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Diabetes Back in the Day.

Last night, I found a box of old diaries.  I've been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content. 

It's strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I'm not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a "baby." But Butthead said he couldn't do it because he was "diatetic."  The teacher reprimanded him by saying, "That's DIABETIC, and yes you can do this."  I'm not exactly sure why, but that comment bothered me.  Alot.  I think it's because I'm so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about 'HandyMan' on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said "diabetes" correctly. 

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn't help but overhear.  She said, "As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff."  Am I a burden to my family?  Do they resent my diabetes?  Do I have a "normal" life? 

This isn't to call my mother out for saying this.  I've heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break. 

Funny - I've always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that's confusing because I say I don't want to be treated differently at the same time.  It's weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I'm going nuts.  At least at CBC I'm not the only one who feels that way.  If I tried explaining that to my friends, they'd look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  :)

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It's a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I'm not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

(And some embarrassing diary snapshots coming soon ... once I get the guts!)

Comments

How wonderful. My heart just aches cause I know what you felt. I lived it too.

But it's nice to know that even when I was alone w/ my diabetes, there were others that were going through it too.

It's funny how alike many of us are. Some of those things I could have written. Of course you would not have been able to read it but the feelings you had I had. I think, like you said, many of us did.

Thanks for sharing.

Very insightful...I need to dig up some of my old journals, too! Thank you for sharing!

Thank you for sharing these, as heart-wrenching as they are. (I remember that Beavis & Butthead episode, both before and after I met Greg. yeah, we own every episode on DVD.)

Just started following you on Twitter and am now starting to read your blog. I was diagnosed with type 1 in May 2007 (I was 24). There is no family history of diabetes and this was like a slap to the face somehow. I am now learning about the diabetes communities out there. Thank you for talking about it and letting others know it's ok to be diabetic. Also, what are your favorite diabetes blogs and forums? Thanks again!

Great post Kerri! Thanks for sharing.

Wow Kerri - these old snippets are very touching actually.

Did you feel some emotions coming up as you read these? I know I did.

So sad...

My parents gave me old journals when they moved a few years back, and like in yours there was hardly any mention of diabetes. I think that's a good sign, shows it didn't really have all that much influence in our lives.

I did find an entry from when I was 7, talking about getting low in front of my grandparents and how embarrassing it was, and another from when I was 15 about a boy I was dating seeing my necklace while he was...down there...and stopping to ask me questions before continuing. How I'd just brushed it off because I'd wanted him to see me as normal at that point. At the end of this I wrote "Sometimes, I just want to be able to forget."

So true, even now...

I was diagnosed as a Type 1 later in life (36) but I have a great deal of compassion for kids with it. I can't even imagine how kids must feel! I appreciated your insight with your journals. I know I try to act like I'm normal and I'm 48! But then the Big D wallops me one way or another to remind me it's still there. Really enjoy your blog, Kerri!

Slam dunk again. Though I never got to go to diabetes camp until I was 25 (as a counselor), I completely identified with you. And the comment you heard your mom say...my mom said something similar. When I was diagnosed and in the process of being admitted to the hospital, she turned to me and said, "Wow. Someone's really going to have to love you to marry you now." That comment still hurts--though now I think I understood what she meant. She was overwhelmed by the enormity of it all. It's so much to take on. And I want a break from it too. Sometimes, I do take a break. I eat whatever I want and ignore the rules--but then I pay for that choice, so I never really get a break. And I NEVER get a break from thinking about it.

Anyway...thanks for the post. And for the blog. It makes me feel not-so-alone. Maybe someday I'll start my own blog. I keep thinking about it...

Kerri: What a great entry! Teaching middle school kids, I hear comments and reflections all the time like yours while in middle school. It's helped me to see a middle school or teen version of being a diabetic and be more sensitive, since all I want to do is shout out to the world about mine (developing T2 as an adult is certainly different than T1 as a child). Thanks for your openness!

Kerri~ Thanks SO much for sharing that bit of your childhood. My main reason for starting my blog was to vent my feelings and keep a diary of daily life as a parent dealing with diabetes. I'd love to write the entries but this day in time it just seems easier and faster to type them. Years down the road I someday hope to give Kacey a copy of the blog that I've backed up. I also encouraged her to start her own blog. Even though she is only 9, I figured it would do her some good to write how she felt and things that are important to her. It also gives her experience with typing (which she needs in school) and also with her "writing" and "thinking" skills. If she keeps it up, then she'll look back and laugh one day :)

I don't know what you remember about your first kiss, but I remember mine. You should too - you were part of it. (Kindergarten, Mrs. Carpenter, I got sent out into the hall?)

well I dont know what it is like for a kids to be type 1 but have been for the last nine years and that is a trial went back and read my old paper journals too and wow some of the things i wrote amazed me thanks for the great blog dear .Cat

Thanks for letting me see a little bit into the mind and heart of a kid with diabetes. I have a feeling it will help me with Noah.

There was wisdom and eloquence in your writing even in your early teens!! Thanks for sharing, Kerri. Lots of food for thought for this parent of a type 1 child. I'm so glad you have found your much needed support group... and I'm thankful to be part of it. (((hugs)))

Kerri,
As a mom of a child with D I really appreciate this entry. It gave me insight into my child's world that I may have never had otherwise. Thanks!

Have you heard about Sarah Brown's Cringe project and the resulting book? It's amazing and painful. :)

Man, that snapshot of the paper.....takes me back. I remember when i was about 11 or 12 (2 years after diagnosis) i'd sit up and just be paralyzed in fear thinking about having my feet cut off, dying in a few years, having my organs taken out of me from "complications", just beating myself up for not being "in control" (which i understood to be all perfect numbers all the time, no doctors ever told me differently). It is a heavy load for kids.

I shouldn't be surprised, but I am very impressed at how good your writing was at that age. If I had kept a journal when I was 14, it would have read something like "Dude, this sucks." Of course, I'm almost 29 and probably wouldn't do much better now. :)

This makes my heart hurt. Especially since, at 40, the feelings are still very similar.
Hugs to you from just one member of your diabetic family. xo

I still remember laying in the hospital bed at diagnosis (at 22) and hearing my parents fight about who was going to stay with me and who would take better care of me - AT 22! I also remember my mom's tears.

I guess it's tough on our parents at any age :(

wow,this really hits home. As a mom of a 13 year old boy with type1 for just over a year now, my heart aches. I always wonder when and if it will ever get better, he doesn't like to say diabetes out loud, he doesn't want it to be who he is... I can tell it is such a struggle for him sometimes. I am always mindful of what I say, I just wish he could find an outlet for his feelings. I know he struggles from time to time, I just wish it were me and not him. I love your blog and appreciate you insight...

Kerri...."If I want to live..." so touching. And the same feeling now, for me anyway. We live with it every day.
If I want to live.
I want to go back and give my kidself a hug, and yours, too. Even with a supportive family, it still felt like a little bit of alone.

It's funny you talk about diabetes in school. I'm 24 and in law school, and I have type 1. My professor for evidence was going over hypothetical crime cases down my row, using run of the mill examples (drug possessions, robberies, etc). When he got to me, the example he used was "suppose X kills his wife by injecting her with insulin." I stuttered, turned bright red and stammered, "oh, uh insulin?" He responded, "yeah, you know, insulin?" like I neither knew insulin or the evidence principle we were discussing. I just had to laugh at the odds of getting that question!

Although I was diagnosed T1 when I was 20, I definitely can relate to this post.

Thanks to you, you inspired me to create a blog of my own! http://internalsweetness.blogspot.com/

Keep this up Kerri - I know your blog is making a difference. It sure helped me.

I find it pretty awesome that you just managed to sum up so many of the things I feel towards diabetes a lot of the time. I guess we're all much more alike in this than we would imagine.

Thanks, as always, for sharing your life with us. :)

Great post! Brought back many memories. DX T1 1974 @ age 14. I remember not being allowed to have any negative emotions about being diabetic. The common thought was that I "should feel lucky", "it could be worse", etc. Why did it have to be compared to something else? Couldn't it just be considered bad enough on it's own?

I agree a positive attitude is very helpful....but not being able to acknowledge how tough it was/is was so stiffling!

This is beautiful, honey. You have obviously always been a wonderful writer!!!

that list made me cry. i felt the same way as a kid and probably wrote a similar list somewhere. it makes me very sad. but man, we're resilient, eh?

Sara, that's so true.

I've been having a lot of problems overnight lately, and as such, have been complaining to my mother. We were discussing the idea -- since I don't have a CGMS -- of getting up every hour to check. She helpfully suggested that she drive to my place -- about seven hours from where she lives -- to do the checks for me.

I'll be 30 in a month. I think that parental instinct never goes away.

Kerri, I love what you share, and I am sad that any child has to go through what you did. I am so happy to have support of the d community, arn't you. The list just about killed me over. How precious.

I don't have any similar experiences with diabetes - at 17 I was really an adult- but as a person who grew up with two invisible disabilities, I can think about what I did and didn't write about in my journals and also about how my parents did and do see me as a burden.
My journals didn't say much about my disabilities when I was younger even though I thought about them a lot of the time because I used my journals to escape and as often as not they were escapist tales. I was intensely ashamed of what I couldn't do. In my journals I wrote stories about people who could overcome what I couldn't. Even though I never explicitly mention my disabilties, they're very much there in the intensity of my desire to escape them.

It is lonely and guilt was big for me too. Life is tough for kids and a kid with diabetes has a lot to handle. It made it easier when I was 8 meeting other kids with diabetes and it helps even now to know that I wasn't weird for feeling guilt and hyper-responsible. It's a heavy burden at times. I love that you wrote so you can look back and remember.

I absolutely adore CBC! I'm so glad you had camp to help you wade through life with diabetes. It was such an awesome place and experience for me :D

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