As an Old Schooler, I must comment on JDRF’s infamous 1 in 20 advertisement. I was shocked at some of the parent reactions in the blogosphere. Here’s a sampling:
“I spend every day trying to tell my son that he’s normal. What am I supposed to say when he sees this ad?”
“This is too scary for a parent of a newly diagnosed T1 to read.”
“This is not appropriate for T1 children to see.”
“Why does JDRF feel the need to overdramatize?”
“I don’t want my child worried she’s going to die.”
Why do some parents of T1 children have this delusion that their child is “normal”? I was diagnosed at age 6 and it was pretty clear from the start that my life was going to be dramatically different from other kids’ lives. Can people with T1 succeed in all areas of life? Sure, but you also have to teach your kids that it will be much more difficult for them, just as things are more difficult for kids with any disability. (Yes, I said the D word.)
Reality check: Years ago, I attended a presentation by Jay Leeuwenburg, then an offensive lineman for the Indianapolis Colts. The talk was about his experiences with managing T1 in the NFL. The audience largely consisted of young boys and their parents, although I was there as an adult to get some tips since I was a competitive tennis player at the time. In Q&A time, I waited for all the kids to ask their questions and then I asked Jay: “How did the T1 affect you in the draft? Were you not considered by certain teams?” Jay paused and looked around at all the kids in the audience before answering honestly. He said he felt that he should have gone higher in the draft and that he knew that some teams had serious reservations about having a T1 on their roster and would not take him because of it. Many parents in the audience turned around and gave me the death look because I asked a reasonable question that did not come with the rah-rah answer they expected. I think it’s the same mentality with the JDRF ad—some parents only want to hear the positive, not the realities.
The ugly truth is that 2-4% of people on insulin die from hypoglycemia (varies depending on source). I’m sorry if that upsets you—just turn off your computer and go take a walk until you can get your mind around that. I can’t understand parents of T1 kids who are in denial of the risks of taking insulin and the risks of a severe low.
Reality check: A T1 friend of mine had a severe low on a plane. Flight attendants figured out she was unconscious and not sleeping after the plane landed. She was in a coma for a week but survived. Because of the brain injury, she now suffers from short-term memory loss, and also has trouble recalling events in the last 4-5 years. She is in a support group for young stroke victims, since their issues are so similar. Her life has been destroyed over this. Believe me when I tell you I think of this girl every day and how easily that could have been me. But some other mutual T1 friends shrugged it off, saying that could never happen to them. Denial is a strange thing.
I do support the JDRF and these ads. The more we say that T1’s can have a “normal” life, it takes away the urgency of finding a cure. The more we say T1’s can have a “normal” life, the more people think that insulin is a cure. We should not minimize how bad living with T1 is (with inferior technology like grossly inaccurate meters) and we have a right to be angry. We as people with D have no right to get research for a cure if D is not a big deal. Minimizing T1 in the press and in public arenas is a big mistake.