“I am gone now, but I am still very near.
Death can never separate us.
Each time you feel a gentle breeze,
It’s my hand caressing your face.
Each time the wind blows,
It carries my voice whispering your name.
When the wind blows your hair ever so slightly,
Think of it as me pushing a few stray hairs back in place.
When you feel a few raindrops fall on your face,
It’s me placing soft kisses.
At night look up in the sky and see the stars shining so brightly.
I’m one of those stars and I’m winking at you and smiling with delight.
For never forget you’re the apple of my eye.”
-Mary M. Green
Grief has a way of working its way into deep folds and crevices that weren’t consciously recognized and finding its way back out in unexpected moments. A song, a smell, or taste can suddenly bring tears to my eyes and make me more aware of the empty space that loss has left behind. When memories well up it can be comforting and warm or it can feel like a heavy fog settling across my heart and seeping into my veins.
Time makes the pain less acute and the fog less intense. Time also makes me realize that I am forever changed by these losses and also by the beauty of having known and loved those who are no longer present.
Grief has made me search, run, wander, flounder, reach out, collapse inward, yell, fall to my knees, and search for meaning. It’s caused me to move forward in ways I wasn’t expecting, to become a better version of myself, to reach out in search of connection, to let go of connections that were once important and it’s caused me to hold on too tightly. When we lose someone we love it can cause ripples across our whole lives and being. The following story is my experience of one of the losses I've experienced and the way it has impacted how I live my life.
I wrote the following piece as part of my culminating MFA Portfolio for Goddard College a little over a year ago. Names have been changed in order to protect individual privacy.
In early November of 2011, I drove to Mass General Hospital, while my friend Jon was having emergency brain surgery to address the tumor they’d found the day before. Jon, the husband of my best friend Amy, was in his early 30's when they found the tumor. Amy was in her late 20's. Their daughter was just 6 months old.
Sitting with Amy, I learned with her that Jon’s tumor was a rare form of cancer, close to Jon’s brainstem and in both hemispheres. The doctors didn’t know exactly how to treat Jon’s cancer. In an effort to save him they were aggressive in the surgery. When Jon awoke he had severe aphasia. He couldn’t move the right side of his body. He didn’t remember Amy’s name. He didn’t remember his daughter.
Being present for Jon and Amy during this time, the focus and priorities of my life and practice began to change. A little over a month later, in late March of 2012, I ended up sitting in the same surgical waiting room where I had sat during Jon’s surgery, while my mother underwent a challenging (and ultimately, life-threatening) surgery on her neck. After a week in the hospital my mother turned the corner toward health and began to recover. Suddenly, illness and hospital waiting rooms became ever present in my life.
Jon was a fighter and his recovery from this surgery only demonstrated that further. The doctors said he wouldn’t walk again but he did. He fought to get his speech back and his strength back, all the while surrounded by the powerful love of his wife, their six month old baby, her loving family, his son and friends that had become his family over the years.
Jon never regained full function cognitively or physically. When Jon was released from rehab and strong enough, he began radiation treatment. Jon responded well to his first round of radiation but the tumor was never going to be “cured”.
In December of 2012, Jon’s health went downhill quickly. Jon was admitted back into the hospital. At this point it became clear that Jon didn’t have much time left. Jon hadn’t known that he was dying until this hospital admission. Hospice services were called in and Jon was sent home from the hospital without further treatment once he was stabilized.
In late December of 2012, I went to visit Jon and Amy. I saw this visit as my opportunity to say goodbye. Jon was no longer able to walk and he was having trouble eating and keeping food down. He was sleeping most of the time and not fully present. I was able to talk with him briefly before he got too tired. He stopped eating and drinking water that day and the next day he lost consciousness.
In early January of 2013 I went to stay with Amy and be present for Jon in the final stages of his life. The following afternoon, I sat at Jon’s bedside and read him the story The Fall of Freddie the Leaf. He was unconscious but I believe he was aware of my presence. Late that evening, Jon took his last breath, surrounded by the love of his wife, his mother-in-law, me and two other close friends.
I had never seen a dead body before. This wasn’t what I expected. It wasn’t frightening. Jon was finally at peace for the first time in over a year. He simply wasn’t there in spirit anymore. It wasn’t as though he was sleeping, he was physically present but his energy was gone. Somehow, I felt a deep sense of relief. He was no longer in pain or fighting a losing battle. It was over.
When the cremation services representative arrived we all went to say one last goodbye to Jon’s physical body. I helped carry Jon’s body out of the house. I remember carefully zipping the body bag up to his face. Someone else zipped it the rest of the way.
This experience has caused deep and lasting effects and shifts in my life and in my priorities. Many of which I am still digesting. One of these shifts is that I am exploring the themes of health, aging, caretaking and dignity in my own life and artistic practice.
When people close to me have become sick I've noticed that some people often don’t hear – or really listen – to what they have to say. Friends might nod and smile instead of actively listening. Frequently, the individual has something relevant to say but it takes a little work and listening to figure out what. Many people don’t take the time to figure it out. I think that too often when someone is sick or in a late stage of life they go unheard – and often they have so much to say. This has made me realize the importance of individual’s stories. I’m drawn to oral history work as a way to uncover and tell these stories in a way that honors the individual.
When it became clear that Jon’s illness was terminal, I decided to take a Hospice Volunteer training in order to be able to support my friends and deal with my own grief. I wanted to be fully present and be informed. When I took the training I was not planning to actively volunteer, I was instead hoping to gain some tools that I could utilize in a traumatic situation. After Jon passed, I decided to become an active volunteer. In part, this decision to volunteer was based on a need to process Jon’s death and was also based on a want to help others through end of life and through the loss of a loved one.
In the volunteer training I learned how to listen deeply and authentically and how to engage people in conversations around their stories, including stories of mortality. I was encouraged to do oral history work with the people I work with, as that is meaningful to them and to their families and gives the family something to hold onto once the individual is gone.
I recently volunteered with a hospice patient who was in her early 90’s. I visited her twice a week to help with light housekeeping tasks and to provide companionship. Frequently during my visits we simply sat together watching T.V., though sometimes we engaged in deep conversations about life, family and death. In one of my visits I saw that she was reading a book called Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying. I had heard about this book within hospice volunteer training and asked about it. This opened a door for talking deeply about her emotions related to the end of life. She asked me “did you know that I am dying?” I replied that I did know. I left room for her to speak in whatever way was comfortable for her but didn’t push. If I hadn’t been trained as a hospice volunteer, I don’t believe I would have known how to respond to this. Hospice Volunteer training provided me the knowledge that I could leave some open space so that she could talk freely about this final stage in her life. It was a powerful conversation that provided me with perspective into her view of the end of her own life.
To me, being a Hospice volunteer means that death is always nearby. It opens doors to conversations about death, dying, loss and end of life. It also means learning how to let go and being present to death. Being with someone who is dying had the effect of reminding me that nothing is permanent. It has shifted my perspective and it has made me further consider what happens after death and how the loss of a loved one changes individuals.
This work has made me a more spiritual person, has impacted the work I make as a choreographer and has impacted the way that I live my life. For me, being close to someone who is dying is a lesson in letting go and saying goodbye. Death is a fact of life, though not an easy one for those who are left behind after someone they loved passes.