The End is Near?


Sustaining Long Term Work with Persons Who Have Degenerative Conditions

I walk into Leah’s room for the second time this week.  She is positioned on her side with an oxygen mask askew over her face.  She is curled up in the fetal position, knees into her chest.  Her eyes are partially open, not really seeing.  She is covered with a weighted blanket, an attempt to slow/stop her almost constant jerking movements.  In summary, Leah appears to be exactly the same as I left her just two days earlier.  For the most part, this is how Leah has looked for the past three years.

I know this wasn’t always Leah’s existence.  She was a precocious and playful preschooler who loved books, monkeys, singing and dancing.  Over the course of a week, a rapidly degenerative condition took hold thanks to a previously undiagnosed white matter degenerative neurological disease.  I never knew the bubbly preschooler, although I work twice a week surrounded by her photographs and belongings.  Leah lives with us now.  Her parents visit as much as possible (typically once a week).  As often happens long term care, we have become her extended family.

But this is not about Leah’s story.  What most intrigues me about working with Leah is how I am able to sustain this work.  Often when I step into the end of a journey, the mission feels somewhat clear: walk with this family through the end of their child’s life.  While this is still the goal with Leah, the path has been much longer.  Leah came to us for “end-of-life care”.  That was three years ago.  She continues to grow, requiring new clothes and shoes.  What first felt like a clear, end-of-life story has become an extremely prolonged course.  Yet, creating music with Leah two times each week has become one of the most creative and rich musical moments of my week.

The musical content of each session continues to grow and change, a fact that I realize is in direct contrast to Leah’s condition.  Where does the music come from?  Sure, technically I am matching her breathing, creating melodic contours based on her body posture and facial affect.  But, where does the music actually come from?  I leave the room each session feeling as though our interactions together have manifested themselves through an incredibly rich music experience.  I wish that this post is going to end with some magic answer or realization, but the truth is that I have been pondering this over and over in my head and in my supervision for the past three years.

The obvious answer for me is to look at my own countertransference.  Working surrounding by photos of the energetic, sweet, charismatic child that once lived in this body, I often wonder the effect those have on my commitment to Leah.  In the many conversations that I have had with Leah’s mother, I see much of my own maternal instincts in her commitment to Leah and view of Leah’s life as a whole.  Do I find myself immersed in this music as a way to hold this space for Leah’s mother when she is not present?  Perhaps there is just something about Leah that I will never be able to explain.  I have repeatedly felt myself feeling as though she is an “old soul”, wise beyond her years.  None of these have any basis except for my own intuition.  Whatever the origin, my countertransference has been a strong tool in sustaining this work.

When I speak with my interns, they often seem fearful of their countertransference.  As they become aware of their own thoughts and feelings, they often are quick to try and figure out a way to remove those from the work.  I argue that, not only is it impossible to remove your own countertransference, but it would be detrimental to the work.  The caveat is awareness.  Are you aware of your own thoughts, feelings, responses, biases, etc.?  I don’t just mean that you have the knowledge that they exist, but have you really delved into the significance of each one and how each might affect your relationship with your client?  This is harder than it seems.  I have come to a place where I feel comfortable with using the material that I described above in the work with Leah after my own extensive work in supervision.  As a result, I feel as though my countertransference material is the fuel that continues this extended journey with Leah.

I know that one day Leah will die.  I may or may not be there.  The thing about long-term work is how much a part of your existence a client becomes.  I feel that I have been ready for this day for a long time.  At the same time, I have come to rely on the fact that Leah will be there when I come into work.  The quest for self-understanding, processing and integration is life-long.  I feel lucky in many ways that I have developed an appreciation for the intersection of our lives long before Leah’s death.  I believe that, when the day comes, I will bow my head to her and thank her for the music.

Image courtesy of dan/

1 thought on “The End is Near?”

  1. This is a beautifully moving account, Kristen. I sincerely appreciate the honesty, forthrightness, and courage it likely took to write it. You’ve emphasized so thoughtfully how music therapy cannot be reduced to a set of technical interventions, but is, at its heart, a way of being with our clients as the basis for addressing their needs. Thank you for your generosity and care in sharing this, and for your ongoing, vital service to the community.

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