Posted by Sandra Silvestri on October 31, 1998 at 18:58:38:
In Reply to: Re: ADA Advocate Alert Received Today posted by Mark Davies on October 30, 1998 at 09:11:10:
Mark:
You and Mary are welcome. I was surprised and impressed that Forecast published Mary's WONDERFUL letter but was alarmed to see the letters to the editor the following month downplaying her truth and basically advising her to get a life. I find this kind of manipulation inexcusable. Using something as heartfelt and truthful as Marys' letter to numb the pain again. I hate this. JDF gets responses to advertising accusing us of creating drama. These parents tell us that THEIR type 1 children will NEVER get complications. They are certain of it because their PHYSICIAN told them so. They threaten to sue JDF for false advertising. It is unbelieveable the degree that denial reigns supreme in the general population.
After JDF sent out my 24 hour diary direct mail letter I received letters from mothers telling me to see a shrink...but we also raised almost TWICE the amount of money ever before raised by a direct mail campaign. This diary was NOT fiction. It was a private commuincation between myself and a new staff member at JDF. I wanted her to understand what living with diabetes meant to a parent and a child so I kept a diary of every time I thought of or did anything connected to diabetes for one day. I created no drama. I simply told the truth. It raised the level of understanding and anger. This was mostly good but in some cases it produced anger directed at me. I was stunned. I thought about it long and hard, trying to assess if I had made a mistake in my assessment. I reached the conclusion that years of phsyicians and others trying to keep their patients spirits up with these wishful thinking approaches have turned into a kind of mass hypnosis.
Since then I have decided that what I can do for diabetes awareness is to try to poke holes in this denial. I don't have the brain to become a researcher (some parents do this) and make a difference this way but I have time and energy to reach out and talk. I know there are some who think I talk too much (including my husband(s)) but I have met wonderful people like you and Mary and the folks here. It makes it all worthwhile if we work together.
Thanks for your kind words. I appreciate them so much.
Sandra