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Filling Back Up.

It whispered in my ear two January’s ago, when a low blood sugar came too close to becoming terrifying as I felt the whoosh of that bullet go by. I’d never felt anything like that before, that aftermath of fear and numbness.  Then I marked twenty six years with type 1 diabetes, and I just wanted to outrun this disease, to stay ahead of it, to pretend that it can’t ever possibly catch me.

Then there was this weird feeling, one I’ve never felt before.  It wasn’t depression, I don’t think, because it didn’t feel … I don’t know … like anything I’d ever read about or been warned about by my doctor.  I didn’t feel uncontrollably sad, and I didn’t have thoughts that would have concerned my family.

There was this emptiness, though.  And I can’t put my finger on where it came from or what its role was in my life.  Not an all-consuming feeling, but it did strike me at the oddest times, like during a conference when I was hoping to be more social, or during a movie that was supposed to make me laugh, or like when I would be in the car by myself and pull into the driveway of my house, and I’d feel lost.  And empty.   Coming into the house and seeing my happy daughter and my husband filled me back up, but for those brief moments before opening the car door and letting the sounds from outside come rushing in, the quiet was overwhelming.  I’m normally a happy person – quick to laugh, and happy to be surrounded by people – but I suddenly wanted to be alone, only being alone made me feel better, for a few minutes, then ultimately worse.

I talked with some people, including my husband and my closest friends, trying to understand why I felt this way and how to keep the feelings from becoming everyday.  It wasn’t all diabetes-related, but there was something about having had this disease for twenty-six years that made me feel trapped.  I started doing destructive math in my head, about how nothing had been introduced into my life that I’d had longer than type 1 diabetes.  Diabetes has been part of my life for longer than school, longer than any romantic relationship, longer than any hobby, longer than any car or t-shirt or memory. I thought about life’s milestones and the influence of diabetes on each one, sometimes just a light touch, not enough to leave the smallest mark, other times a heavy-handed drag of claws.

A few months after marking the twenty-sixth anniversary of my diagnosis, I turned 34 years old and felt convinced that I was having a mid-life crisis.  I feared death, actively and aggressively, nervous to go to sleep at night because of the low blood sugars that sometimes crept in.  I started feeling nervous about unreasonable things.  Panic attacks, like the ones I had back in college (when my parents split and my immediate family life was very unsettled) revisited for a few weeks, making my chest feel tight and making me wonder if it was indeed panic or was I having a years-of-type-1-diabetes-induced heart attack.

But then I started filling back up, emotionally.  While marking a diabetes anniversary was the catalyst for darker times, acknowledging the feelings that made me feel unsettled made healing easier.  I didn’t see a therapist (though I would if these feelings were to resurface) and I didn’t add medications to my list (though I would have, were they necessary), but I did ease myself into things like family trips, private (non-blog) journaling, and finding time to dedicate to quiet jogs that stopped my brain from going into panicky overdrive.

One afternoon, I realized it had been days since I’d felt empty.  Weeks went by, turning into months, and then the emptiness started to become harder to remember, harder to pinpoint the “why” of, and life felt more like I remembered before my twenty-sixth diabetes anniversary.

I don’t miss feeling that way – all that emptiness – but I’m not surprised that I felt it.  Diabetes is intrusive and touches everything, like a kid with grubby hands.  For decades, I didn’t mind wiping away the fingerprints that were left everywhere, but last year, I reached not so much a breaking point, but a moment when I couldn’t bend things any further without snapping.  I didn’t want to deal with this disease.  I was mad.  Overwhelmed.  And then that empty.  It was a strange grieving process for a disease that wasn’t going anywhere and for a life that wasn’t over.

It was raining a little when I started running this past Tuesday morning, September 10th, but I decided to go anyway.  I set out after sticking my Spibelt underneath my shirt instead of over it, to protect the Dexcom receiver from the rain.  Sneakers worn from a year’s worth of logging miles and my pump clipped to the top of my pants, I ran.  I’m not a pretty runner – I slog and huff and puff and probably resemble more ‘laboring pug’ than ‘actual human’ while I’m on the trail, but I made the decision to keep going.   With each step, it didn’t get easier.  I wasn’t riding endorphins during my run, and I felt the strain on my muscles and my resolve, but I kept going because it’s good for me to run.  It’s good for me to try.  It’s good to feel healthy and to look healthy and to be healthy.

The following day, Wednesday the 11th, I marked my twenty-seventh anniversary with type 1 diabetes.

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. 

Yesterday, my daughter and I baked a cake, but I didn’t eat it, or explain why or why not.  She wanted to make fancy treat, and I wanted to see her smile because she fills my soul.  We put candles on it, hummed a sort of tuneless ‘happy birthday,’ and blew them out, marking a celebration of absolutely nothing and at the same time, everything.

59 Comments Post a comment
  1. Lindsay #

    Love this.

    09/12/13; 9:59 am
  2. I’m so happy you got your groove back…but it makes me sad to read things like that, sad for my son. I always do my very best to make the most of this D life by being positive but my Dmom heart cant stop hurting just to think that Jacob will struggle someday because of his D.

    I would take it so badly from him just to make sure he would not hurt…but I guess it is part of his journey.

    Thank you so much for sharing! xx

    09/12/13; 10:16 am
  3. This is precisely how I felt for about a year prior to discovering the DOC. I actually did start seeing a therapist. It was a terrible, dark time. Thank you for finding a way to perfectly describe it in words. I will share this will people so they can understand how I as feeling.

    ” It was a strange grieving process for a disease that wasn’t going anywhere and for a life that wasn’t over.”

    09/12/13; 10:21 am
  4. Phenomenal post, and I understand exactly that feeling you describe. Sometimes it’s about diabetes, and sometimes it’s about complete nonsense. It kind of makes me feel like the lady in the Airplane movie sometimes… http://youtu.be/qvPugcb7QGE

    …but not all the time.

    09/12/13; 10:50 am
  5. Love this! Favorite line: “It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.” Sing it, Sister! P.S. Clutch coming soon to you. Will email you next week.

    09/12/13; 11:17 am
  6. Mike #

    As I just tweeted, you’ve done it again Kerri. You’ve taken what I feel having diabetes (coming up on my 20th Anniversary) and put it into words. YOU are the reason I became more active in the DOC and it has helped me tremendously. These are the posts that make a difference and help us all realize some of the feelings and emotions that come with this disease are not singular, but plural to many.

    I couldn’t have said it better : Fuck Diabetes. I won’t stop, WE won’t stop.

    09/12/13; 11:18 am
  7. I know what you mean. My realization of this comes when I notice that my mouth feels too content in the “not smiling” position that it is currently in. I need to truly laugh out loud more. Smile at my daughter and husband more. Sometimes, to get out of the funk, I just “fake it til I make it.” And then, I can pick up and move on. *Hugs* to you!!

    09/12/13; 11:33 am
  8. Jen #

    T1D is a relentless slog with no vacation. I can balance it on my head with grace for long periods of time, keeping it in the background of my life where it belongs. But from time to time it reasserts itself in a new way, tipping me off balance, scaring me, or just making me exhausted with its constant, ongoing, never-satisfied demands. And I tip into one of the periods you describe here. Are you f-ing kidding me? You’re still here? I haven’t had a freaking day off from you in 27.5 years. Go away already. I’m so done with you. And then I have to choose again to give it the attention it demands and then shove it into the background, because this is my life.

    09/12/13; 11:50 am
  9. ria #

    thanks, once again, for expressing the feelings I am sure, admittedly or not, we type 1′s all have, from time to time
    Beautifully written
    type 1 since 1972

    09/12/13; 11:58 am
  10. Denise #

    Kerri-Spot-on and wonderfully written. It’s a bullshit diagnosis that requires constant perserverance.

    09/12/13; 12:24 pm
  11. Kelsey #

    Kerri, this post brought me to tears. You’re expressing what so many of us feel after living with this disease for years that have now become decades. I too have felt the emptiness and weariness of fighting diabetes recently. I was one of those, “it’s been a blessing” types and it was liberating to actually say, “I hate this disease!” Hating it doesn’t mean it wins, but that we’re being real about the emotional burden of it.

    You’re an amazing spokesperson for our community. We’re all really proud and appreciative of you!

    09/12/13; 1:23 pm
  12. Yep, crying and probably should not have ready this at work while eating lunch BUT, I can’t imagine any T1D not relating to this on some level. Well put Kerri and Happy Diaversary to you

    09/12/13; 1:45 pm
  13. Nothing like a 3-cubed anniversary to make things better…it’s the math nerd in me. Diabetes is such a drain, remember that post from Kelly, about how much time diabetes steals from us. On the other hand, diabetes has brought a lot of positives into my life. But I’d drop it in a heartbeat, if I could.

    I forgot we’re nearly twins. My 41st year anniversary was on the 10th. Too busy/strained to take time out to blow out a candle to mark the passage.

    09/12/13; 1:45 pm
  14. Thank you for your honesty, for your willingness to keep running. I’m cheering you on.

    09/12/13; 2:26 pm
  15. Larry Here #

    Good piece of writing, Kerri. Your last line put me in mind of this old Eddie Harris piece. If you are a jazz or improv fan, you may enjoy this! Conversations of Everything and Nothing! http://grooveshark.com/#!/search/song?q=Eddie+Harris+Conversations+Of+Everything+And+Nothing

    Keep up the good work. Your musings help keep my care for my T1 dd, age almost 6, 4years in, in perspective…

    09/12/13; 3:22 pm
  16. Kerri, I think what you’re describing here is something that I’ve gone through too. For me, the diaversaries initially make me think I should be grateful for living this long with diabetes. But in reality, we shouldn’t be grateful for diabetes and what it slams us with on a daily basis. And sometimes, just celebrating makes me feel like I’m not giving proper respect to those who haven’t made it this far. That’s a lot for me to carry around. You too. So I will just say how grateful we all are for you being here after 27 years.

    09/12/13; 4:24 pm
  17. I get it. I’ve been there. I’m probably always a little bit there. And I hate that diabetes does this to all of us.

    09/12/13; 4:51 pm
  18. Kristine V. #

    Dear Kerri,

    Your blog is my savior platform. It’s where I go each day to keep my motivation up – and to be honest – seek comfort and understanding. As many other commentors have mentioned you are an inspiration, and you put those difficult feelings into words, spot on. I’ve had DT1 since 2007, and I’m now 25 years old. I though of my disease as something putting it all into perspective- life, that is. And it did too, it made me realize a lot of things I probably never would have even thought about before. My new life long disease was something positive, in some aspects. I thought that for a long period, but now today, I’ve come to realize that yes it’s positive in some ways, but it’s also become my unconsciousness, and my top one priority to handle an organ manually and every time I fail (i.e. take too much/little insulin) I’m 100% aware of it (especially with the CGM) and it could potentially be a danger to my health. These thoughts have occupied my mind a little too frequently the past year, and I’ve truly struggled to find some sort of solution to get rid of them. But it’s though, and it always will be. But the thing is as you always point out, never give up. Fuck it. I’m the ruler of this disease, I’m the queen of my body and my life.

    I’m not a quitter, none of us are. We are true heroes fighting an everlasting battle to keep our health in check every single second of the day. Every choice we make affect our physical and psychical health. It comes up in numbers, in emotions and in signals the body is sending us. It’s our job to sit in the drivers seat and have the diabetes strapped up in the back seat, tight, but not too tight.

    Thank you for sharing. You are the best.

    Lots of love <3
    Kristine V. (Norway)

    09/12/13; 5:06 pm
  19. Jenn #

    Kerri,
    Thank you for this. I’m thinking back to your post from not so long ago with all the metaphors, and thinking how many metaphors I can use to describe how awesome this is – “hit the nail on the head” “hit one out of the park” etc ;)

    But thank you. It’s perfect. And I’m glad you’re filled up again :)

    09/12/13; 5:10 pm
  20. Thank you for sharing, I know that had to be hard, but thank you.

    09/12/13; 5:38 pm
  21. Prayers for you, and all who suffer from type 1, including my dear son. Thank you for expressing what so many no doubt feel. With love.

    09/12/13; 5:40 pm
  22. Kerri, I understand very well. It’s a lot to deal with every moment of every day. Thank you for your honest words.
    I send hugs.
    Janis

    09/12/13; 5:57 pm
  23. Melody #

    Beautifully written. Thank you so much for sharing this.

    09/12/13; 6:23 pm
  24. Alexis #

    Kerri, Thank you so much for opening your heart to us. I can relate and am grateful for people like you who aren’t afraid of sharing not only the good times of the D but also some of the dark ones. Thank you!!!

    09/12/13; 6:51 pm
  25. Cherise #

    Amen.

    09/12/13; 7:01 pm
  26. I have followed your blog for a long time, but I have never commented. However, your post today, hit a nerve with me. I have been T1 for 30 years. I was diagnosed the summer before high school, at the age of 14.

    In many ways, I feel being T1 has made me a better person and given me a great life. I am a marathon runner, a long distance open water swimmer, a triathlete and a long distance hiker. I have a wonderful husband (he says he is T3…the spouse of a T1) who accepts everything associated with being married to a T1. We even recently have made a huge lifestyle change and have become full-time RVers, still having to make a living, but living our dreams.

    BUT, I have felt the same feelings of emptiness. And I have feelings of sadness too. Especially days, that no matter how hard I try, I struggle all day, either being too high or too low. Some days the fight seems insurmountable! So, thank you Kerri. For letting all us with T1 know, we are not alone.

    09/12/13; 7:08 pm
  27. Incredible post, Kerri.

    Thank you for taking us on such a ride. It’s such a conflicting thing how diabetes can make me feel so strong, yet so vulnerable, all at the same time. I feel like you painted that picture brilliantly.

    And I swear when you linked the word abyss that it was going to be something about an elevator shaft…

    09/12/13; 8:21 pm
    • Every time I look at my new cell phone, I think about how to tell that story and I just can’t. It’s too … you know. You were there. Shit got weird.

      09/12/13; 10:00 pm
  28. Leah #

    You did a really amazing job of describing the despair of depression. I am so glad that the fog lifted and that you didn’t need therapy or medication or more despair.

    09/12/13; 9:13 pm
  29. Tina #

    Thanks Kerri.

    I can definitely relate after marking my 58th anniversary last month. But with the low, terrible and not so good moments, there have been many high and happy ones, and that’s what keeps me, you and all the others who’ve replied chugging along.

    All the best.

    09/12/13; 9:21 pm
  30. Christine #

    Every time I read your blog, I feel like you’re writing my exact thoughts and feelings about my diabetes. Your writing is such a gift, to me and to the thousands of other people who read your blog. Thank you for this, and thank you for so aptly writing about the malaise that diabetes causes in so many of us.

    09/12/13; 9:56 pm
  31. <3

    09/12/13; 10:20 pm
  32. karend1 #

    47 years for me, I think I lost count. I don’t even know my D anniversary date, but pretty sure it was late summer early fall, about this time right now I believe. My depression is huge, and I think a lot of it is that non diabetics (family) don’t realize how hard the struggle is and that frustrates me big time, they have no clue. My sister does not understand why I decline so many invites to do fun things especially things that involve movement or eating, just too hard to hold steady for any length of time. And at work I refuse to talk about it as I feel that one day it could be held against me, so all coworkers do not know my daily struggle

    09/12/13; 10:52 pm
  33. Betsy #

    Thanks, this is a great post. And because of it I just realized my 20yr diaversary was this week too. I don’t (or choose not to) remember the actual date when I stumbled into Student Health brand new in my first year of college 2300 miles from home. I remembered, and then I had some peach ice cream. Hugs to all you in the DOC!

    09/12/13; 10:52 pm
  34. 1) You are awesome.

    2) I feel as if this encompasses what is going through my head well:
    “Even in the midst of our own struggles, we can offer encouragement. Even during our personal low periods, we can continue to try and be a mentor to those around us. If we are honest about what we are facing, we can offer hope to others that they are not alone.”
    -–John Wooden

    3) It is always the best to celebrate nothing and everything. Because simply appreciating each moment . . . is worth celebrating.

    4) In case I haven’t told you in awhile, I love you. ‘Cause you’re you.

    09/12/13; 10:56 pm
  35. Julie #

    Beautifully stated. 36 years here and never marked the dia-versary. The days, weeks, months and years just pile on. Take care.

    09/12/13; 11:48 pm
  36. Ilana Nayman #

    I would have eaten a piece of cake because sometimes you have to say to hell with it!

    09/13/13; 2:22 am
  37. I’ve reflected on this post now for awhile, bouncing it around my heart and head and riding a wave of varying emotions as the hours have gone on. And here it is, middle of the night, and I continue to sit in awe re-reading this. Thinking about how you so perfectly captured how I have felt and do feel so much, and (as so many have mentioned) we all pretty much feel sometimes. Thanks for sharing this. Makes me think we all need to find balance and perspective to stay above water and keep ourselves from drowning, or going too far under where we can’t appreciate the beauty around us.

    09/13/13; 3:44 am
  38. Larry K. #

    Hi Kerri,

    I commend you on how a diabetic feels at times You summed it up. I can understand how you feel. I was a runner couple of years ago and stopped for whatever reason. Now I tried toget back to it and I just cant get into it. I recently joined a class called RIPPED exercise. Just look it up on youtube Its like Zumba on steroids. It gest your heart pumping to the beat of the music and sweat like I have never done before, But you know what It was lowered my A1C number from a 8.5 to a 7.5 in 2 months. I feel great and dont have my mood cjhanges I used to have and I lost weight to. It is a better alternative insted of running and you are with a bunch of people. I thank My instructor for saving my life so to speak.
    I feel spastic at times when starting new moves but its for me and to help me struggle with diabetes. Hang in there and enjoy Chris and Birdy and look at enjoy.
    Take Care
    Larry

    09/13/13; 8:18 am
  39. Michelle #

    Thank you for writing this, and thank you for opening yourself up to the internet. You are incredibly brave and inspiring.

    09/13/13; 9:23 am
  40. Ana B. #

    Thank you for your posts, and for this posts. I am constantly reflecting on my life and emotions but rarely do i put them to paper (or screen). I don’t know many other people with diabetes, or at least any that I feel i could share feelings like these. I love reading your posts because they resonate and hit home so much. Most of them time they will bring tears to my eyes or at least to the verge. But they also, and mostly, make me happy because it reminds me that I’m not the only one feeling this way and that yes, even though it may sound cliche, life does go on.

    Thank you for saying “fuck you, diabetes!” People rarely do. And many days when everything is going wrong and you add bag sugars, constant lows, painful sites, yanked sites, etc. all a Dlifer wants to say is Fuck you diabetes!

    Thank you for writing how it’s not a blessing – even though i do know i wouldnt be as strong as i am today or who i am – were it not for this disease!

    Next year, December 2014 will be my 10 year anniversary and I was thinking about getting a tattoo to commemorate the date. Something small, on my foot, something just for me. What do you think about the idea (even if tattoos aren’t your thing)??? I would really like some insight from someone who has been through this milestone.

    Again THANK YOU kerri! Your posts are so close to home that they help me live on!

    09/13/13; 11:03 am
  41. GC #

    One day some one asked me what ti is like to deal with diabetes,I have given up the condition and what we go through every day apart from the fascist diabetic police where i go to war with from time to time,What i did was show a person one of your essays about you suffering with bad BGs,It explained it to him better than i ever could,So happy anniversary and here is to the other 26 years,

    09/13/13; 4:54 pm
  42. Ruth #

    Beautifully said. I was diagnosed with T1 about 6 months ago at age 64. I don’t know if it’s better or worse to get it this old. When I read about you long timers I honestly don’t know how you do it. On the other hand, I’m not as adaptable as I was when I was younger. It’s like my life has been turned upside down and will never be the same. I do try to find some positive aspects (I have lost weight), but it’s hard to stay positive and I’m exhausted already from trying to figure this all out every single day. My husband is not particularly supportive (tired of hearing about it every day) and my kids don’t live very close by. They say things like how well I’m coping with it, but they don’t really understand.
    I’m so grateful for the whole online community – pretty much everything I know and all the support I get has been online. Thanks.

    09/13/13; 9:20 pm
  43. Patricia #

    Thank you for this post. You have written the words that are in my head. Next Sunday will be my 14th anniversary. Next year I will have 15 years of T1D and then I’m also turning 30. That will be the moment that I have lived the same amount of time with and without T1D. Think I’m gonna bake a cake…

    09/16/13; 8:59 am
  44. This is a great post and it almost made me cry.

    Thank you for writing about your life with diabetes.Thank you for being so inspiring and thank you for bringing hope.

    And thank you for making me laugh. You truly are a great person :-)

    09/16/13; 1:53 pm
  45. Your voice is so incredibly important, Kerri. That feeling of emptiness happens for me also. It feels like holding my breath. All I can thinking about is breathing, but I am not sure how to start. Thank you for your honest tone and relatableness.

    09/16/13; 4:10 pm
  46. Kerri's mom #

    Sorry..excuse my language..but hate this FUCKING disease. No mother should worry any more about their child than necessary.

    09/17/13; 6:04 pm
  47. laura #

    Thank you so much for sharing. That’s all.

    (T1, London)

    09/18/13; 9:58 am
  48. Thanks, Kerry. As a relative newcomer to T1 and recent discoverer of the DOC it is both reassuring and confronting to hear of your experiences.

    I’m not a pretty jogger either. My mum always said I stomped like an elephant when I walked so trying to give propulsion with that lack of style is a mighty challenge. Probably why I prefer hiking as my outlet!

    09/19/13; 8:05 pm
  49. Lindsay #

    Kerri, thank you for this post. Your words definitely hit home as I approach my 25 year diabetes anniversary. I have been in a bit of an “empty” slump lately, but your post reminded me to seek out something– anything– mildly enjoyable in life and to try and pull myself out of this empty hole we call diabetes.

    10/1/13; 10:23 am
  50. I have had that same feeling and the closest I have gotten to a name is a sudden complete loss of Ego ?

    09/12/14; 1:50 am

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