NHL Internet Group Meets Face-to-Face
Please subscribe. With this simple command to a nondescript internet mailbox, I joined the non-Hodgkin's lymphoma list, a group of patients, family members, and friends who communicate via email. The group was started by a patient as a place for people with NHL and their families and friends to go to talk and share information, learn and receive support.
I had two reasons for joining the group. The first was to learn about dealing with NHL from the patient and family point of view. What were the issues important to patients and families? I hoped that the people in this group would give me insight and direction so that as CFL created more educational materials and programs, the needs of this population could be met. The second reason was to find out what an internet group was, how it worked, and if it was effective. I was on the list to "lurk", as it's called by group members; to listen and learn, but not to talk.
Eight months later, no longer a lurker, I ask for and receive suggestions, comments, and critiques on proposed programs and materials. I join in e-mailing congratulations or words of encouragement. I watch the interpersonal dynamics. There is a dimension to this group that can be summed up in one just word; family.
What options are you considering?" "Has anyone experienced this?" "I'm think of you as you go through this battle." "When you are sad, let us know.. whatever you're feeling is something we care about." "Thanks for your good wishes." "You all are too much..." Through messages like these we have come to know each other, Victories are celebrated, prayers are abundant, and those who have lost the battle are deeply mourned.
The qualifications to join this family are not fun. Most newcomers to the group are greeted with someone saying, "We're sorry you have to be here, but glad you found us." Newly diagnosed patients and their families are scared, desperate or information, and want e reassurance o people who have already experienced what they are going through. Within this group they can usually find it. As is true in most families, these group members give each other unconditional support and love and, on occasion, a heated discussion.
As any patient, family member, friend, or professional will tell you, support is crucial to dealing with cancer. People diagnosed with cancer and their families have an acute need for accurate, concise information and emotional support. Patients and families are usually better able to cope if they can talk freely about their illness and take an active part in their medical care by learning and asking questions about diagnosis and treatment.
On January 31, 1998, after much planning, discussion, and preparation, 40 of the over 200 people on the list met for the first time in person in New Jersey. People came from all over the country. To meet someone you already know is a strange feeling. The personalities are the same as they are in cyberland, but each now has a face and a voice. The tears, the laughter, the warmth, the love was overpowering and incredible. Even the members of the group who are no longer with us were there, brought back to life by their families, pictures, and videotape. This family's bonds grew tighter and stronger (something we thought was impossible). The bonds are as unbreakable as the spirit of the incredible people in this group.
The wonderful individuals I have come to know and love through this list are a constant reminder that a person with NHL is not simply a cancer patient. They are mothers, fathers, sisters, brothers, daughters, sons, family and friends. Some of their battles are related to NHL and others are not. I am proud and grateful to be a part of this unique and very special family.
Lymphoma Internet Groups
Non-Hodgkin's Lymphoma: E-mail (in the message section) the request Subscribe NHL to [email protected]. (List owner: Scott Pallack)
Non-Hodgkin's Lymphoma Low-Grade: E-mail (in the message section) the request Subscribe NHL-low to [email protected]. (List owners: Ben & Janice Haines)
Mantle Cell Lymphoma: E-mail (in the message section) the request Subscribe to [email protected].
A huge thank you goes out to Scott, Ben, Janice, and all of the other people who dedicate a great deal of time and energy to keeping lists like these organized, alive, and running. These lists are a source of support, hope, information for hundreds of people and would not be possible without the effort of these wonderful people.