I've realized that I have never given proper attribution to the person who inspired me to do this. Well, ok, there are good many people who inspire me every day to put myself out there just the way I am (and be ok with myself, which is, as we all know, tough at times), but really, two people let me know that this blog thingy is a good idea. OK, three, but the third is a collective group of people:
One= The Hub (see previous post).
Two=Kim over at Texting My Pancreas, which I highly recommend you read- if you have diabetes or not because isn't the idea of texting one's pancreas just brilliant?! Seriously, read her stuff.
Three= My family. For almost 25 years, they've been dealing with diabetes just as I have, and it's been equally tough on them, especially when I was first diagnosed at age four.
Oh, wait! There's a fourth. The first diabetes blog I started reading: Kerri's Six Until Me: a gold star read (sometimes I think we are the same person-- but not in a creepy, stalkerish way), like Kim, every day.
And five (I know, I know), my friend LL, who not only endured Information Organization (believe me, it's HARD) with me in grad school, but who is also a Type-1- er. Her blog about training for and running the Boston Marathon (with a pump!) was the first blog I ever followed. And, boy, it INSPIRED ME. And that was 2009! Clearly, it took me a long time to get in step with the 21st century.
It was Kim, who started the "You Can Do This" Project, which is totally inspiring in and of itself (see her intro video here), and Kerri's "You Can Do This" video that led me to think, "YOU CAN DO THIS, KATE BOYLAN." (Though I have not submitted a video... yet. I'll get there.) Anyway, this blogosphere meant I could add my unique voice to a chorus of many, and contribute to a collective song (or dirge, or full-fledged musical number, or whatever depending on how people with Type-1 are feeling that very moment, that very day). My highs and lows (literally) could be understood by a whole community of people I never met, but who "got it." That's a wild, wild concept.
So in addition to recommending you to follow these amazing men and women who inspire me every day as I read and think about their posts, I suppose I should tell you my diabetes story, too. 'Cause that's REALLY the reason I got into this... being diagnosed with diabetes in the first place.
Wait, first, follow (along with the ladies above, of course):
The Girl With the Portable Pancreas
Moments of Wonderful
And, please, please, please send me more blogs and communities and recommendations... please! I am still new at this and am really beginning to love this online community of (y)ours.
OK: so, here's what happened. It was Christmas, 1986. I had just turned four that October, and that September, I started pre-school at a cool, funky, Montessori school my brother and sister had attended before me. I know that at some point I got the flu, and my very sweet, rose and Ponds Cream-smelling paternal grandmother had passed away early in December. It was kind of a rough time for my family. My brother was 15. My sister was 12. They were both commuting to school in Manhattan from our native Staten Island, and my parents were worried like, all the time (as parents are wont to be), while my brother and sister were trying to assert their independence (as adolescents are wont to do). You know-- normal family stuff-- good and bad. Up and down, but mostly good. ("Mostly good," said in a Miracle Max voice.) Then I had to go and screw it up. I know I shouldn't feel this way, but I can't help but wonder, "What if I *wasn't* diagnosed? Would I be where I am today? Would my family members be who they are individually? Would we be the same family unit? Am I that important to have changed people's identities unintentionally? Would I have even met The Hub?" Gosh-- overwhelming (and in most cases, pointless) questions. I am where I am, and I am happy about that!
Back to Christmas. Christmas morning, everyone noticed how punky I was. I didn't really feel like getting out of bed or opening presents-- totally not normal for a four year-old. For weeks and weeks I was getting skinnier and skinnier, but this seemed kinda normal, since my brother and sister before me were lean green beans. I complained of thirst and used the bathroom a lot. It was New Year's Eve morning that I REALLY didn't want to get out of bed (at least in my memory), and the next thing I remember, it was nighttime (did I sleep that long?), and I was being whisked out of the house and into the family van, and away we went to the hospital. My mom slept with me that night in her floral, zip-up robe (I was totally confused-- robes were meant to be worn at HOME), and cried a lot. This scared me. Moms were not supposed to cry. I woke up in the middle of the night being poked and prodded, and it was like a movie: me, in bed. Big shining light blurring my vision. Tubes and machines. Some doctor I couldn't understand. It was DEFINITELY dystopian to my four year-old self. It was like that super freaky eye scene in Burgess' A Clockwork Orange... but of course, I had not seen or read it yet (thank goodness).
It was, at that point, New Year's Day, 1987.
I guess my parents learned over the next couple of days that my Islets of Langerhans were attacked, and my immune system could not thwart the beastly Type-1. My mom's very best and amazing friend who is an oustanding nurse performed some magic and was able to have me moved to Mt. Sinai Hospital's Pediatric Endocrinology Unit, and it was there I was treated. It was there my family learned to give injections on oranges. It was there they learned about carb-counting and weighing food (to an Irish-Italian family food was/is of utmost importance). It was there EVERYONE got their blood drawn to see if we had any kinds of genetic similarities, markers and what have you. I know I got poked and prodded a lot, and I was told to pee into a cup what seemed like every five minutes. I know I made cool beaded bracelets with other sick kids, and generally felt much, much better than I had been feeling.
Then I had to go home.
And we all had to deal. Ugh.
I had to get used to being poked and prodded MORE, meaning ALL THE TIME, and my parents had to watch over me like hawks while I finished pre-school. The pre-school teachers didn't really know how to handle me, but my parents were wonderful (and the teachers really nice and funky), and I wasn't emotionally (or physically, thank goodness) scarred. My folks miraculously secured a personal para-professional to watch over me in elementary and junior high school ("Mrs. Schuler" remains to this day a dear friend, and miracle worker). My mom and dad taught themselves and taught me every day that I could and WOULD do this, with grace and strength (literally-- they got me involved in competitive swimming almost immediately). Other family members and friends came to bat all the time, and learned along with the rest of us just what diabetes required 24/7. It was truly a collective effort, and I know now that I was (and continue to be) very blessed to have a ready-made community of support, health, and love. I wouldn't be me without them. I wouldn't be me without diabetes, gosh darnit.
But, I feel bad. I feel bad that my parents' attention was kind of pulled towards a particular direction when my brother and sister may have needed a few extra hugs. Or help. Or advice. Or an ear to listen. I feel badly that my parents had to go through any of this. Like, a trip to the beach was never going to be the same. A vacation alone would never be the same, because diabetes would never leave my side. Their sides.
I guess, like me, they wouldn't "be" them without having the ordeal of me being diagnosed. It sucks, but, what's awesome (I think) is that we all came out on the other side laughing. And that's pretty rockin'. Thank goodness for them.
I hope that they all know, and that all of you know, that I get up in the morning and face sucky numbers like 285 even after eating well and exercising, and scary 32's for no reason, and swollen ankles, and beeping pumps because I feel I can do it. And do it well. And sometimes even laugh about it; for example, like trying to put on a bra in the morning (while rushing, of course) when it gets caught on pump tubing. Or, almost dropping my pump in the toilet. Or, when I was giving myself injections, dropping my ONE vial of Lantus (I meant to take two, but grabbed three Novolog's instead) all over a Sicilian tiled floor within about fifteen minutes of being on the island, and "practicing" Italian at a Farmacia. OR, Or, or. Diabetes is a barrel of (at times) monkeys, laughs and cries.
Thank goodness I discovered this blogosphere, and have you to share it with. We can do-- and ARE DOING-- this.
PS-- Could Miracle Max invent a miracle pill for diabetes? How cool would that be? I'd trade him one for a mutton, lettuce and tomato sandwich, "where the mutton is sliced nice and lean..."