many experiences that has taught me God truly works in mysterious ways, that we are not the ones in control, and that there is an order larger than we can possibly understand.

One day I was contacted by an RN who was caring for a dying patient who had recently returned home from Mayo Clinic, having been unresponsive for over a week. He had said his goodbyes to friends and families, but seemed to have a hard time letting go. She and the family thought that it would be beneficial to have me play some music to assist him in finding a feeling of peace and support him as he made his final transition.

As I entered his home I noticed his family was gathered around his bedside in his living room. His wife, brothers, sisters, children, grandchildren, and friends were all gathered. When I asked the type of music he liked the best, his family said, "Country, Johnny Cash is his favorite singer". They also explained that he had a strong Christian faith background. After searching my memory for an appropriate Johnny Cash song to play in this setting, I thought of the old Carter family song, “ Will the Circle Be Unbroken”. This is a song that deals with death and the next life.

I pulled up a chair next to the patient’s bedside, adjusted my guitar in my lap, quietly shared my name and that I was going to sing for him. With the family encircling the bed and his wife seated next to him holding his hand, I began to play the guitar and he began to move. At first he raised an eyebrow, then he moved his head slightly toward me. I looked down and noticed his feet move slightly. When I began to sing the song, the corner of his mouth raised into a small smile. Then his eyes opened and he began to look around to his family gathered around. He squeezed his wife's hand. When the second verse came, he began to move his mouth to the words and sing. After the second verse and refrain, he began to close his eyes again and lay back into his pillow. I sensed a change and repeated the first verse and refrain. We all observed him take his final peaceful breath as I played the last chord. Although this was a sad time, it was truly a surprise and miracle to all of us!

After paging the nurse to return, the family asked to sing "Amazing Grace" and a few other hymns. It was a privilege to be part of this special event and it was so affirming of how music and spirituality are so integrally connected, and such an integral part of life.

The family requested that I play "Will the Circle Be Unbroken" at the funeral. Afterward, they gave me a small plaque in appreciation of my performance. I'm not sure why, but I placed the plague in the visor of my van that day and forgot about it.

A year later, I had my own personal health crisis. After many tests in Minneapolis, my doctors decided that I needed to have inpatient testing and evaluation done at Mayo Clinic. I was quite worried about the process and possible outcome. I was afraid that I myself might die or end up with a serious disability. I arrived early in the morning and I parked in the monstrous parking ramp. I was anxiously searching for something before going in to be admitted. As I pulled down the visor, the plaque fell onto the passenger seat. At that moment I felt a sense of peace and assurance that I really needed. It was as if God had just put a comforting hand on my shoulder. I stopped and re-read that plaque right there:

I said a prayer for you today

And know God must have heard.

I felt the answer in my heart

Although he spoke no word

I asked for happiness for you

In all things great and small,

But it was for his loving care

I prayed the most of all.

I looked up and at that very moment the sun was rising.

I somehow knew in that moment that everything was going to be all right.

That plaque helped to give me strength and reminded me that I was not alone during my time there. I found it to be very reassuring to have it with me during this difficult time in my life. This experience serves as a reminder to me that the care we give in hospice means something far more than we can understand and that sometimes in life our own caring and compassion for others can be returned in unexpected ways. That is one circle will never be broken.

__________________________________________________________________

Lyrics to Will The Circle be Unbroken that I used that day:

There are love ones in their glory, whose dear forms you often miss.

When you close your earthly story, will you join them in their bliss.

Will the circle be unbroken, by and by, Lord by and by

In a better home awaiting, in the sky, Lord, in the sky.

In the glorious days of childhood, oft they told of wondrous love.

Pointed to the dying Saviour, now they dwell with him above.

Will the circle be unbroken, by and by, Lord by and by

In a better home awaiting, in the sky, Lord, in the sky.

You can picture happy gatherings by the fireside long ago,

And you think of tearful partings, when they left you here below.

Will the circle be unbroken, by and by, Lord by and by

In a better home awaiting, in the sky, Lord, in the sky.

Why I'm doing this.

In my time as a music therapist in hospice, I've experienced some amazing things and met some amazing people. This spiritual journey forced me to question and then to deepen my faith. I don't claim to have the answers, but I have even more questions as the path unfolds. In times of great suffering I have seen great wonders. I have seen joy in the midst of sorrow, laughter in the midst of tears, comfort in the midst of pain, and healing even when a cure is not possibe.

I never cease to be amazed at the power of music and I want to share that. I want to share the way doing this job has changed me. I also hope to broaden the understanding of both hospice and music therapy.

I've decided to start this blog after encouragement from many people. Several people have encouraged me to write a book about the things I've experienced. I may do that one day, but at this time in my life that seems like a more distant goal. I plan to write about both past and present experiences here. I hope you will find it interesting. Thanks for visiting. I hope you will return.

Please note: I take client confidentiality very seriously. Names and sometimes places have been changed in order to protect the identity of my clients.

First Steps

It's hard to know where to begin....
I had always loved music, but was not sure what to do with it. When I was in my early 20's I went to school for music and stopped after two years because I really didn't really feel teaching music was the right thing for me. I spent time doing gigs at night and working in home health for children, and in group homes for the developmentally delayed. In that work I was always amazed be the way my clients would respond to music. I still was not really aware of music therapy. A few years later I started nursing school. Then a child, a very brave, very wise child, came into my life. When I met Luke, he was 4 years old. He had pretty severe cerebral palsy and a smile that could melt your heart. The cerebral palsy caused difficulty in controlling his muscles and would cause painful muscle spasms. I had a hard time understanding his happiness despite his struggles and difficulties. He had never really known another way of life and he was determined he would succeed. Luke taught me so much about life, courage, suffering, healing, and kindness.

Luke's cerebral palsy made walking extremely difficult. A physical therapist would come to the house to work with him in learning to use a walker. Luke tried very hard to walk, but it was very difficult. Then one day when he was 5 he said to me, "I can't do it" with tears in his eyes. He had never seemed to give up on anything until that moment.

The next day I had an idea. I brought a drum the next day the physical therapist came. I said, "Luke, don't worry about walking. Do you think you could march?" He had a puzzled look for a minute, then smiled and said "yes". The physical therapist got Luke standing with the walker. I began to play a march rhythm. Luke began to get a smile on his face. I watched as the muscles in his legs began moving in time with the music and he swayed with the beat. Then a moment that would change both our lives happened. He took a first step- then another. He picked his knees up and he marched---- for 30 feet! These were his first independent steps without someone holding on to his hands and arms. I knew instantly that everything I had thought was important as a musician was not- no performance for even thousands of people could ever compare to this moment. Music could do so much more than I ever imagined.

I began to do more music with Luke- singing, drumming, moving to music, and it had a profound effect. Through the process Luke was teaching me. In seeing the effect the music had on their child, his parents decided to research music therapy. They found a music therapist for him. I went with to Luke's second session and observed. Watching the therapist work and the way she used music to meet this child's needs, I realized that I had just found what I was meant to do.

The next day I met with an advisor at my nursing school. Out of the blue she asked me, "Have you ever thought about going into music therapy?" I realized at that moment the universe was not being subtle. God was calling and made it very clear to me what it was I needed to do. Within a month I had dropped nursing school, and began coursework at Augsburg College in music therapy. Just as Luke had taken his first steps, so had I.

I had know idea where this journey would take me.