Welcome to my Blog

This Blog is a collection of my thoughts and experiences as a music therapist and human being working with people at the end of their lives in hospice. In my experience I have seen some amazing things- things that have given me a glimse of something bigger. I have learned that in our suffering, in our doubt, there is also room for beauty and a deeper sense of the divine. Music taps into the rhythms of the earth and at the same time transcends it. I want to share my experiences from the past and from each day moving forward. Hopefully one or two people will find it interesting. Please visit my Web-sites at http://www.nielsenmtbc.com/ or http://www.musictherapycd.com/



Please note that I take client confidentiality very seriously. Names and sometimes other details have been changed to protect the identities of my clients.

Thursday, February 3, 2011

Mortality and Wholeness- a lesson from Science Fiction

"Beyond the reach of the ressurection ships, something began to change.
We could feel a sense of time as if each moment held its own significance.
We began to realize that for our existence to hold any value, it must end. To live meaningful lives, we must die and not return.
The one human flaw that you spend your lifetimes distressing over,
mortality, is the one thing, well it's the one thing that makes you whole."

-Cylon Model 6, a machine seeking to find a way to permanently end her immortality, from the re-imagined Battlestar Galactica.

Saturday, January 1, 2011

Everybody’s Got The Blues- Jake’s Story

Jake was an 8 year-old boy, who’s mom had endstage pancreatic cancer. I met Jake for the first time a couple of weeks before his mother died. Jake was very angry the day I came to see his mother. He was lashing out verbally at relatives, throwing objects, and almost pushed a television over. It was a warm summer day and I asked Jake to come outside with me to talk. When we got outside, Jake started to yell about all of the things he was angry about. “My life sucks”, “my mom’s sick and she’s going to die”, “My dad left me when I was little”, “I’m going to be all alone when my mom dies”, “We family’s poor and I never have what other kids have- now I’m alone”, “I just feel like laying down right here and dying”. “Now this jerk comes here with a guitar and is supposed to make it all better- yeah right!” This was a child who was in a lot of pain. I wanted to help, but he was angry at me too. He was angry at everything and everyone, including his mom for dying. He had no constructive means to express these feelings, let alone examine these feeling- it was just coming out as pure rage.

In a bit of a risk as a therapist, I began to improvise a blues song over a blues pattern I played on the guitar, using the words and phrases Jake was yelling. At first he gave me an angry look, then a small smile came, then he laughed, and then the tears came. He said, “boy I know more about the blues than almost anyone my age in the whole world.” We started to write down the song and Jake was able to make changes to lyrics and guide the music. After a while he was talking about his feelings. He said, “I feel sad, but it just comes out as mad”. Over the course of 3-4 sessions we wrote his “Blues Song”. The end result wasn’t so important as the fact that he was able to express his feelings of anger and his grief in a way that didn’t involve breaking televisions. He was able to take these feelings, give them structure, and deal with them.
After his mom died, Jake wouldn’t talk to anyone about his feelings. His grandmother described him as “angry all the time”. For several sessions after the death, Jake refused to talk to me about his mom’s death. Instead, we ended up making music with keyboards and drums. This seemed to engender more trust even though it didn’t initially seem things were progressing. One day I entered the house with only a drum. He was arguing with his grandmother when I arrived. The three of us started talking about the anger. He said, “Sometimes I get so mad I just want to break something” I asked Jake how he would tell the drum how he feels. I gave him the mallet and he said, “What do I do?” I said, “Show the drum how you feel”. He warned, “I might break it.” I said, “I have more drums”. This model of Remo drum is almost indestructible- almost. I suggested he say something he was mad about and then hit the drum to show the feeling.
He wound up- “I’m mad because my mom died”. I held the drum far from me as he hit it very hard. “I’m mad because my dad left me” ---BOOM went the drum. “I’m mad because I’m all alone in the world” ---BOOM! “I’m mad at my friends for picking on me for being poor” --- BOOM! He went through a long list as my arm grew tired and my drum started coming apart. Then he ended by saying, “I’m mad at my mom” --- BOOM! “I’m mad at her leaving me”--- BOOM! “I’m mad at God for taking her away from me and making my life so hard”--- CRACK went the drumhead with the final swing. Then tears came again. We talked about letting feelings go instead of hiding them and that it was alright to feel sad, confused, or angry.
His overall anger at school and home was better after that point. We continue to meet from time to time and he is now open with his feelings. Jake faces many challenges in his life and has faced a lot of pain. This is the beginning of a very long healing process for him, but music therapy helped him get it started.

Here’s Jake's blues song:

Everybody’s, everybody’s got the blues
I said, Everybody’s, everybody’s got the blues
I’m gonna lay down on the ground, lay right down and die

Even though I got the blues, I know my life’s been good.
Even though I got the blues, I know my life’s been good.
If you’ve never met the blues, someday you’ll get the blues too

My family’s gone away, so now I’m all alone
My family’s gone away, so now I’m all alone
So all I want is something that will make me happy

My pappy never let me play, and so he went away
My pappy never let me play, and then he went away
Now I only see him on some certain days

*My mom got sick and died, so now I’m mad and cry
My mom got sick and died, so all I do is cry
All I want to know is why, why, why?

When you’ve got the blues, you don’t know when it will go away
When you’ve got the blues, you don’t know when it will go away
Even though I’m sad I hope it will be gone some day.

Even though I got the blues, I know my life’s been good.
Even though I got the blues, one day my life will be good.

*verse written after mom’s death, the rest of the song was written before mom’s death.

Tuesday, December 7, 2010

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."

Wednesday, November 24, 2010

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.

Saturday, November 20, 2010

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.

Monday, November 15, 2010

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.

Sunday, November 14, 2010

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.