Quentin Crisp said, "Health consists of having the same diseases as one's neighbors." I have always thought that was a good explanation for why support groups work.
When Tom Blakney's wife Kay was diagnosed with multiple myeloma in 1997 in Seattle, WA, they attended the first meeting of a fledgling myeloma support group with five other families. A month after the group was formed, its leader, Ray Larsen, passed away. Tom volunteered to step in and lead the group.
Tom and Kay saw the value of a disease-specific support group though they had never participated in one before. They moved the support group to their church, Aldersgate United Methodist Church in Bellevue, where it continues to this day.
Kay had a cousin, Mary, who was also an important part of their support system. Mary often provided care for her cousin in the form of emails, lunches, walks and companionship. When Mary's husband passed away suddenly in a tragic car accident, their roles were reversed and Tom and Kay began to provide care and support for Mary.
In 1999, Kay lost her battle with multiple myeloma. Tom's orbit stayed with MM and the support group they had nurtured.
Tom and Mary fell in love and married, with the strong feeling that the hand of God--and the blessings of their spouses--were directing and embracing this union.
Tom and Mary continue to run the Seattle MM support group, The MM FIGHTERS! Tom refers to it as their "mission project." Because of their history as both "caregivers" and "cared for," caregivers have a special presence in the Seattle group. As Tom noted, "The quietest person in the room is often the caregiver to a newly diagnosed person," and they are often the ones most in need of empowerment. To address this, the caregivers and patients are split into two groups every other month. Many of the "seasoned" caregivers are savvy and up-to-date on MM, and they have a lot to share. Mary leads the caregivers' sessions, while Tom leads the patients' sessions.
After hearing about this, we tried that same splitting of caregivers and patients in our local Portland Oregon MM Support Group meeting last month. I think both groups were enriched by the depth of the communication that happened in each group. There are some topics that a caregiver can't talk about in a room with MM patients in it, and topics that are equally challenging for a patient to say to anyone but another MM patient.
The MM FIGHTERS! Support Group in Seattle is now about 200 families strong, mostly served by an active email/internet connection by Tom and Mary Blakney. The monthly meetings are attended by 30-45 patients and caregivers. The Washington MM community is thriving because of their unique partnership and commitment.
Caregiver stories fascinate me. Passion and survival are incredible forces. The journeys tend to have a much more powerful trajectory than would ever be imagined going in, and a great amount of energy. I suspect that many of the myeloma support groups have an interesting and inspiring history. How did yours start?