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The History of QT Boston / OAB Series - “ In their own words”
CHAPTER I - In the Beginning – to 1982
The Ostomy Association of Boston began in Cambridge at 12 Mason Street in Edith Lenneberg’s living room. In October 1952, nine young women who had had a relatively new surgical procedure met to help each other learn to live again. We now call these women “The Founders.” But let’s let Edith Lenneberg tell us in her own words how the Association was born.
“After I had had ulcerative colitis for ten years, I had a colectomy in March of 1952. My acceptance of the fact that I had needed surgery had not been particularly graceful. My gastroenterologist, Dr. Richard Warren, invited a young woman to meet with me at his office at Mass. General. She had had an ileostomy for about a year, and he felt that talking with her before my surgery would help my decision-making. He told me that such conversations were not uncommon and that recent and future ileostomates met together informally to help each other. (He didn't mention any “official” group.) I accepted his offer and visited for about an hour with a young woman named Jane Wagstaff. She seemed to be leading a normal life, with a husband and a job. I felt hers was a very convincing presentation. I decided to go ahead as soon as possible: I had a little daughter and felt my personal health hurdles impeded my care of her.
“There were some complications after surgery, and I had to return to the hospital several times. As I walked into the waiting room on one visit, there waited also another young woman whom I soon discovered had had surgery just a week after I had . . . but who was far behind in convalescence. We exchanged histories and stories. This was my second conversation with someone who had an ileostomy but who also had little post-operative information.
“After I returned home and weeks later had more or less recovered, my gastroenterologist told me about yet another young woman, Dottie Lourie, who had had an ilieostomy for several years. I called her. We talked about stoma management which for both of us had become a serious problem: We had little equipment and little counsel. After about an hour, I told how I was finding so much help and encouragement from simply talking. I suggested that we get together in person and exchange more ideas and techniques. I also mentioned that I had been invited by my surgeon, Dr. Richard Warren, to attend an out-patient clinic at MGH. Dr. Warren had explained that new ostomates occasionally gathered to assess equipment and to share experiences. I promised Dottie that, if I discovered new equipment or maintenance hints, I'd share them with her.
“I went to the meeting. I met nine professionals . . . but a mere three patients. We felt a bit outnumbered and intimidated. On a table were assorted appliances and care equipment, a display that at one time showed me more equipment than I had seen in all the months since my surgery.
“After the clinic, Dr. Warren asked me if I had learned anything. I replied sheepishly that really I had enjoyed talking with the other patients living with my same challenges more than I had handling rubber and plastic. I told him we minority four were planning to get together again. He was not at all surprised and asked his secretary to give me the names of all patients who came to the clinic or who in any way were associated with it. 'You can invite whomever you want,' he encouraged with a smile.
“Feeling at the time that I was dealing with a very personal issue, I selected only young women to contact. Dottie and I scheduled an initial meeting at my home in October of 1953. There were nine of us: Mary Anshus, Elizabeth Coburn, Gertrude Fallon, Sylvia Kirshen, Rose Kusinitz, Ruth Mann, Mona Radonsky, and, of course, Dottie and me.
“It turned out to be an inspiring and uplifting time. We learned that none of us was alone and that there was so much more that each of us could do to help one another. We could pick up the phone and ask candidly, 'Has this happened to you? What did you do? Did it help?' From that moment, I knew that all of us must help one another facing the same situations and the same problems to solve.
“A month later (November 1953), I read a letter in The New England Journal of Medicine from a Doctor Lyons who said that in New York City there were a number of post-operative ileostomy patients who met together at Mt. Sinai Hospital. They quite serendipitously had met in the hospital, talked, and continued to meet after their discharges. They had been doing so for about a year. Dr Lyons went on to comment on how these meetings proved to be marvelous rehabilitative therapy.
“We here in the Boston area were most pleased and immediately wrote to Dr. Lyons to invite him to visit. He visited in January of 1953 and stated that what we had already started was the most important thing, physically and emotionally, that we could do. He declared that out-reach could be the centerpiece of our activities. 'Just by walking through the door,' he said, 'you have launched the patient toward recovery.' He explained how the Mt. Sinai group was doing essentially what we were doing. The New Yorkers called themselves the 'Q /T Group' because the women had been in Ward 'Q ' and the men in Ward 'T ' ---and none of them wanted to be 'Quiet,' in other words, on the 'Q /T ' any longer!
“Dr. Lyons recently remembered that, 'Yes, I was invited to attend a meeting in Boston. Edith Lenneberg had assembled a group in someone's home, coffee cake and all, and they asked for advice. I had been struck by the presence of only females and asked why. They responded that they knew sexual matters would come up, as well as other intimate feminine situations. How could you discuss those with males? I recounted what our experiences had been in New York and how well all group members worked together.'
“The Boston group of women started corresponding with the New York 'Q/T' Group and launched the Q/T Bulletin as a joint project. Ten issues of that early Bulletin were published until September of 1954 when the Boston started its own publication. The Bostonians decided to borrow the name Q/T Bulletin, but such adoption they knew, of course, mandated that they solicit and encourage men to join. Ted Sobel was one of those pioneer men , and for decades Ted was a leader in the group, a group that in 1967 Dr. Lyons declared 'one of the most effective and innovative in the Northeast'.
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