The sudden halt of my activities was a harsh blow. I had always been active and independent and the loss of my mobility was a bitter pill to swallow. I missed traveling the world; my IPhone became my magic carpet to exotic places while lying in the hospital bed. I miss teaching my classes, the sense of fulfillment it gave me and the connection I had with my students. I missed the tranquility of my meditation sessions, the energy of my qigong practice and the intellectual stimulation of my feng shui group consultations.
The year 2017 was a blur of hospital visits, months of an ongoing clinical trial and meetings with specialists. I was in a constant state of exhaustion, both physically and emotionally. The pain was unbearable at times and the side effects of the treatments were debilitating. I felt like I was in a never-ending cycle of discomfort, with no end in sight.
I was also overwhelmed by the complexity of my disease. I did not want to delve into the details, to understand the intricacies of my condition. I was scared of what I might find, of the grim prognosis that might await me. I chose to focus on getting through each day, on surviving the ordeal that was my life.
Looking back, I realize that this was my way of coping with the situation. I was in survival mode, doing whatever it took to get through each day. It was an extremely difficult time.
The decision to join a support group was not an easy one. I was still grappling with the reality of my condition, mourning the loss of my life I once knew. However, as the months passed, I realized that I needed to connect with others who were going through the same troubles. In October 2018, eighteen months after my diagnosis, I gathered the courage to attend my first group meeting. I remember feeling a mix of apprehension and hope as I made my way to CancerCare located on Seventh Avenue in Chelsea, NY. I was grateful for the assistance of my home health aide, who helped me with my wheelchair navigate the few blocks from my apartment to their offices.
It was the beginning of a new chapter in my life, one filled with shared memories and newfound friendships. It was a step towards acceptance and healing and I am grateful for the determination it took to take that step. The first meeting was a whirlwind of emotions. I was nervous, unsure of what to expect. But as I listened to the stories of others, I began to feel a sense of connection and community. Here were people who understood what I was going through. I was not alone.
Over time, this special group became my salvation for me. It was a place where I could express my fears and frustrations without judgment, where I could find comfort and compassion. The group members became my second family, offering me a foothold when I needed it most. I also found strength to introduce my own personal story. It was therapeutic to talk about my journey, to share my pains and triumphs. I found that by telling my history, I was able to help others who were going through similar struggles. It gave me a sense of purpose, a feeling that I was making a difference.
I believe that a good facilitator is key to the success of any support group. They set the tone for the group, ensuring that everyone feels heard and valued. They promote meaningful discussions, help manage group dynamics, and provide an emotional base. They also play a crucial role in providing information and resources, helping group members make informed decisions about their health and wellbeing.
One of my favorite group leaders was Rick who had the unique ability to create a safe and welcoming environment, where everyone felt comfortable sharing their vulnerable moments. He was empathetic and understanding, always listening attentively and offering words of inspiration. He had a knack for asking the right questions, prompting us to delve deeper into our feelings and confessions. His guidance was instrumental in helping us navigate our emotions and find solace in each other’s stories.
Unfortunately, not all groups have competent facilitators. I have attended a few where the social worker seemed unprepared or indifferent, which made it difficult for me to connect with the group. These sessions made me appreciate Rick even more and I am grateful for his guidance. I would reassure anyone seeking a support group to look for one with a skilled facilitator. It can make a significant difference in your experience and can greatly enhance the benefits you receive from the group.
At the beginning of the pandemic, I began to host a group called the Bells of Hope. After three and a half years, this very heartfelt family has been a lifeline for me. We have shared laughter and tears, triumphs and setbacks and through it all, we have grown stronger together. We have learned to lean on each other, to draw fortitude from our shared sagas. The lighthouse has become our symbol of being the beacon of light radiating our wisdom and courage amid the turbulent waters of our environment, politics, wars as well as cancer. We continually strive to remain grounded with our feet on the solid earth surrounded by calm waters.
As I continue on this adventure, I am reminded of a quote from the Chinese philosopher Lao Tzu: “A journey of a thousand miles begins with a single step.” Each day, I take another step on this road, guided by the wisdom of those who have walked this path before me and inspired by the hope of a brighter future.
In retrospect, I am grateful for the support and friendships that I found in these groups. It helped me navigate the challenges of living with multiple myeloma and it gave me a sense of community and belonging. It provided me with valuable resources about nutrition, side effects, new treatments and therapies, about ways to manage symptoms and improve my quality of life. I was able to ask questions and get answers from people who had been through the same things. Support groups offer me the strength and resilience to help myself and others.
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