This Easter marked my 20th "anniversary" of being diagnosed with type 1 diabetes. The actual date of my diagnosis was around March 25th, but I always associate my diabetes diagnosis with Easter, since I was in the hospital for a week during Easter break. What follows are some things I recall.
I was just a little girl.
As a little girl, I didn't even miss a day of school, thanks to the good timing of my disease [insert sarcastic smirk here]. Two decades later I have a fancy new insulin pump, five second readings of glucose levels and a top notch endocrinologist who is the Chief of Medicine at a world-class teaching hospital, but I still, at times, feel lost.
I don't remember much about the time surrounding my diagnosis twenty years ago, except feeling sad that I couldn't eat the candy in my Easter basket. I remember going to see my nice pediatrician who must've taken one glucose test and known the inevitable. What I remember most about that visit is how my hand reached out to take a piece of candy from the big bin he had in the hallway, like I always did, but being stopped. I knew I couldn't have that candy anymore. I think I probably cried more about that and the fear of going to Wisconsin's Children's Hospital than I did about my diagnosis, since I didn't really understand what was happening or going to happen to me and my life as I knew it.
Little memories surface.
I remember being scared and needing my Bubba, my stuffed dog and Christmas, my Koala bear, with me. I remember my Uncle Randy giving me a panda bear stuffed animal in the hospital, which I loved, since it had a mama bear hugging a baby bear, which came undo thanks to velcro paws. I remember the shiny red box my mom gave me, which I'd keep on the hospital bed table, which swung around when it was time to eat. I remember the box had a mirror inside and when I opened it up, I could see myself. I thought that was so cool, along with the magnetic closure. I remember my mom, who spent years working in the hospital, taking me on a wheelchair ride down to the bowels of the hospital--the underground passageways and even zooming past the exit for the morgue, I believe, in my hijacked wheelchair. I remember giving an orange a shot, to practice, and that my parents gave me my shots for quite some time. I knew the difference between diabetes and diarrhea.
My twin sister already had t1 diabetes, so I was semi-familiar with shots and insulin and fingerpricks, but it's always different when you have to do it yourself. My sister was hospitalized three years earlier, and I, at the young age of eight, misunderstood my sister's diagnosis. She was hospitalized after a bad blatter infection, and I told her friends and all the girls on the monkey bars and jungle gym that my sister was in the hospital for diarrhea. I thought she was. I wish it were only that.
Most memories are not my own.
My brother remembers that while I was in the hospital, he finally got to play the Super Mario Brothers hand-held pre-GameBoy game that I used to hog, which was a combination of Mario-Kart and Donkey Kong. Does anyone remember this game or this game system that was portable? I can't remember it.It must've been post-Atari Nintendo world pre-Game Boy. Funny the little details one recalls.
Mostly, I remember bits and pieces of my hospital stay, but not so much about things before I was diagnosed. Surely, I was feeling awful, with extreme hyperglycemia, constant trips to the bathroom, excessive thirst and extreme weight loss combined with an inexhaustable hunger, but I can't say I have vivid recall of that. Most of my memories come from others.
Advice as a 20 Year Veteran
Today I try to think of what I'd say to that little girl, only eleven years old, about to finish her sixth grade class, graduate from elementary school and face the dreaded middle school years where body image issues and awkwardness are king. The thing is, despite no major complications twenty years later, I find the complications from diabetes come in other forms. And I find that the more I know, the more I learn about my own diabetes and that of others, the less confident I am in the notion (I'd call it an illusion) that I control my diabetes. I know I control certain aspects of my management of the disease, but I'm not foolish enough to think that I control it. I control the input and tweaks and parts of the environment in which I oh so kindly host my diabetes, but there are many things I don't understand and don't have a handle on, all these years later.
Having grown up in a time, like Kerri describes, where glucose testing was at best a guessing game (180 and 240 were my standard recording numbers when high)
I remember well this chart Kerri found. It was on the side of every bottle of test strips. I was rarely between the 80 and 120 mark in those days, especially after meals. You can see that it was hard to ever know where you really were, bloodsugar wise. I also was on a meal plan with "exchanges," for those of you who remember those, and didn't hear of carbs until quite recently. It was a different time back then, and I am so grateful for my insulin pump and the ugraded testing supplies and the promise of CGMS (which I don't want until it's done better) and things like the Artificial Pancreas Project and Dr. Faustman's research, but the fact remains that diabetes management and life with this disease isn't easy, no matter what tools you have. And the emotional side of diabetes is so rarely talked about or mentioned. Optimists and pessimists share the same burden, and there are days that, no matter how many half-full glasses of Coke Zero or Diet Pepsi I spy, I still feel frustrated and sad and yes, at times depressed, by the toll living with diabetes takes on me personally.
I think I'd simply tell that little girl to love herself and know that she is whole and wonderful as she is. She is not broken or abnormal or "less than." I'd tell her it's not her fault. I'd tell her to ask for help whenever she thinks she needs it. I'd tell her to be proud of herself, always. I'd tell her I believe in her. I'd encourage her not to be shy about being who she is. I'd tell her how much I love her and how proud I am of all she is and how well she takes care of the many things that have been heaped upon her shoulders at such a young age. I'd tell her she's beautiful and brave and perfect just the way she is. With a new decade of diabetes, come a new hairstyle--the bangs a throwback to my younger days.
What I Wouldn't Say
I wouldn't tell that little girl about your grandma with the one foot or your great-uncle whose leg was amputated. I wouldn't scare her with horror stories she'll never be able to get out of the back of her mind. I'd leave out comments to her about just sucking it up and to just be happy to be alive, nor would I remind her that at least she doesn't have cancer or leukemia. I wouldn't tell her there is anything she can't do. I wouldn't let her know what I know now--that she will become a different person that she would've otherwise, even though I know that person now and she's pretty great. She's bright and funny and beautiful, inside and out. She's gentle and kind, but not afraid to stand her ground. She's a world-traveler and multi-lingual, and a talented writer and poet and teacher. I know the 31 year old woman now is stronger and braver and more empathetic than she would've been without this disease, and that she has blossomed in some areas not despite diabetes, but because of it.But I wouldn't tell her all that. I also know she's tired, sometimes, and faces moments in life she'd rather skip, but the fact of the matter is, twenty years later, we all do. We grow a lot in twenty-years, and I'm no exception. I am not glad I have diabetes. I am not grateful for this disease, but I do know that it has gifts to offer, if I'm willing to take them. Cheesy as it sounds, I know that while I may have diabetes, diabetes will never have me.
My Book is Coming Out
I had intended on finishing the book I'm working on before this 20th anniversary, but I'm not there yet. I'm almost done, but had to put in on hold to focus on my MFA and my new job as Executive Director of the Ray of Hope Foundation for Diabetes. The book is coming, though, and I am grateful to Birdie, whose own book inspired mine. The book is called What Counts: Reflections on Twenty Years with Diabetes, and I'm publishing it through Blurb. It's a heart-felt reflection of the things that count when it comes to life with diabetes, and features my writing and my photographs. I hope you'll check it out when it's finished later this month.
I've also begun writing a poem to commemorate my 20th d-versary. Despite being a writer, I've not written about my diabetes, except for in this column and my other blog, which you should periodically check out if you enjoy my writing. It can be found at amyliawrites.com and includes the archives from my earlier writings on diabetes from Taiwan. I began crafting a poem, but have had a hard time picking it up to work on it. I think I'm blocking because some part of me doesn't want to give any more of my spirit to diabetes, even though it's certainly a worthy endeavor. I will finish it this week and post it here. After my initial diagnosis, I wrote a rhyme-y poem about my diagnosis of diabetes which was published in Diabetes Forecast back in 1989. I've looked through my files to try and find that poem, since I think it's quite telling and not so bad for having been written by an eleven year old girl who hadn't read a lick of proper poetry in her life, but I can't find it. If anyone knows how I can get ahold of that poem, please let me know. I'm not sure which month in 1989 it was published, but it had to be between April and December, 1989 and would've been published under my name back then, Amy Bergholz. I'd love to have a copy of it. Please note my current poem is sans rhyming.
Thanks for sharing in this milestone with me. I'd like to ask for your feedback in the form of comments. Imagine you are talking either to that little eleven year old girl who got diabetes twenty long years ago, or imagine you are talking to yourself back when you were diagnosed (child or adult). What would you tell that little girl or your earlier self based on what you know now and all you've been through with diabetes and life? Share your thoughts by leaving a comment below. xoxo