My last few posts have been a pretty down-and-dirty description of my sessions with Morpheus describing many of my buried and repressed feelings about the last 40-odd years with diabetes. If you haven’t read them, I’ll condense it down to a few sentences.
I stand here a failure. You see, when I was seven years old, I learned I had a disease and I would always have it, right on up to the day when it killed me, probably before I was 25. Well, it was 1970 and the “sugar diabetes” was all bad. I’d die, but not before I went blind, lost a leg and probably a kidney as well. My failure? Well, somehow I failed to die. I thought I had survivor’s guilt, seeing that I had survived basically ignoring the disease while so many did not. So many who had tried so much harder than I had. It wasn’t actually guilt though, it was shame. I was ashamed of still being alive, and I still am to some extent.
That whole thought process started when I was very young, trying to find a reason why this had happened to me. I ended up making it my fault because that was all I could really understand at that age. My parents grew up during the Great Depression, so I was brought up with a “sometimes life is hard” mindset. It wasn’t that they didn’t love me or worry about me, but they weren’t equipped with the tools to help with this any more than I was.
So there I was, a smile on my face anytime anyone asked about diabetes like it was no big deal. And inside? There was a seething morass of anger, guilt, fear and apathy that soon took over my way of thinking, of living. Why Bother was born and has been a constant companion for all these years.
I kept myself isolated, distant from friends and family. Not even allowing myself to really form memories of special occasions. Trying to protect my children by being distant from them so it would not hurt them so much when I did die.
The years turned into a decade, then another, a third, a fourth, and now into a fifth. I kept on living. Kept on barely doing the minimum to even physically survive. Hearing the stories of those who had tried so hard, the children and their parents who had worked so hard.
And I couldn’t even die. It shamed me that my continued survival would hurt the loved ones of someone who had not. Someone who had just as much reason for living as I. I am ashamed that I have given people a reason to ask “Why us? Why not yours?”
I can’t answer that question.
I write these posts to tell a story. A story that never needs to happen again.
Parents, I know you love your children and would do anything in your power to take this from them and into yourselves. Unfortunately, you can’t.
What you can do is make sure that your child, loved one, or significant other knows that any feelings they may have about their diabetes are normal. There will be days it makes you angry, sad, scared. Even days where you go “That’s cool” because you met someone simply because they had a pump clipped to their belt.
Let them know it is ok to have these feelings and to talk about them. Help them learn that talking about these things is just as important as testing, carb-counting and dosing. Letting it all stay inside and simmer will lead to a future like my past.
I don’t think this is something you can force, you have to make sure that they feel comfortable talking about it and then they will. How can you accomplish that last part? I don’t know, that’s for you to discover.
All I can say is I know that my story is not a pleasant one for parents to read. And the things that affected me so strongly may not happen to you. However, just because it isn’t pleasant or may not happen does not mean you can be oblivious to the possibility.
The possibility is that the long term emotional and mental toll can be much worse than the physical one. And it doesn’t need to be.
**This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at **http://diabetessocmed.com/2012/february-dsma-blog-carnival/
© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com