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One For The Parents

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

  • Cara

    This is a fantastic post Scott!

    • http://strangelydiabetic.com Scott Strange

       Thanks Cara!

  • Colleen

    Diagnosed as an adult, I had/have many of the same feelings. Thanks to you and others of the DOC, I know that my emotions are normal. Thanks for writing about this.

    • http://strangelydiabetic.com Scott Strange

      Hi Colleen

      I don’t think it really matters what age we are or what conditions we may have.  We will all experience some range of emotions from time to time and, yes, they are perfectly normal.

      The DOC has been extremely important to me and continues to be on a daily basis.

  • http://www.candyheartsblog.com/ Wendy

    Thank you for your transparency here.  I want to hear your story.  I NEED to hear your story.  A million people will write books about how to give a shot, insert a site, or bolus for pizza.  I can read about what a low “feels” like and how a high makes the world feel like sludge.  I can see videos for inserting CGMs, learn about new technology from others who have tried it, and read a label to see how many carbs are in a candy cane.

    But I will NEVER.  EVER. truly know the nitty gritty from inside a heart that has grown up living with the same disease that my daughter has…unless they share it.

    My daughter is a “processor”.  We scratch the surface of deeper conversations, and then she takes some time to think about it…usually a few days later she’s ready to talk about it.

    I have no idea what I’m doing.

    But I do know that I’m doing the best I can.

    I just hope I don’t break her.

    • http://strangelydiabetic.com Scott Strange

       Hi Wendy

      I think it is fantastic that she thinks about it and then talks with you!  She’s not hiding it behind a smile or just ignoring things and that is so critical.

      I think you guys will do just fine!

  • http://jess-meandd.blogspot.com/ Jess

    Scott- this post is so powerful. you are helping so many people by sharing all you’re going through.

    love to you, friend!

    • http://strangelydiabetic.com Scott Strange

       Thanks, Jess… these are getting harder and harder to write

  • http://rollinginthed.wordpress.com/ Scott E

    My parents have always been supportive of me; at least I think so, because I had nothing to compare it to.  I look at an email my father sent me last fall when I was in the JDRF walk about how proud he was of me and how I handled diabetes, and it made me weep.  We have a wonderful relationship, and have for a long time.

    This is the same father that, when I was much younger, I got in a heated argument with.  I have no idea what the specifics of the argument were (though it was about diabetes) — not what started it, not what I did (or didn’t do), not a clue.  But I do remember him getting in the last words.  Five words that repeated over and over in my mind on that day and in the days that follow: “YOU’RE THE DIABETIC, NOT ME!”  He might as well have said ‘It’s your problem, not mine.  Deal with it.’

    It doesn’t bother me anymore, though.  Now, I’m older, and I realize how parents must feel.  As Wendy noted in an earlier comment, he probably had no idea what he was doing.  Maybe he was trying to teach me responsibility; maybe he was incredibly frustrated; maybe he felt over his head in dealing with me.  He’s human.

    It’s tough knowing what to say to your kids as you raise them, especially when they have diabetes.  I’m glad you’ve given the advice that you did, and I hope parents read it and heed it.  At the same time, parents shouldn’t be afraid to admit that they’re not perfect and that sometimes they don’t have all the answers.  Just be there and do your best, and please try not to say the wrong thing.  Because even though you may be forgiven, those words may stick with your child forever.

    • http://strangelydiabetic.com Scott Strange

       You’re right, Scott.  When forgiving and forgetting, the forgetting is the hard part

  • Mel

    I think you just summarized the story of my life.  I’ve been struggling to put an explanation to how i’m feeling, what i’m thinking, finding it so difficult to explain why things have been the way they have and maybe what i’d like to change, many years of struggle and now reading your post gave me a huge sense of relief!  It’s quite amazing reading your story… constantly thinking “that’s EXACTLY what I think i’ve been thinking” and breaking into tears because i’ve never been able to figure out what might be going on.  I was diagnosed in 1978, at seven years old… somehow in that age and time our life paths must have followed similar routes.  I never planned to live beyond 30yrs old, boy was it a shock when I realized that, not only am I older than 30 now but, that most of me is still alive.  “Why bother” has been my best friend for most of my life.  I might just have to make that scary turn down the dark and rocky trail you are on and work on seeking out “Will Bother”… very eager to hear about where that trail leads!  
    Thank you so much for sharing!!   

    • http://strangelydiabetic.com Scott Strange

       Wow, Mel… thanks for sharing that.  I’m glad to learn that I’m really not the only one, even tho Morpheus has been telling me that I’m not alone

  • Mike Hoskins

    Thanks for this, Scott. So much of this hits right at my own feelings, thoughts. For me, it so incredibly helps hearing your story because I see so much of myself in you. I’ve been battling the self-worth issues my entire life and feel that’s at the heart of my “Why Bother” attitude – when you don’ expect to live or succeed, the sense of failure seems normal. Anyhow, I appreciate you writing these posts and know you are helping so many people who need to read these words.

    • http://strangelydiabetic.com Scott Strange

       Thanks Mike, it’s so good to hear that I’m not alone in this

  • shannon

    this was so beautifully stated, scott. thank you. i appreciate your voice (as well as other adult PWDs) who are willing to share the dark moments.

    • http://strangelydiabetic.com Scott Strange

       Thanks Shannon

  • Jim

     I enjoyed your post and can relate to how you feel.  My dad was Type 1 and died at the age of 41.  My entire life I have had to lived with how much I look like, sound like and have my dads personality.  Why I am proud of those resemblances to my dad, it also had the effect of making me think I would never live past 40. I inherited everything from my dad why would I also inherit his early death.   I never really told anyone, but it is that small constant voice in my head.  Why it didn’t bother me in too much in my 20’s because 40 was “ancient”.  Now that I’m 39 it really bothers me and impacts making close relationships, decisions for me and my wife, and my career choices.  I hope for the best but it is that constant voice in my head that never stops.

    • http://strangelydiabetic.com Scott Strange

       Hi Jim,

      That “small constant voice” describes it perfectly I think.  It’s hard to not hear it when thinking of things, I’m not sure mine will ever totally go away.  I hope it does and I hope yours does too

      Scott

    • http://strangelydiabetic.com Scott Strange

      Jim,

      I was thinking more about your story as a surviving child and think it could be a very powerful one.  Have you ever thought about writing about it?  I’d love for you to guest post here

  • Guest

    Thank you for sharing. As a Type 3 I’m always wondering about how everything that goes with diabetes is affecting my son (he was Dx at 5). My son says I worry too much, that he really doesn’t think about it…he just does what he has to and then moves on to playing sports, hanging out with friends, schoolwork, whatever, but I often wonder if there isn’t more brewing under the surface. Add the D to the teen years and I know it’s a ride for me since I’m still the one doing his MDI routine and wonder what it’s really like for him….

    • http://strangelydiabetic.com Scott Strange

      As a kid, I always had something to think of besides diabetes as well.  It been a long time, but I don’t remember “thinking” that much about it, at least consciously.  I think I may have buried a lot of those things.  But, that’s just me, your son may not have the type of issues that I did.  I guess all I can say is to let him know expressing those feelings is ok, tho as a teenager, he may feel the need to be “tough”.  That transition from child to teen to adult is a rough time for everyone and you’ll have to decide when its the right time to start stepping back a little and turning responsibility over to him.  I suspect things will work out fine.

  • http://www.bittersweetdiabetes.com Karen Graffeo

    This is a beautiful post,  Scott.  I too have “survivor’s guilt” – and also a lot of guilt over not having complications.  It’s not fair that people who worked so hard to take care of themselves are dealing with complications – and I ignored diabetes for so long and am not.  Thank you for talking about this and for helping parents understand how they empower their children to never feel this way.

    • http://strangelydiabetic.com Scott Strange

       Thanks Karen, that guilt, or shame for me, is such a burden.  It’s going to take a lot of work for me to get past it… old dog and new tricks you know

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