Around middle school, one of my best friends had a sick sister. Diagnosed with clear cell sarcoma of the kidney, Elena was six years old and was in need of constant medical treatment. This put incredible strain on the family, not just financially but emotionally as well. There is only so much support people can give each other, particularly when they are affected by crises as well.
Through Elena I was introduced to a program called “ConvoMania” which, sponsored by Apple, gave children and teens with serious diseases laptops and internet chat rooms, so they could share and open up with other kids in similar situations. Not being sick myself, but feeling a connection through my friend and his family, I joined in the conversations. The program held scheduled chats as well as general round-table discussions, and eventually I was asked to help lead some.
Nurses, relatives, counselors, and friends all logged in to help and support the children. Some suffered from terminal cancers, others from debilitating diseases, and a few lucky ones even made it through. ConvoMania was there for them all, whether they were at home or in a hospital.
Over the many years I’ve lost touch with most of the people I knew on those early online chat rooms, an overwhelming number having succumbed to their illnesses, but there are a very special one or two with whom I’ve maintained ties, even more than twenty years on now.
ConvoMania was eventually rebranded “ConvoNation” as Apple hoped to expand its reach, which was both laudable and fantastic in scope. Sadly the program was cut or otherwise faded a short while after, but many of the volunteers kept unofficial chat rooms open, and even made a theatrical musical about the program.
Nowadays the internet doesn’t have much information about ConvoMania or ConvoNation, but I have one of the posters framed at my bedside, and I still keep a business card in my safe, reminders of the connections I’d formed, and hopefully the help and solace I was able to provide to people who needed it most. Elena didn’t survive to see the end of ConvoMania, but I’m incredibly thankful that through her I was introduced to such a rich and caring group.
Here’s the official text from the poster that has hanged next to my bed for more than a decade:
In 1996, the Worldwide Disability Solutions Group of Apple Computer began ConvoMania, a program aimed at changing the day-to-day experience of being a seriously ill or disabled child. Today, on the Internet, ConvoMania is available to kids around the world. Boys and girls who begin too many sentences with “I miss …” Kids who are sick and tired of being sick and tired.
The kids who participate in ConvoMania know that when they hear “This won’t hurt,” they’d better run for cover. They roll their eyes when someone pats them on the head and smiles what’s supposed to be a real smile.
Using technology, ConvoManiacs are searching for straight answers. Not necessarily from doctors or parents. From each other.
ConvoMania. A place where it’s really OK to be ‘not OK’. A place where being different makes all the difference in the world.
I’d like to close by quoting Elena herself, someone who was such a bright spark in what was such a tragedy. This, too, is from the poster on my wall, among quotes from several other children and teens:
A long time ago, when I was 4, I had my leotard on and I was sitting on my Daddy’s lap. Then he felt a bump on my tummy and told my mommy. Then I went to Stanford Hospital. Now I am in the first grade. I love every thing and person in the whole world.