Ted Kennedy Jr.
The Power of Support
by Julie McKenna
The diagnosis and treatment of cancer can be a frightening experience for anyone and is often accompanied by a feeling of isolation. Ted Kennedy Jr. knows this all too well, having lost his leg to bone cancer nearly 30 years ago as a child.
He is now speaking out about the power of support and how it can help a person with cancer better manage his or her cancer experience. As a cancer survivor and a board member of The Wellness Community, Kennedy has been instrumental in the recently launched Virtual Wellness Community, sponsored by Amgen, Inc. “The Virtual Wellness Community is an idea that was created by the fact that so many people use the Internet to find healthcare support and information,” says Kennedy. Available through www.thewellnesscommunity.org, the program provides free, professionally moderated support groups for people with cancer.
In a pilot study conducted by The Wellness Community, UCSF and Stanford, results show that people experienced benefits from online support groups similar to benefits found in face-to-face support.
At the age of 12, Kennedy noticed his leg was hurting for long periods of time after football practice. He had X-rays and a biopsy that showed he had osteogenic sarcoma – cancer of the bone and cartilage. His leg was surgically removed the day after his biopsy. Although he had to undergo chemotherapy for two years, he was able to participate in sports as early as six months after his surgery.
I can’t tell you how many doctors came in and out of my room in a two year period. But no one ever stopped to ask me how I was doing.
When Kennedy was going through his operation and treatment, he did not have a support group to help him through the frightening experience. “The whole psycho-social support component was non-existent,” explains Kennedy. “I had teams of doctors evaluating me, reviewing me; I can’t tell you how many doctors came in and out of my room in a two year period. But no one ever stopped to ask me how I was doing. This was the early 1970s and the whole idea that a person’s mental outlook can actually play a role in his rehabilitation was considered cutting edge. Now it’s more of a critical component, because the idea that cancer patients are scared and stressed out is seen as normal and is expected.”
Kennedy believes that if there had been a support program like the Virtual Wellness Community available when he was diagnosed, it would have helped him through some rough times. “I didn’t know any other kids who had lost their leg to cancer, so I was definitely disconnected from other people,” recalls Kennedy. “I think it would have been very helpful to me to hook up and learn from other kids who were experiencing the same sort of thing as I was.”
While having cancer was devastating as a child, Kennedy feels he has gained from the experience. “Cancer gave me a perspective on my life that I don’t think I would have had otherwise,” Kennedy reflects. “It’s helped me separate the things that are worth worrying about and those things that really aren’t worth worrying about. It’s taught me to ask a lot of questions and to get in touch with my feelings. There’s no question that my experience with the healthcare system of 25 years ago or more led me to my career path today, which is an advocate for cancer patients and people with disabilities and a healthcare attorney.”
The advantage of getting involved in support groups is that they afford many people the opportunity to not only receive help, but offer help to other people. “Everybody can do this,” Kennedy emphasizes. “I don’t think you need to be Ted Kennedy Jr. to have an important impact on other people who are facing similar problems. All of us can be examples and mentors to other people and that’s what The Wellness Community really does. It enables people who feel like they are the only person going through this to instantaneously meet with other people who are experiencing the same thing, and it empowers them to take a more active role in their recovery and not to sit and feel sorry for themselves. I’m proud of my role in helping other people through the power of example.”
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This article was originally published in Coping® with Cancer magazine, May/June 2002.