Monday, April 14, 2008

Quiet Things That No One Knows

You wouldn't know about it just to look at me. On the surface, I'm a bubbly, perky, frequently sarcastic 20-something writer. I like bright colors. I like performing my poetry for people. I like listening to indie rock, punk, and a zillion other kinds of music. I love movies. I drive a Saturn. I have a great husband, and I still sometimes develop a crush on every other guy I meet.

Some people have been surprised to find out that I have diabetes. Others have known it all along, like my friends whose parents began stocking diet sodas and low-sugar snacks, knowing I'd be coming to hang out with their kid, wanting me to just feel normal, happy and welcomed.

Sometimes, it gets tiresome having to explain to various folks what kind of diabetes I actually have, trying to sum up how I take care of myself in a one-and-a-half minute statement, but I still don't mind telling my friends. They occasionally apologize for prying, or for asking too many questions, but I am always happy to know that the people I'm closest to really care about me. They care enough to know what it is I have to go through every day. They want to know what to do if there's an emergency, because usually, the only diabetes most people know about, at least in my personal experience, is a relative's Type 2. They are surprised and intrigued to know how Type 1 is so much different.

No, I can't be cured by eating cinnamon-coated broccoli. No, I can't be cured by losing weight and exercising, but that never hurts. And really, no diabetic can ever be fully "cured" anyway, at least not now. Drugs won't make my pancreas work. I'm a different breed.

I'd never heard of diabetes when I was diagnosed in 1990. I was 8 years old, less than two months from starting 3rd grade. I don't really remember much about my diagnosis. I know I was horribly sick, in full-blown DKA, and my veins were collapsed so they had to put my IV in by making an incision in my ankle. I still have the one-inch scar there to prove it. I remember everyone sending me balloons and get-well-soon gifts. I remember receiving stuffed animals, a snow globe, sets of markers to color with. I remember being woken up constantly for a nurse to take some blood or give me a finger stick--some of the nurses had worked with my aunt or my grandmother in the past, and would chat with me, while others would just tell me what a brave little solider I was. I remember spending one morning hyperventilating because something was wrong with my potassium levels, and how scared I was at that moment, because no one seemed to be able to explain to me what was going on.

I think that lack of understanding was the most frustrating part of my diagnosis. There are two distinct memories I have from that time. One was being pushed in my wheelchair up and down a set of ramps downstairs at the hospital, which I thought was just the most fun thing I could possibly do. The other, was one day, my mom was sitting at my bedside, and I just remember her crying and crying. I said to her, thinking I was so sage in my 8-year-old wisdom, "Mom, I'm still here. You're crying like somebody died."

She misheard me, and responded, with even MORE tears in her eyes, "No, honey, you're not going to die."

I realized now that I cannot even begin to imagine what my Mom was going through then. I was young enough and bright enough that it was easy for me to accept my diagnosis: you have diabetes, you're going to do all these strange, foreign and sometimes painful things if you want to feel good, be healthy, and live a long life. I was sold, and I knew I was lucky. I was fortunate enough to have a condition that would allow me to keep living, just so long as I took care of myself. I was frustrated one day because an older person asked me if I had "the sugar". What the? was all I could think. I became quickly acquainted with the concepts of forbidden foods, and I could read a food label faster than any other elementary school kid that I knew. I knew, even at an early age, that most people didn't understand diabetes very well. When you were young, at least back then, most people were correct to assume that you needed shots.

My doubts, anger and frustration with my own diabetes didn't come until much later, and I am still dealing with them now. They are the reasons why I took a chance on a different company's insulin pump. They are the reasons why I sought out the services of a really great, proactive CDE. They are sometimes the reasons why I need to take anti-depressants. Now that I'm older, I realize how frustrating explaining one's diabetes can be, especially when type 2 gets all the publicity, and the type 1 publicity features lots of cute little kids, because let's face it, it's the combo of their adorable mugs and their grown-up bravery that draws the donations.

I don't want diabetes to always be a part of my life. I don't want it to have to be a part of anyone's life. I know how to live with it, but I want to know what it's like to live without it as an adult. I remember a few short years of my life without checking my glucose, or having an endocrinologist, or taking insulin, but I don't always count on those things ever happening. I want to see a cure, or at least a closed-loop system in my lifetime.

My name is Hannah. I have type 1 diabetes, and I want others out there to know that it's not always easy. That's why I write this blog--to share all aspects of my life with diabetes, to know that I'm not alone by sharing in a community, and to give hope to those anonymous lurker parents and kids out there. We can live really great, healthy lives with Type 1 Diabetes.

We are all just waiting for the day when we can simply live great, healthy lives.

13 comments:

  1. Oh Hannah - this is a beautiful post. Thank you so much for writing this.

    ReplyDelete
  2. Thanks for sharing this. It is hard to read some of these posts, but I know that speaking the hard words is the right thing to do, because without people willing to tell the truth, the seriousness of this disease gets hidden.

    We can live well with diabetes, but you are so very right in saying that we're all waiting for the day when we can live well without it.

    ReplyDelete
  3. Hi Hannah- You rock...this is a great post.

    ReplyDelete
  4. "Cinnamon-coated broccoli"--eew! If only it were cheese-coated...now we're talking...yum!

    Seriously, though, I too would love to be a non-PWD adult(:-) Great post.

    ReplyDelete
  5. Crud I just left a comment but I don't know if it stuck so.

    I just want to say that this post really hit home, thank you for that.

    ReplyDelete
  6. A wonderful post. Thank you for sharing this.

    ReplyDelete
  7. That was great Hannah.

    ReplyDelete
  8. Hannah -
    Wonderfully put...YOU ROCK.
    k2

    ReplyDelete
  9. Hannah this is marvelous. I definitely feel the same... and Beth's definitely right it is hard to read.. But thank you for posting it.

    Happy T1 Day!

    ReplyDelete
  10. thank you for the honesty. it will surely help someone get 'it' at least a little bit.

    ReplyDelete
  11. Your comments about growing up with diabetes really hit me. I didn't grow up with this, but when I read about you and others I am continually amazed by your optimism and strength.

    ReplyDelete
  12. thanks for this post, we seemed to be thinking a lot of the same things- and I was diagnosed at 8 too!

    ReplyDelete
  13. I was diagnosed at 7 so I don't remember very much before diabetes either. The older I get, the less I remember about it. My diagnosis is a little foggy, too. I do know that I didn't understand what was happening & that was a horrible feeling. Thanks for writing about this. It really hit home. :)

    ReplyDelete

Remember to use your commenting powers for good, not evil. Excelsior!