Over the past two years I have had the privilege of working with adults living with Sickle Cell Disease in the Philadelphia area. This journey has brought many gifts with it, not the least of which has been conducting Mind Body Skills Groups.
What has been most striking to me has been the focus, interest, delight and joy in these groups during the first two sessions, when we introduce the Group Guidelines and then review them again at the beginning of the second session. Our guidelines of Confidentiality; Mutual Respect; “I Pass” Rule; Punctuality; Commitment; and Home Practice go beyond laying the foundation for the creation of a safe space but, as one of the participants declared, “These are the agreements that have been missing from every aspect of my life.”
In this particular group it was very interesting to watch what happened as week after week the participants wanted to hear the Group Guidelines time and time again. One member shared that it was a great comfort to be someplace where one could learn guidelines and conduct themselves accordingly. It became his personal practice to say each aspect of the guidelines quietly to himself during our opening meditation with ‘soft belly’ breathing. This patient had a very active disease profile and experienced 6-7 acute pain crisis per year that required hospitalization.
He described that during a crisis he felt ‘dehumanized’ and as much victimized by the medical treatment as he was relieved by it. He often felt that he was an object in the hospital to be poked and prodded, displayed on hospital teaching rounds to Residents and Medical Students, referred to as ‘the Sickler’ and not by his given name; and ashamed and embarrassed that his pain could only be quelled with mind-numbing opiates.
Participating in our Mind Body Medicine group was an entirely new experience for this young man, as was feeling safe in a group. For the first time he shared his feelings regarding what it was like to grow up in the shadow of death after being told at the age of 6 that he would never live to be an old man; maybe not even live to be a teenager. For him, this became a self- fulfilling prophecy of failure as his emotional pendulum swung back and forth between despair and defeat. To protect himself, he developed a ‘why bother ‘ attitude that led to just getting by in school, fear of finishing or committing to anything, and falling far short of his potential.
He accompanied a friend in crisis with Sickle Cell Disease to a local Emergency Room and, on behalf of his friend, he asked the doctors, nurses, and hospital staff to grant: confidentiality, mutual respect, I Pass or no thank you, punctuality, and commitment to his friend as both a patient and a human being. When he came back to group the next time he shared this story with us during his check in, and now he is considering exploring a career in patient advocacy.