The Invisible Chimp

My daughter has had type 1 diabetes since just before she turned three. She will be in high school next year. I have learned about diabetes in the last decade like no other topic before. My former wife has learned more than I because she is usually the one around giving treatments and making observations.

I have become an in-house diabetes liaison in my school, partnered with our nurse. It's incredible to learn of all of the different levels of understanding and competency surrounding those afflicted with this disorder. Misunderstandings almost always must be dealt with before effective treatments will be used. Mishandling diabetes can be fatal, and yet a shocking number of people are not handling themselves or their condition correctly, or even with regularity.

We had been living with the insulin pump for about three years, then moved on to the OmniPod, and it makes things easier to be sure. What a brilliant use of technology! We have participated many times in the Walk to Cure Diabetes. This is sponsored by JDRF, the Juvenile Diabetes Research Foundation, and many other big organizations. Indianapolis is a great city when it comes to hosting wonderful events. Something is going on nearly every weekend while the weather allows for it. The walk this year is set to start at Military Park. I hope the fundraising event will be the most successful yet. JDRF also manages an auction each year that has been held at the Colts training complex. Everyone seems to have a special charity or cause that needs your support, but this is the biggest one for me. (You can learn more, or make a donation at www.jdrf.org.)

There's never a break from the concerns and demands of diabetes. You know how ducklings will imprint and follow around the first living thing they see? Imagine that an invisible chimpanzee had imprinted onto you. It would follow you everywhere, and you have no choice but to accept its needy presence. However, other people would not recognize or see it. They would never suspect anything to be amiss until maybe one day the chimp decided to ride on your back. How frustrated and tired you would be! You would know how to manage the chimp through many training techniques, but ultimately this invisible rider will still do unexpected and harmful things to you. You can bring it back under control, but you are never allowed to ignore it. This invisible companion will seize your attention by force if need be.

People often diminish the critical nature of diabetes. They say it is only something that means you need to watch what you eat. They assume the old wisdom about eating "sugar" still holds true. But few realize that it is potentially fatal if not managed properly and constantly. Other folks speak with me about it and wonder why my daughter can't just take an "insulin pill" like their uncle takes. First, insulin doesn't exist as a pill, and second, those who take pills are dealing with type 2 diabetes, not type 1. Insulin is broken down by stomach acids and rendered useless by the body. It must be delivered directly into the bloodstream. No choices. The new inhaled insulin system is not very reliable when it comes to delivering specific dosages of insulin.

I don't know if anyone will read this. I just started doing the blog mostly for myself, because I know that it helps to get some of these monologues out of my head. Most people in my circle of influence understand these issues. The folks who drift in and out, they are the ones I wish could read this one day and begin to understand.

Above all I want there to be a cure for type 1 diabetes. I want my daughter at some point to be able to do some of the things that kids should be able to do. Eat a pound of Halloween candy all in one sitting. Find out how much pizza is too much. Swim all day long if it suits you. She really can do this now. What I mean is for her to do it all without the intervention measures that must go along with it. Ironically she is probably living a healthier life because of diabetes.

As a father you wonder constantly about doing the right thing. Try as I might, this thing is beyond any real control or influence of mine. I can be the best provider, the most wise adviser, the funniest jokester, and the most caring role model ever, and this obtuse intruder into the family can still ruin it all. I want a cure, and I want it now.