“It’s the End of the World as We Know It” is from one of my all time favorite bands, R.E.M. When I was diagnosed with Type 1 I had an R.E.M. CD in my car with that song and I was playing it frequently. Every time the song played I wound up in tears. I can’t tell you how long it continued, I don’t remember. At least for a few weeks and probably longer, and I never discussed it with anyone before now. I felt like it was the end of the world because I was terrified about what my new disease meant and what was coming. There are plenty of things to be worried about! It takes some time to come to terms with them all. Sometimes I’m still not sure I have, but I keep trying.
On the day my endocrinologist gave me that first shot of insulin, I told the friend who was with me that it meant I would die early. I held off on crying until after we made it to the parking lot (victory!), but then I lost it. I didn’t know what diabetes meant but I was pretty sure it involved a shorter lifespan. The reality is that it might and it might not. The most recent information I’ve seen is that Type 1 shortens the average life expectancy by 12 years. Ouch! Since I don’t know what my life expectancy was before I was diagnosed, that isn’t quantifiable. I don’t know what I would have gotten, so I don’t know what (x – 12) is. And since it’s an average, it means plenty of people lose less than 12 years, others lose more and some even gain time. When we were in grad school, my roommate and I made bad statistics jokes. One was “skew the distribution in your neighborhood,” a play on Mr. Rogers. I don’t want to be average; I want to skew that distribution to the high side and I’m doing what I can to get there. I’m also hopeful that being diagnosed in my 40s means my odds are improved since that means 30-40 years less damage from high and low blood sugars in my body. We’ll see how things turn out, but I’m planning to stick around for a long time.
At that same early endo visit, he told me I needed to start taking a statin to lower my cholesterol. I declined immediately and we debated the subject for a few minutes. I’ve done a lot of reading about cholesterol and am comfortable with my test results and lack of family history. My doc agreed to let the issue go. But in the next sentence he tried to scare me into changing my mind when he said “we’ll revisit it after you have a stroke or heart attack.” We actually revisit the subject every time I see him when he reminds me again that I should be eager to start my statin regimen. It’s not happening, but he’s going to keep trying to scare me into obedience.
The statin chat is my favorite example of managing diabetes with fear. But then there are the other fun things to worry about over time. When I told my eye doctor about my diagnosis he happily shared that we have some of the top retina specialists in the U.S. available right here in Cleveland. Awesome! But…I’d really rather not need to see any of them. Each time I see the endo he asks if I’m checking my feet daily for injury. Why my feet? Because any unnoticed injury could be the one that ultimately leads to amputation of a toe or a whole foot. Neuropathy from high sugar could mean I wouldn’t notice that I stepped on a rusty nail. Circulation problems could lead to poor healing or higher risk of infection, and then they could need to remove that part of me. Not something I’m interested in, thank you. And one more that I forget about – when I was diagnosed with high blood pressure around the same time as T1, I asked why I was prescribed the specific medication I was given. The reason for that drug? It will help protect my kidneys from the damage diabetes can cause. Oy vey.
My point here isn’t to scare anyone or to say that I expect to leave this world prematurely, blind and 7-toed. My point is to explain that so much of Type 1 is about fear and the language of fear. Nobody’s ever going to say I’m the most optimistic person they’ve ever met. No chance of that! I’m often the sarcastic cynical in any crowd and all the possibilities of T1 scare me. Of course I worry about the long term complications that could hit me down the road. But I’m not good with living filled with fear and anxiety. I prefer to think that I’m fighting and I’m winning instead of that I’m biding my time until I have the heart attack my doctor believes I’ll assuredly drop dead from without his help. This is a chronic disease that can kill me and everyone dies from something wearing a pile of scars from experiences good and bad. There’s no guarantee that T1 is going to get me and I’ll keep doing everything I can in the meantime so that something else gets me when that day comes. I’m planning to go out with my eyes and toes intact, thank you very much. Living in fear is way too much work. I’m living my life.
On the side of positive reinforcement there are 2 organizations I’m aware of that celebrate lives lived successfully with T1 and both send medals to commemorate significant diagnosis anniversaries. Lilly Diabetes awards medals at the 10, 25, 50 and 75 year marks. The Joslin Diabetes Center also awards medals after 50 and 75 years of living with T1, and a certificate after 25. Why are they giving out awards for reaching T1 milestones? Because it isn’t easy to do and because it was impossible to reach those goals not so long ago. I’m not holding out any hope for 75 years, but I’m aiming for those 50 year medals and can guarantee I’ll submit my application each time I hit one of those marks.
The pictures from my first skydiving experience tell the whole story. I couldn't stop smiling before, during and after the trip of a lifetime. Living!