When I was twenty-two, my grandmother, Katy, became seriously ill with pulmonary fibrosis. My grandmother was a remarkable, gorgeous, six-foot tall woman. I had always called her by her first name. Katy lived in a beautiful house in upstate New York – a house that she and her late husband, my grandfather, had designed and built together. My grandfather had been a painter, and he had died at home, surrounded by his paintings and his family. Katy wanted to do the same. She enrolled in hospice and I moved in with her. She was bedridden, but the nurses and aides showed me how to take care of her. I learned how to keep track of her symptoms, give her medication, operate her nebulizer, and change and bathe her. Katy wasn’t afraid of death; she was curious about it. She taught me that the process of dying can be joyful, profound and even magical. Like birth, it is natural and ancient, but also full of discovery. There are moments when it’s funny. The experience made me look at strangers with gratitude and compassion. It made me love and appreciate the human body. Helping Katy to “die well” felt sacred and extraordinary.
After Katy died, I felt different, and yet I returned to my previous life. Time passed. I worked. I moved to Seattle. I got married. All throughout that time, I held that experience with Katy close, and I thought about it a lot. I thought about illness and how lonely it can be. I thought about how our culture hides people away when they are fragile and most need connection – and when they have so much they can teach us. I thought about the hospice workers who had visited Katy, how kind and connected they were, and how lucky they were to be doing something so deeply meaningful. I thought how reciprocal caregiving is; how giving to Katy gave back to me.
It took me years to figure out how to actualize these ideas and feelings, but finally, in my thirties, I trained to be an end-of-life doula. An end-of-life doula is a non-medical professional who provides holistic (physical, emotional, and spiritual) support at the end of life. Once trained, I began volunteering in the hospice wing of a skilled nursing facility in Seattle. I have learned so many important things from my patients, but one of the biggest lessons has been how powerful touch can be. Many patients asked me for hugs, or to simply put my hands on them: to touch their hands, their legs, the backs of their necks, their heads. It is such a basic way for humans to connect. I have seen it soothe patients and reconnect them to their bodies in a positive way, even through times of pain.
I saw this most strikingly with a man I’ll call Howard. Howard was a 77-year-old poet with a twinkle in his eye and a wicked sense of humor. We became great friends. Howard had multiple myeloma, a rare and particularly horrible form of cancer. Cancer cells were accumulating within his bone marrow and forming tumors inside his bones. His body was tight and twisted and he was often in enormous pain. He was shrinking; his spinal vertebrae had collapsed, and his back had become severely hunched and contracted. It was difficult for him to find a comfortable position in bed. Sometimes, when his pain was especially bad, he would close his eyes and I would gently rub his hands and feet. My touch was very cautious and slow, but I let my hands be intuitive, and after a few moments, I could feel his body relax slightly. His breathing changed and his face softened. It was a relief to help him just a little bit. As Howard got closer to the end of his life, I spent a lot of time stroking his hands and his feet. He would ask me to brush his hair because he liked the feeling on his scalp. Sometimes he fell asleep. I was moved by how deeply touch affected him. I thought about Katy, and how she would lie on her side so that I could rub her back.
I started reading about how massage therapy has helped hospice patients. I learned about Irene Smith, and the work she has done over the past thirty years as a hospice massage therapist. I also learned about Tracy Walton and her work with oncology massage. I realized I could do so much more for patients if I were an LMT. I could help relieve pain, anxiety, and nausea. I could work with people undergoing treatment. I could work with caregivers. Most of all, I could touch people who very badly need to be touched. I could reconnect them with their own bodies and help them feel a little less alone. I could give the gift of pleasure at a time when pleasure is hard to find.
The last time I saw Howard, I stroked his hands and brushed his hair. We both knew he would die soon. I cried a bit as we talked, but he was ready to go and actually quite cheerful. We thanked each other, wished each other well on our travels, and said our goodbyes. Howard died on August 26th, 2018. I noticed the moon that night: almost full and incredibly bright.
A few months later, my husband and I moved back to New York and I enrolled at the Center for Natural Wellness School of Massage. As I write this, my first day of classes is a week away. I can barely wait.
I am training to be a massage therapist so that I can provide skillful, healing, meaningful touch to people like Katy and Howard. Beyond the essential foundation of massage training, I also plan to study oncology massage, palliative massage, lymphatic drainage, and hospice massage. Once I have my massage therapy license, I hope to work with hospice patients a couple days a week, and to also start my own private practice, where I can offer massage to people in my community, with a special emphasis on elderly and critically ill populations and caregivers.
In an increasingly isolated world, touch feels deeply important – almost revolutionary. My hands and heart are ready for that revolution. Sign me up!
