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D-Blog Week: What Brings Me Down … and Then Back Up.

Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged.  People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know.  It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Last night, before bed, I kissed my husband goodnight and tested my blood sugar.  The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day.  The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”

Diabetes isn’t just in my pancreas.  Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.

Diabetes gets right into my head, into my mind, and frays the edges of my emotional health.  I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

It’s not a “set it and forget it” disease.  It touches every moment of every day.  It impacts decisions I made decades ago, and I worry about its influence on my health decades from now.  Even something as simple as lunch isn’t “just lunch.”  The food on my plate looks more like a paint-by-number set than actual food.  It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.


To be honest, this Diabetes Blog Week topic makes me uncomfortable.  Not because it’s bad, but because it’s hard.  It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out.  It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.“  It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.

But I have felt long jags of it.  Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes.  Even though I don’t want to be defined by this disease, it does explain some of my sadness.

As I wrote last September:

“I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do.” 

Perspective is a funny thing, though.  Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad.  But the good days are magnified, and magnificent.  I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood.  Small victories fill my soul because I know they are the result of my hard work.

This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow.  On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.

And I am grateful for a body that, despite not making insulin, still knows how to make joy.

 

20 Comments Post a comment
  1. Just yes. I wrote something similar to you, with the idea of doing it all again tomorrow. It’s relentless, but I love the way you ended this. We aren’t broken people, even if it does feel like it.

    05/14/14; 10:02 am
  2. Beautifully said, Kerri. To your comment about ‘not feeling sick, but not being entirely fine’… my grandma made a comment once hinting that I was not healthy. The reminder was like a kick to the stomach. In some ways, post-diagnosis I am probably the healthiest I’ve been in my entire life, but I’m also not. How frustrating.

    05/14/14; 10:07 am
  3. I’m so glad I found your blog, Kerri. Honestly! This is how I feel all the time. I am one of the smiliest, goofiest, happiest people. But mannnnn is that downward spiral a buzz kill sometimes. Just keep swimming, just keep reminding yourself that you’re doing the best you can do with what you have. And, as my mom always says, “Thank God for what it’s not.”

    05/14/14; 11:26 am
  4. Suzanne #

    My 7-year old is the T1D in our lives and I often wish I had it myself so I could better understand it for him. I know it’s crazy, but maybe he’d feel less alone with it. I do think it makes him a better and stronger person in so many ways, ways that our other children don’t have and won’t ever.

    05/14/14; 11:56 am
  5. So beautifully said. But I do wish that people would stop asking about the chance that children may also become diabetics. I have a genetic heart condition that each of my children had a 50/50 chance of inhereting. It was devastating to find out that I had passed it on to my daughter. A billion times worse than hearing that I have it. My daughter-in-law is a type 1 diabetic. People ask me how likely it is that my grandson may develop it also. The thought turns me into a ball of anxiety, and to be honest there is nothing I can do to stop it from happening. I just want him to be happy and healthy now and not worry about what I can’t change.

    When your life is determined by your next heartbeat, every heartbeat is incredibly important. But thinking about it doesn’t help.

    05/14/14; 2:20 pm
  6. I said “Diabetes is not set it and forget it” to an interviewer a couple of weeks back! Did I get that from you at some point? Anyway, you make a lot of great points. Sometimes I liken it to being “on stage” all the time. Not being “on” with your diabetes can have disastrous consequences. But being that diligent all the time, every day, is a very tough thing to do.

    05/14/14; 3:42 pm
  7. Janet #

    Well said. Thanks for your honesty in articulating how difficult living with diabetes can be but still finding joy everyday.

    05/14/14; 5:18 pm
  8. Amy #

    I thought this morning on the way to take my 9 month to the doctor that it has been a while since anyone said anything about him developing diabetes.
    My response will be the same as it has always been, and always will be: he will not be alone with it, if he ever does develop T1D.
    To me, that’s enough.

    05/14/14; 5:25 pm
  9. John #

    Very well said………

    05/14/14; 5:31 pm
  10. Thank you for writing this post!

    Diabetes has an indubitabitable effect on our mental health. In order to cope we must communicate. Unfortunately for us, emotional expression requires exceptional courage.

    A major obstacle – one that you have made me fully conscious of – is the fear that, in facing our feelings, our intellect will be incapacitated. Experience often confirms this fear. This is not conducive to developing emotional openness…

    Maybe – and I’m just throwing this idea out there for consideration – it would be beneficial for us to see emotional expression as being akin to being on shots/the pump: occasionally uncomfortable, yet necessary. Perhaps that would allow us to avoid the trap of emotional repression.

    I am sorry for the essay-esque comment!

    05/14/14; 5:40 pm
  11. Mom #

    Even today, as your mother, after all this time, I still get teary eyed at these posts. But of course you know that if you fall down that rabbit hole, we have rope to help pull you out! Your outlook on life is reflected in what a good mother and wife you are. So there!

    05/14/14; 5:53 pm
    • Cynthia boisvert #

      So well said. Thank you, From Briley’s mom

      05/14/14; 8:25 pm
  12. I love that your mom posted above. Mom-ing is my job over here. In case it is ever needed, I come prepared with a flashlight for those rabbit hole days. And ofcourse, a little glucose too. :)

    05/14/14; 8:20 pm
  13. Windy Cobourne #

    You nailed this one. You are such a great writer. Thanks again for not making us feel alone.

    05/14/14; 8:54 pm
  14. Sadie #

    Thank you for sharing. So many days are hard (and will be even harder) but I will not let this disease define me!

    05/14/14; 9:18 pm
  15. My goal tonight is to comments on some of the new blogs – and this isn’t one of those but, I’m totally blown away by this, “People talk about my daughter’s chances of developing the disease…”
    Really???
    How terribly rude!!!
    Even worse than how old are you and/or how much do you weigh?
    I’m sorry you have to deal with any comment like that.
    Really.

    05/14/14; 9:59 pm
  16. Kristine V. #

    Thank you Kerri. As always you hit it spot on. For some reason every time I have a diabetes burnout and I feel that I can’t manage my T1D I enter your blog (like I do every day) and you have posted your thoughts which I can relate 100% to and I feel so comforted. Since I was diagnosed at 19 I have never had any family member (like a mother, father, sister, brother) who could/would ‘take-care’ of my emotional health and support and understand me. They have never seen me 24/7 with this disease over a longer period- so they don’t know what it’s like and how it affects me. That is why your thoughts are like gold to me. Your blog is my savior a lot of the times when I’m feeling down. Thank you so much.

    Hugs <3

    05/15/14; 2:07 am
  17. Michele #

    Diabetes isn’t the devil you know, its more like a whole host of demons each with their own unique forms of torment and you never really know which one(s) are showing up for the day.

    05/15/14; 9:00 am
  18. Lindsay #

    Love, love, love this!

    05/15/14; 11:40 am
  19. Thank-you for this. Just, thank-you! Oh my goodness i could relate so much to this, right down to the plate as a “painting by numbers”. It resonated with my especially, as i am currently in recovery for an eating disorder that was catalysed by my struggles with diabetes.
    Your blog gives me so much hope, i am truly grateful and know that it has helped many others too. Keep smiling :)

    05/19/14; 6:50 am

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