Magazine article The Exceptional Parent

We Can Survive

Magazine article The Exceptional Parent

We Can Survive

Article excerpt

After surviving cancer, Susan Nessim has made herself a resource for individuals with special needs and their families.

For Susan Nessim, necessity is the mother of invention. After ridding her body of cancer, Nessim and her best friend, Lisa Jamison (who had been diagnosed with ovarian cancer), realized that survivorship opened up a flood gate of issues. The two decided to start their own support group.

Nessim had been in New York City the week of July 27 to screen one of her documentaries for young survivors of cancer at Memorial Sloan Kettering Cancer Center. The color in her cheeks, jovial smile, and thick sandy hair, make it obvious that she has triumphed over an illness that has taken countless lives.

"I do talks `all over the country and, in fact, I'm leaving for Montreal tomorrow. When I speak, I always start with my personal experience because I think that it breaks down the walls when people know that I am not a professional telling them how to feel," declares Nessim. "They know I've been through it, so there's an instant connection."

Nessim recounts her experience with rhabdomyosarcoma (a form of cancer that affects the muscle tissue). Diagnosed in the beginning of her freshman year at the University of Colorado-Boulder, Nessim was whisked away from the dorm and academic life she had started to enjoy. Thrust into the realities of fatal illness, she met her best friend, Lisa, on the cancerward. "We decided to go on vacation when Lisa was very ill," remembers Nessim. "She was having a lot of long-term problems from her treatment and I was dealing with dating and discrimination issues. We just turned to each other and said, `We've got to do something. We are survivors of cancer and the only support groups we know of are for those who are in treatment.'"

Nessim briefly looks towards the ceiling as she confides, "Lisa was floating on a raft in the pool when she came up with the name `Cancervive.[R]' Unfortunately she died soon after that and I took the name and started the organization in 1985."

Cancervive[R]

Today, Cancervive[R] has six chapters in California, and a chapter each in Dallas and Chicago. The mission of the nonprofit organization is to help those who have experienced cancer, including siblings, friends, caregivers, and parents. The organization aids those dealing with infertility due to treatment, discrimination, and issues such as getting back into society, sibling relationships, fear of recurrence, and more. Cancervive[R] also strives to educate and reinforce a positive identity for those who have survived cancer. "We provide counseling, education, and advocacy," explains Nessim, who is president of the organization.

Aside from the counseling and public outreach programs, Nessim has created a "tool box" consisting of a board game, publications (which she is currently in the process of updating), and several video documentaries. She confesses that when she returned to college two years after her diagnosis, her major in business marketing/creative writing helped her attain the funding she needed from pharmaceutical companies. "I wrote up several proposals to companies that were already involved with the illness, but were not involved with survivorship issues. I made some compelling pitches and they signed on," notes Nessim. As a result, the products are free (unless ordered in bulk).

In producing both the publications and Cancervive's[R] documentaries, Nessim and her staff spend a great deal of time in and out of cancerwards--observing and interviewing children, adults, and parents to find out what issues need to be addressed. Nessim has used some of her own experiences in creating her projects. (In fact, Nessim's book Cancervive: The Challenge of Life After Cancer [Houghton Mifflin 1991] chronicles her personal experiences with survivorship issues and strives to prepare those exiting treatment) Although these materials are mostly designed for individuals with cancer, the underlying methods can be utilized by any and all individuals with fatal illnesses and special needs. …

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