Mortality and Rest

I need to get this off of my mind.  Because my blog started as an outlet to deal with the often hard and unclear emotional mess diabetes brings, I somehow feel it best to do it here.

My best childhood friend’s dad passed away recently, and the funeral is tomorrow.   My friend lived just around the block from me, and his dad also had type 1 diabetes.  It didn’t really strike me, until recently, just how much of a comfort that must have been to my parents as I was growing up.  It was his heart that got him, and I can’t help but think about the role diabetes played.

I’m having a lot of trouble dealing emotionally with this funeral, and it sucks.  It’s unfair for me to be upset when this approaching day is not at all about me.  And to blog about it?   It feels altogether inappropriate and completely appropriate all at the same time.

When my time comes, I want you to celebrate that I don’t have to do this exhausting diabetes thing anymore. I will finally have some peace from the constant attack that diabetes forces into every waking (and sleeping) second of my life.  I will finally be able to rest, without worry about my blood sugar, food, insulin, exercise, guilt of imperfect control, or when diabetes will sneak a punch through my defenses.

I live tired.  No. I live exhausted.  I think it may be fair to say that all of us with type 1 diabetes live exhausted.  There are but two ways to relieve that exhaustion.

I wait patiently for a cure (I have not lost faith), but we can only hang on for so long.

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89 thoughts on “Mortality and Rest

  1. Hello Scott – I think it is healthy and good therapy to blog your feelings about diabetes! I have had t1 diabetes for over 43 years. I just found this site so this is my first comment. I would like to share how I have felt about having diabetes all of these years. I think there is another side that should be considered: I felt like the Lord gave me diabetes as a gift. I know that may sound strange but diabetes helped me be more health conscious and introduced me to lots of friends at a diabetic camp in Missouri. Sure, there are daily issues with BG control but something to remember is we have the tools to take care of ourselves. I think it would be a benefit to all diabetics to think more about how they can help others live a happy life. In doing so their own lives will be better! May I recommend that each of you seek out a camp for children with diabetes and become involved in some way at that camp or helping them raise funds. (or at least make a donation) Most camps are seeking financial assistance! Most children with t1 are the only diabetic in their school so some get the feeling that they are in this world all alone. A diabetic camp helps them make friends and realize that “hey, these guys are just like me and face the same kind of things that I do everyday.” It also gives the parents (especially if their child is under the age of 11 or so) a short break from the daily worries Final thoughts – I do think that I would probably not still be around if I had not attended diabetic camp from about age 14. I think we should be grateful instead of sad about our diabetes. After all, think of all of the friends that you are making and reaching out to! A friend of mine likes this philosophy: We are not diabetics – we are people that happen to have diabetes.

  2. I love you Scott, I really do. Thank you for sharing what was in your heart and in your head.
    It took incredible courage to put your thoughts into words and I am so grateful that you did. Yep, diabetes is exhausting! And processing the death of someone you loved who had diabetes that will knock the wind out of your sales, ASAP.
    I get it. I’ve lost 4 people in my immediate family to type 1 diabetes/ illnesses exacerbated by their diabetes, including my sister and my father.
    There’s not a day that goes by that I don’t think of them and all sorts of emotions well to the surface- even all these years later. Losing them (and losing them to diabetes) directly effects the way I see the world.
    I try to keep the faith in life, diabetes and otherwise. Some days/moments are harder than others – But it is in those difficult days and moments that I am most grateful for having found you and the Diabetes On-line Community.
    Hang in there friend and thank you for all that you do.
    Kelly K

  3. Scott, you are remarkable. I am touched by the number of comments and all the expressions of love and support for you and for all of us. This exhausting life is not for wimps! Thank you so much for being a beacon of hope and love and caring.

  4. Scott, this was extremely powerful but extremely hard for me to read as a mom. I want to hug your neck right now and I also want you to know that I share your faith. I have not given up hope. Not for you . . . not for Nate not for any of us living this exhausting life.

  5. Thank you for being honest. I am always exhausted and I often get down on myself for feeling so darn tired. You just made this T1’s day

  6. Scott
    I re read my comment, and I apologize if I sounded insensitive to the feelings you are dealing with.
    That was not my purpose in writng.
    After living with this type 1 for 40 plus yrs., my faith is my source of getting through this life with D, and many other life challenging issues, without completely throwing in the towel.

  7. Thank you for this. It made me cry. Partly b/c you said what I am afraid to admit, and also b/c it’s a comfort to have this community that understands the need to say it. I know my years are shorter than most due to this disease, but I also know that you can make a difference in those years by surrounding yourself with people like you. Thank you for blogging and thank you for being a support to all of us who feel the same way but are too scared to say it most days. xoxoxox

  8. Scott, thank you so much for writing this. I’m glad you wrote it for yourself and selfishly I’m glad that you put words to thoughts I have but haven’t formed so eloquently. “I live exhausted” sums up SO much for me. And I, too, lost a distant friend with type 1 several years ago and had a similar feeling of not being sure how to handle what it brought up inside of me. I wrote a poem that was supposed to be about him and ended up being about me and felt guilty. Reading your post, I see that I think it’s always about all of us, and that is how it should be. I’m thinking of you.

  9. Thanks so much for writing this Scott. As much as we don’t like thinking about the complications diabetes brings sometimes it stares us in the face and there’s no getting away from it. I’ve been having a lot of the same feelings lately. Over the last 10 years or so my dad has been hit with all sorts of t1d complications. It’s so hard for me to see him like this and to not think that’s what’s in my future.

    Thinking of you today. ((HUGS))

    • Thank you Amber, I appreciate it. I bet it’s super hard on him knowing you have to watch it. There’s no easy way to deal with all of that. Let me return the hugs and support right back to you (and you be sure to reach out if you need anything).

  10. I am new here, but not new to type 1.
    I really didn’t start pondering death until a type 1 co worker from my past (only a few years my senior)( who, by the way, I admired for her spot on D control, when, back in the 1980’s my personal control was way out of control.) fell over from an apparent heart attack while walking home from work.
    I was shocked and saddened.
    Some people cringe when you start a conversation about death, beecause, as the saying goes, “nobody gets out alive”
    The people closest to me have watched me suffer, at times, but they also have seen me laugh.
    My prayer is that they will always remember my laughter, and the times I made THEM laugh.
    I am looking forward to paradise.
    Hope to see all of you at the great, “no carb, no calorie” banquet feast in Heaven.

    • I can only imagine how shocking that would have been, especially if you admired her for her diabetes management. Talk about rattling the foundations of how things should be, right? I too am looking forward to paradise, and yes, let’s sit together at that banquet. 🙂

  11. I have to be honest, this is something that I just don’t think about much. Not because I’m in denial, but thinking about it is just too hard. It’s too damn hard to deal with that fact. Then one day, when you’re least prepared for it, reality comes and smacks you in the face. I’m only 38, and one of my high-school classmates has already been lost due to T1D. It could have been me.

    (After typing that last sentence, I stared at the screen for five minutes debating if I should write “inevitably, someday it will be me”, but I can’t do it. I don’t really even think I believe it.)

    I guess this doesn’t help much. But maybe this quote, that just now flashed on the right side of the screen in your own blog, will. “Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it’ll pounce on you and rip you to shreds.” -Wil DuBois.

    Don’t give up, Scott. Please don’t give up.

  12. Oh Scott, this post brought tears to my eyes. This week marked the 5th and 4th yrs respectively since my mom and dad died; I was recently diagnosed with T2D and have been SO stressed, SO tired, SO emotional that I don’t even know how to function sometimes. Really the diagnosis just sort of gave me a justification for why I’ve felt so poorly the past 6+ years.

    Anyhoo… I don’t think you were trying to make someone elses’ passing all about you, and even so, I totally “got it”.


  13. Happy in a tearful kind of way that I stumbled upon your blog today. Can’t tell you how many times I’ve felt exhausted over the last 18 diabetic years of my life. Mortality IS scary. I just lost my Dad last year. I am 39, type 1 diabetic, and have a 16 month old. How long will I be around for her? How will my diabetes affect her life? Will she understand what battles I put my body through just to have her, and how very grateful I am that I could have her at all? I don’t wish this ongoing-diabetes-struggle on anyone, and certainly not on my child – please, God, don’t let diabetes ever touch her perfect little body.

  14. Scott, your faith is apparent in this post, and it is beautiful, my friend. I second your thoughts about how I’d like my friends to feel when my time on earth comes to a close. I want to be celebrated because I will have healing and peace beyond anything found in the earthly realm. I will dance and sing and ride with no diabetes. My body on earth is a perfect creation because He does not make mistakes. But in heaven, perfect will have a new meaning.

    I’ll keep you and your friend’s family in my prayers. Death is hard because we want those we love next to us. But what comes after death is the true treasure.

  15. Scott, this is my first time here, and thank you for this. People without diabetes or another chronic condition just don’t get our relationship with death– that we have to sidle up next to it sometimes, make our peace with it, because of what our lives are like. I’ve had Type 1 since age ten and this makes so much sense to me, and no one has ever said it quite like this before. Condolences on your friend’s dad (my best friend lost her mom last year, though not to diabetes, so I kind of understand where you are with that one, too), and peace.

  16. (((HUGS))) and sending prayers…

    The ‘norms’ go through life possibly thinking about the end of life, maybe making some plans but … people living with chronic disease are forced to think about death & dying so differently…I think I comment more about my funeral and ‘plans’ more so than my ‘norm’ friends and even as the kids are getting older I want to make sure it is a celebration of life no matter what the circumstances or age I am, if and when….I make jokes about it and try to always make them smile but on the inside I’m racked with guilt that D may play a role in whatever comes my way eventually and it seems weird to think I’m already sort of ‘at peace’ with it whether I live 5 to 50 more years…yes ‘le tired’ comes into play so often…we have our ‘moments’ but we can’t obsess because today is a gift!…let it out Scott! LOVE YOU bro!

    • I think it adds another whole dimension to everything when we have kids too, because we worry about them, and don’t want them to be saddened or worry. And yes, a celebration indeed! Thanks Jaimie.

  17. Scott, I keep trying to find words for how this post has affected me, but I can’t find the proper ones.

    Chris and I have had the strangest conversations about death since our daughter was born, and it’s always about what I hope for her after I’m gone, and what I may not see. And we’ve talked about how I’d like to be remembered.

    What strikes me is that we never have the conversation in reverse. We never talk about him leaving first. And the reality of that wraps its hands around my throat and my heart. It makes your post resonate in a way that makes me ache.

    So much love to you and your family today, Scott.

    • Boy, what a thought – that you guys never talk about if Chris goes first. I never thought about it, but we’re the same here. We (or maybe I) just always assume… and that alone is dripping with meaning, right?

      Thank you Kerri, I appreciate the heck out of you.

  18. Scott, we don’t walk around with rose colored glasses in the Kelly household, but boy are we thankful for bloggers like you. I am a parent of a CWD and a wife to an amazing man with type 1 also. I know that until my son was dx with type 1 my husband never, ever, truly discussed his emotions in regards to t1d, he was raised to have a stiff upper lip…so, while searching for answers after my toddler’s dx I found your blog and countless others. Reading the post aloud to my husband has helped us create an incredible dialogue about t1d. I know from his experience and being a parent of a cwd that the t1d life is never ending, but I want you to know that you make a difference. I appreciate you and your ability to share the truths of your life. Thank you and ((HUGS)) loss is hard, very hard, take the time to feel it all and be okay with whatever emotions come about from this. And really, thank you for sharing with us.

  19. Thank you for voicing my thoughts. Because I’m a PWD with no spleen someone can say the word germ and I get sick. You’re right it’s exhausting and it’s scary. At what point do you say “I’ve had enough?”

  20. I cannot post what I keep writing so I will say this…

    I love you just like I do my family, because you are family.

    You are the brother I never had, or I should say, you are my brother. I believe it.

    One thing I am really good at is showing my emotions and letting tears fall where they will. It actually feels like you get stuff out when you do it. So, don’t be afraid to let it out.

  21. Scott, any kind of disease/condition that makes us feel like everything is work is exhausting. I know how that feels, not only about diabetes, but about depression. Some days I feel like what’s the point? But we’re still here because there are things to do.

    I’m sorry for your loss and I’m sending you a big hug!

  22. Scott, what an emotional read. I was just thinking the other day how amazing the DOC is and yet how hard it will be watching people get old, develop complications and pass away. We get so much support from each other but sometimes it’s easier to just bury our heads in the sand and pretend, as Scully says, that it’s all sunshine and lollipops.

  23. Oh Scott. That just caught me like a sucker punch to the gut. We do live exhausted, you are so right. I’m so very sorry for the loss of such an important figure in your life. We love you. You are not alone. xx

  24. It’s not wrong for you to think these things or write about these things. Diabetes isn’t EASY, like you said it’s a very exhausting disease and it wears our body down overtime because we constantly worry that everything is okay. I hope that when my time comes too that my friends and family that have known me for years and that have know about my disease will praise that I no longer have to constantly worry about whether or not my blood sugar is alright. Whether or not it’s going to fall low in the middle of the night and me not know about it, and it put me in a coma or kill me. These worries scare me, but I also know there is a possibility that they can happen and if they happen I know that I’ve lived with this 22 years and for the most part I’ve lived a normal/healthy life.

    Thank you for your blog, it really hit close to home. I know what your going through. And I know it gets tough but we have to keep our heads up and keep fighting. One day there will be a CURE for Diabetes. Just not sure there will be one in my lifetime.

  25. You are probably right that knowing him was comforting to your parents. And, knowing you is comforting to me. I have loved connecting with PWD and getting a glimpse into what my son’s life can be as he grows into an adult with diabetes. And it is really ok to see the struggling exhausting side of living with T1 because it is real. Funerals hit hard in many ways, and blogs are a great place to put the feelings. That is in no way disrespectful. It, too, is real.

  26. Lauren lost a friend to the battle this spring. She was too young and while diabetes didn’t “directly” take her — diabetes and the exhaustion from it did. I hope you know that we who do not have it first hand wish with all our hearts we could do something — anything — to just give you guys even One Day Off. Some people don’t understand why some people with T1D will stop taking care of themselves for a while (as my child did). I think I do. Even that sick feeling of being high is a break from the constant thinking thinking thinking. I hope that when you feel this way you can remember to just count it out. Take it one beat at a time. Like this: One, two, three, four, five….Scott Johnson!

    • I remember that. And I think you’re right – the constant thinking thinking thinking, and always having our guard up, even when we sleep, is what is so tiresome. And who would have thought our biking technique might help with this? Brilliant. Thank you Moira.

  27. Thank you Scott – just… thank you. That really touched a raw nerve for me. It is good that you can express these emotions that I have difficulty with. It helps. A lot. x

  28. I don’t think I took a breath while reading this…getting a glimpse into how a PWD deals is always hard but prepares me for how to help my Lilyboo in the future. Thank you for that. The other day, she and Abby were playing “diabetes” and Abby wore a little pump around for 3 days straight. Then she was sick of it and wanted to take it off. At that point, it hit Lily (and me) that she can’t just take hers off. It was absolutely heartbreaking…really opened my eyes even more to her struggles. Love you and although I’ve been absent from the DOC recently…I’m really still here just enjoying my break.

    • Oh Kim, I bet that was an unexpected challenge in that little scenario. I love you guys too, and know that you are still here. Do what feels right for you and your blessed family — that is what is important. Thank you for sharing and supporting, it means a lot to me.

  29. Thank you. My son Ray, age 18, was diagnosed at age 9.It has nor been an easy ride (is it ever?). He has been in DKA at least 3 times. Hoe freaking horrible is it that on more than one occasion I have imagined what I would do if the unthinkable happened? Living with T1D for so long makes it natural to think there should be D supplies with him. But then reality sets in and I know there would be be NOTHING related to this nasty disease anywhere near him anymore. Hugs to you from a D Momma!

  30. I will be so angry (well, not really… I’ll be dead) if “diabetes” is listed as my cause of death, whenever that is. The thought of it makes me so, so upset.

    Which means that I try really hard to not think about it most of the time…

    While I’m sorry you’re having to think about it now, I’m glad you’re talking about it here. These are emotions we need to deal with from time to time. Hugs, my friend.

  31. A good friend to our family died from diabetes complications back in 2000. He was 38. He had diabetes since he was a little kid and gave up on life around 20. He drank, smoked, lived dangerous and finally diabetes ravaged his mind and body and he lost his sight, limbs and finally his life. He was really suffering at the end and death was merciful. It never clicked with me until I got diagnosed what he went through or how I could have the same experience. I have only been diabetic since 2008. my diagnosis changed from t2 to t1 after they finally ran a GAD three years into me taking the wrong medication and having poor control over my bgs. Diabetes scares the shit out of me and death is not welcome either. I know this is long winded. sorry. keep living, enjoy as much as you can. take a breather and keep fighting. i won’t let my stupid pancreas be the death of me. be well.

  32. My dear Scott – thank you for writing this. It’s from the heart. I thought about this in relation to Grace a few months ago. That when she is an old woman, and passes away, thank God she won’t have to deal with this anymore. Isn’t that utterly sad, just thinking that about your own child? I am in tears writing this.
    What I wouldn’t give for it not to be hers.

  33. I don’t think I’ve ever wanted to jump through a screen and hug someone as much as I do right now.

    I want to rip my pancreas out and give it to Justice. I want take this beast called diabetes out for good…for everyone.

    I don’t get what it’s like to be a PWD like Lora said we get the exhaustion part…but not the day to day of it all from your shoes.

    I hope you do know how much you mean to so many of us.

    I mean it.

    Love you amigo.

  34. Oh, Scott. I know… sigh…

    What IS clear to me (not much with diabetes can be defined as clear!) is what your purpose on earth is.

    All we can do is just keep fighting the good fight. Yes, it sure is exhausting, but it’s worth it.

  35. I’m not sure what broke my heart more, your post or Scott’s comment. I’m a blubbering mama! I can’t truly understand what it’s like to be a PWD(with the exception of the exhaustion… I think I can relate to that), but I too wait patiently for a cure, I haven’t lost faith either, I just hope I hold on long enough to see it happen for my sweet Justin. Thank you for letting us mamas know what it’s like. Thank you for sharing part of yourself so that we can at least TRY to understand what our little one go through.

  36. I get it Scott.

    I went to a funeral last year for someone that had a chronic illness that was then complicated by the diabetes she got as a result of the other condition. It was actually the diabetes that killed her. She was a few years younger than me. Her funeral was really hard. I feel like I understood what her family was going through and I couldn’t help but wonder – why not me?

  37. Why not blog about it? We can’t always go around thinking that we’ll live forever and be all upbeat and jolly.
    Diabetes kills hundreds of people every flippin’ day and most don’t want to face, or even acknowledge that.
    We haven’t had a death from db in my extended family now for nearly 2 years. But there are four people waiting in the wings. Two live on the west coast so maybe I won’t have to go to their funerals. But two live in Minn and I’ll have to go. And I will be a basket case, knowing that I could very well be next. I f-cking hate diabetes.

  38. “I live exhausted.” That is the perfect way of describing how I also feel (T1D for 17 years). It’s not that I am depressed everyday or always sad, but living with T1D is exhausting and it is everyday. I, too, attended the funeral of a person who had passed away from T1D complications. It was a cousin I was never close to so I didn’t think I would get too emotional. However, I LOST IT during the funeral and I can only imagine it was because I was connecting his death with myself and my Type 1. Let it out if you have to. It’s all just part of the process we call life. Take care.

    • I’ve never felt that T1D connection stronger than during this funeral. It was crazy, and so unexpected, just like what you wrote. Ugh. You sharing that made me feel a little more normal. I appreciate it!

  39. I felt the same when my Dad passed away Scott. He had lived a beaten life of T1 complications for so long, that all I could feel those first months after his passing was relief that Diabetes and its extreme complications were NO MORE. ((HUGS)) I hope you soon find peace in your heart with his passing 🙁

    I always appreciate the honesty in others feelings, this post helps me see that Im not the only one that thinks these things!

    • Thank you Kelly. Isn’t it weird? In many ways, I felt jealous that he could get away and I was still fighting. It’s a crazy thing, because I’ll fight this until I can’t, but I just never expected that emotion.

      Thank you so much for sharing.

  40. It sounds like your friend’s dad was kind of a surrogate future you—and I’m so sorry he’s gone. There’s nothing wrong or selfish about what you’re saying. I’m glad you wrote about this.

    And I’m glad you have many, many more years of exhausted living ahead of you.

    • Gosh Jeanie, if I wasn’t already an emotional mess today… 🙂

      Thank you so much. I hope you see that I’m a regular guy struggling through all of this, just like you (except the “guy” part..hehe!).

  41. It is not wrong to think this or write this. Life with diabetes is not all sunshine and lollipops. I think sharing this is a big deal for you and a good idea.
    Be strong but totally allow yourself to feel the sorrow as well. reality hurts sometimes.

  42. You’re not alone Scott. You know that and you also know that sometimes that just isn’t enough for all the crap that life throws at us.

    If you should happen to go before I do, I will tell the story of how much you loved your family, the story of how much you have helped me, and so many others.

    love ya, bro!