MCSMN Blog

January 4, 2019

Threads of Connection – Experts by Experience

By Amy Camie

Everything we do creates energetic, invisible links joining us together–threads of connection. Be it a smile, a gentle touch, or a grumpy mood, our feelings affect those around us.  And whether you’re a medical professional, service provider, patient, or caregiver, you have the power to transform any health care encounter into one of comfortable, compassionate care.

For years I played harp in hospital waiting rooms, patient rooms, and chemotherapy infusion units to help ease anxiety, lull patients to sleep, and provide a gentle distraction from ongoing treatments. There were times, in the infusion units, when I remember thinking, “How could they just sit there and allow that poison to be pumped into their bodies?” I had no personal experience with chemotherapy, and could only imagine how I would react in the same situation. Recognizing that my personal assumptions were not supportive to the space, I’d take a deep breath, re-center myself, focus on the love I was sharing through music, and continue playing.

Several years later, I experienced two separate breast cancer diagnoses and my judgments from the past quickly dissolved. As I made choices that were previously unimaginable, a deep feeling of empathy emerged for those patients who had once enjoyed my music. My old beliefs and perceptions started to crumble with the awakening of new inner strength and self-compassion. The energetic threads of connection from those surrounding me offered comfort and support when my body, mind, and spirit felt like porous sponges after treatments. Every day was a different experience – “normal” did not exist as I learned to dance with all the details: appointments, tests, new medications, and side effects from treatments.

These insights from my two journeys with breast cancer supported my recent role as a patient advocate and co-caregiver for my mom when my father had complications after open heart surgery. During his first nine days in ICU, my siblings and I were extra attentive to our mom’s emotional state. In preparation for what we knew would be a long journey ahead, we all agreed to help each other remember basic self-care needs to maintain some consistency–drink water, go to the cafeteria for one warm meal a day, keep an extra book or magazine handy, create group texts so friends and family can be updated, encourage as much sleep as possible. Dad’s medical team took extra time to explain how they were treating each number on his monitors. It may seem trivial, but understanding how his cardiac index was directly related to his hydration levels felt empowering and offered us a purposeful way to focus our energy.

For the most part, those caring for my father brought us a sense of peace with their focused confidence, patience, and precision; each person became an individual thread, weaving their unique role into our family’s blanket of experience.

One nurse, a self-proclaimed ADD sufferer, blew into my father’s room one night like a tornado. She spewed unwanted comments and frenetic energy all over our soft sacred space. Although she was very competent, her unintentional jokes about not knowing what to do next with my father’s medications triggered feelings of panic in our exhausted mother. When I spoke up and asked the nurse to please be more aware of how her words and actions were affecting all of us, she looked surprised and apologized. From that moment on she was more considerate and calmer.

My message to healthcare professionals is this: Treating patients is your daily routine. Please walk gently, speak softly, and be patient with us as we navigate our new experiences. The value of being aware of the energetic threads of connection with those around us is simply to become more conscious of how we choose to be in relationship with each other; a choice that can turn a frightening experience into one of compassionate care.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author:  Amy Camie is a professional harpist, recording artist, composer, public speaker, and author of “Loving Life…All of It – A Walk with Cancer, Compassion, and Consciousness.” Her solo harp CDs have been used in several pilot studies indicating how they increase neurological functioning, support the immune system and reduce pain, distress and anxiety levels. Her Facebook page, https://www.facebook.com/AmyCamieHarpist/ includes many videos and inspirational posts. For more information, visit www.AmyCamie.com or find her on Twitter at @AmyCamieHarp.

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An inside look at the harrowing journey of breast cancer: #BreastCancer
'Normal' no longer exists when you're battling breast cancer. #BreastCancer
Via @MayoClinic: An inside look at the harrowing journey of breast cancer: #MayoClinic #BreastCancer


Tags: Experts by Experience, Patient Experience

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