Ten years ago, my doctor told me a local chapter of the DMDA
was going to meet in September and gave me a brochure. I remember the moment clearly. My
response was "Hallelujah." I met with about forty others that first night. I had
been waiting for this for a long time.
I was not disappointed. The meetings were well attended.
People volunteered to plan programs. There was a distinguished doctor from Strong Hospital
as a consultant. There was also a phone list. My doctor asks me from time to time how the
group is coming along. He may be surprised that this group has not only continued to
function, but also has continued to grow and attract members. My hopes were realized.
I had been looking without success for many years for one
person to share his or her experience of bipolar disorder with me and now I had the names
of fifty people who had some first-hand experience. For a couple of years, I just marveled
at this dream come true.
People got to know each other. They came when they could. We
shared different perspectives and backgrounds. It began as a loosely organized group that
served the needs of people who, for the most part, do not thrive on high pressure
situations and like a structure that leaves room for creativity and fosters empathy. The
people who continue to be attracted add their strength to the group bringing more depth
and diversity. Most important of all I have seen how a person is encouraged by sharing his
story with others who have had similar feelings.
At the last meeting, a woman attending for the first time
told us that after her recent diagnosis, her husband had been very interested in finding
information about the disorder for her. However, she said tearfully that now that she was
getting better, he would tell her that perhaps soon, she would be able to get off her
medication. She tried to explain that it was like taking the medicine he takes for high
blood pressure. He would have to take it for the rest of his life just as she would. She
was sad that he didn’t yet want to accept that yet. Probably part of it was that she
had the same wish.
Today we meet four times a month including a group for family
and friends, attend conferences, sit on local committees in the field of mental health and
are affiliated with the Mental Health Association. Over the years, we have had four
consultants attend meetings who have been residents in psychiatry at the University of
Rochester. We research new subjects. People have reached out to others on the phone and
planned outings together and visited people in the hospital. There has been talk of
starting of a business. A support network has definitely evolved. That to me is the basic
purpose of the chapter.
We have taken a step my doctor did not foresee fifteen years
ago. People with mood swings can get together and use our combined strengths to sustain a
support group. Stepping forward takes courage. For every one of us who has picked up the
phone or signed in at a meeting, there are more people still at home holding on to their
comfortable privacy. There are many more who do not even know that they share a disorder
that can be treated so there is great probability that their quality of life can be
improved.
I recently attended the national conference of DMDA in Boston
along with another member of our group. As part of a Chapter Leadership Forum, we were
trained as facilitators and are holding a facilitator training session for members of our
group who want to step into that role. We met, traded newsletters and ideas with members
of other chapters from all over the country and heard professional speakers and panelists
discuss current research, effective treatment and paths to recovery. It was an incredible
experience. The doctors, some of the foremost in the country seemed warm and humble. We
had time for questions and they listened to us attentively. We learned how to be better
advocates for ourselves. We heard a moving address by Maurice Benard, a well known soap
opera actor appearing in General Hospital, who told his story of living with this
affective disorder. We listened to Surgeon General David Satcher who recently published
"Mental Health: A Report of the Surgeon General," which is the first Surgeon
General's Report on Mental Health. He only accepts 3 percent of requests to speak. In his
report, he asserts that mental illness is a critical public health problem that must be
addressed by the nation. I plan to write more about my experience and what we learned at
this conference in the next issue of this journal.
If you would like more information about this group or one in
your area, please e-mail me at or send a letter to me in care of Mental Health World
to the Independent Living Center, 3108 Main Street, Buffalo, NY 14214.
