Thursday, December 29, 2005


It is testing and shot time again. I can feel the fear and anger rising in me, bubbling up in my belly, my heart, my throat. My mind races, schemes, claws at ways to run and hide, to escape. My mother gathers up the supplies -- bottle of chemstrips, lancet and lancet device, insulin-filled syringe. And she gathers her strength; this never gets easier.

She calls me to the kitchen. I tell her I'm busy with something in my room. She tells me I need to come and be tested, come and get my insulin. "I don't want to." I whine. The tears are brimming between my eyelids. "I don't want to." I repeat, with emphasis.

"You must. Now, please, come down here." My mother has learned that if she comes to me, I am liable to run away, she'll have to corner me, maybe fight me. So, she starts the testing and shot process thirty minutes before it needs to be done, using the time to coax, cajole, bribe, beg.

Five times a day, we test. Four times a day I get my shot. I know my mother secretly thanks God that one of those shots happens in the nurse's office at school. For some reason, I have accepted that there is no running and hiding, no delaying, at school. I reserve my protests for the process to our home.

I'm not coming this time. I shout that I've decided not to eat dinner, so I don't need my shot. I sit on my bed, with my knees bent, hugging my legs to my body, skillfully wrapping my eight year old fingers into and around each other, hiding the sides and tops so that there is no way a lancet or device will reach them. "I hate this and I need a break. I hate this and I need a break. I hate this and I need a break." I repeat quietly.

I hear my mother on the steps. I hear her take a long, heavy breath as she comes up them. She opens the door to my bedroom. She looks tired, and I can tell she's been crying again. She sits on the bed and says. "I don't want to fight today. I know this is hard. I'm sorry. But I really don't want to fight today."

"Well, I don't want to have diabetes." The anger that has been bubbling streaks through the words as they come from my mouth, I watch them slice into my mother. She winces.

"I know. But you have it. And I can't let you get sick. It's that simple." She says. She reaches for one of my hands.

I tighten my grip, hiding more of my skin, and start yelling. Not yelling really, screaming. Screaming as if my mother, who has never shown me anything but love, is trying to kill me. My anger and grief feed my strength, I rip my arm away, lie on my back, and bury both of my hands beneath me. "It's not simple." I scream.

I cry as my mother straddles me, one leg on either side of my thighs and tries to reason with me. "Please give me a hand, Nicole, please." She takes my left arm by the elbow and pulls, working to free my hand from behind my back. "No." I fight back. We're both sweating and I'm crying.

After ten minutes, I have kicked my mother and slapped away the lancet device three times. I have screamed that I hate her and that I know she doesn't love me. And my mother, she hasn't given up.

She finally frees a hand and successfully gets a blood drop. In a moment, my bloodsugar reading is complete. And we work on my shot.

There is more wrestling, more anger, more screaming. My mother gets poked with the syringe in the struggle. My exhaustion after 40 minutes of fighting is what saves us this time. I dissolve, sobbing and too tired to swing or kick. My mother quickly wipes my thigh with alcohol and gives my shot. Then she wraps her arms around me, lying beside me on my bed, wiping the tears from my face and pushing my hair from my eyes.

This was by no means a daily ritual, but there were days during the first year after my diagnosis, that my mother had to fight me, had to hear that I hated her, had to watch me scream and cry, as she struggled to ensure that I got everything that I needed to stay healthy. My father endured some of the same.

At a year after my diagnosis, my parents took me to the Clara Barton Camp. That changed everything. By the time I left CBC after a family weekend program, I was not only NOT fighting testing or shots, I was doing both myself. My mother credits CBC with saving me -- and saving her and our family life. I credit CBC with showing me how strong I could be, assuring me that I wasn't alone, and helping me to stop feeling so angry and start enjoying all of the things in my life that had nothing to do with and were not affected by my diabetes.

I am thankful during this Holiday season.

Thankful for my mother, who showed the courage and strength of a mythic warrior and whose gift of love has gone unmatched by any other in my life. And thankful to the Clara Barton Camp -- that gave me courage and strength to match my mother's and helped me to fathom the depth of her love.

Tuesday, December 27, 2005


I've been tagged by Kerri. Here are five random facts about me... Since I'm new to the OC, I'm not going to tag anyone on this one; but rest assured, as I get to know you all better, I'll be a-tagging you...

1. I'm a mad punk rock fan. I love the Ramones, Social Distortion, Rancid, X, MXPX, NOFX, etc... I'm also a huge fan of local music -- in part, because my boyfriend plays in a local rock band called The McGunks and in part because there's a huge number of talented, fun, and cool bands that live, work, and play in and around Boston and Providence.

2. I'm a bit of a slob. I can't keep myself organized -- it's sort of pathetic. Amazingly, the only piece of my life that my sloppiness doesn't effect is my diabetes care. Also -- it's not that everything's a mess and I can't find anything; it's that I have lots of messes around me, but *I* know where everything is.

3. I carry a dictionary around with me pretty much everywhere I go. My love of language makes me somewhat compulsive. I can't stand to not know what something means -- and when I need to know what something means, the need is immediate -- I don't like to wait around.

4. I'm a clothes-hound. I love fashion. If I had the body and the money, I'd wear haute-couture ALL THE TIME... I love fabric and textures and buttons and shoes and hats. I live by the motto "We're all born naked. The rest is costume -- and costume is fabulous..."

5. I'm not the best driver in the World. I don't really like driving, for one thing. For another, there are OTHER people on the road -- and they are always in my way, really in my way. I like to go fast and I hate being stuck behind what my boyfriend and I refer to as "turtles." Also, there are far too many "orange" lights that I should be able to boogie right through, but that I end up having to stop at because the people in front of me like to follow the rules...

For today, these facts and tomorrow a real post.

Sunday, December 18, 2005

Landmines... Averted... Sort of.

What a great time we had at the Holiday Party last night. We met some nice folks, I got to see good friends that I don't see often, and I pretty much averted any major BS disasters.

By the time we arrived, I had decided that my course of action would be to get the most information I could about the food and make a carb/sugar/fat estimate from there and that I would avoid those oh-so-innocent sounding cocktails. I talked with our hostess, Sheri, before digging in to the latkes... I thought 15 carbs for each given the ingredients, with the bolus slightly extended because they're fried in oil. I had four, plus some shrimp cocktail, a few bacon-wrapped scallops (mmm....) and two small pretzel sticks dipped in semi-sweet chocolate and caramel (carb/sugar estimate, 15 grams a piece with 6 grams of sugar...) I ate at around 8:30. Pre-'meal' test at 123. After bolusing, I didn't think much about it at all, confident I had taken a smart tactical approach.

As we were packing up to leave at 10:45, I retested. I was feeling slightly dizzy -- but I thought I might just be tired. Bloodsugar (drum roll, please....) 62. Ooooo.... Overshot by a few hairs. Sheri -- who is nothing less than wonderful -- got me some orange juice. Alrighty then. At 15 minutes later, wth my bloodsugar at 78, Bob and I climbed into the car and trekked home.

Another science experiment I would have probably gotten about a C- on if I were being graded. But, I tell you, internally, I give myself a B, maybe even a B+. I didn't not enjoy myself, I didn't not have any of the delicious food spread out before me... I took a risk. And I came pretty close to succeeding. Better yet, I have valuable information that I can use next time around.

Yeah, I give myself a B with the words "Nice Job!" penned in red ink next to the grade.

Saturday, December 17, 2005

Holiday Landmines

So, today I've been thinking about the Holidays. Mainly, because tonight we attend another Holiday affair centered around food and drinks. In this case, around latkes (Potato pancakes = Carbs galore.) and cocktails (How does that word manage to sound so harmless?).

Over the past year, I have successfully stopped drinking almost altogether. I may, on rare occassions, have one or two drinks, but I'm not having drinks every weekend as I did for awhile in my twenties. I have also started an exercise program. And, I have managed to consistently achieve A1Cs in the low to mid 5s. Two years ago, my A1Cs were mostly between 6 and 7. As you can imagine, keeping the A1C in the 5s has taken a good deal of testing, recording, and tracking of bloodsugars and patterns and a good deal of not eating foods that I might like to consume more often than I do. Well, here come the Holidays and the landmines.

I like cookies, and cakes, and pie, and I like a good hearty meal. But my enjoyment of these things is often hampered when I wonder - compusively - what kind of messy bloodsugar I'll be dealing with in two hours.

I've come up with some strategies for bolusing that seem to work fairly well -- most of the time. But there are times when my body just doesn't cooperate; when I eat the same things, give the same insulin, have the same amount of stress, activity, etc -- and my bloodsugar does two drastically different things. And, there are so many different strategies around my eating, it's hard to keep them straight. Cake and cookies for me, require careful bolusing of both carbs and a percentage of the sugars contained in them. Fatty meals require a combination bolus -- with the amount of the bolus given up front vascillating, depending on what exactly the food is. A drink or two require bolusing for only a percentage of the sugars contained in them.

Damn it, sometimes I just want to eat a cookie with frosting on it and candy canes and have a white russian or a strawberry daquiri -- and not have to worry about counting and calculating and testing and retesting.

The landmines are here, though, and they must be dealt with. I've given up on just trying to "estimate" the number of carbs and sugars in things. I usually try to email or phone our host(s) ahead of time and talk with them about the food and drinks we'll be having -- that way, I'm not in the bathroom with my Calorie King book trying -- usually in vein -- to figure out how to bolus for what I'm eating. If the hosts are not close friends or if it's a function that doesn't offer the option of calling ahead, I simply try to stick with food that I'm familiar with carb/sugar/fat counts for or I eat something small ahead of time and nibble while I'm there.

I love the call ahead strategy. I used it at Thanksgiving this year. Easy enough -- we were eating at my mom's house. I thought about what I would eat ahead of time and looked everything up. I had a strategy going in. I sat down to my carefully planned dinner, ate, bolused half way through meal time, ate some more, I even had a piece of cake. And I was actually able to enjoy my meal. I felt comfortable that I wouldn't be dealing with a 250+ BS in the hours after it. My highest sugar that day was 143 and I didn't drop below 79. Not a bad day, not bad at all.

But tonight's holiday party is not a "call ahead" sort of deal; I don't want to be a bother. I have looked up latkes on the internet and not been able to get any sort of accurate estimate of carbs/sugars/fat in them. So, I have a few choices. Revert to estimating and deal with the consequences, use the one carb/sugar/fat count I was able to find for latkes and hope it's close to or on the money, or not eat latkes -- sticking with the things I know. I haven't decided what I'll do yet.

I guess the point of this post is not necessarily to get advice or answers -- though I welcome either. The point is that I know we're all navigating our own Holiday minefields. The greatest challenges with diabetes for me are these sorts of choices. I know what the 'best' course of action in terms of bloodsugar would be, but I'm not sure it's the 'best' course of action for my mental state, for my enjoyment. No matter what I do, I'll be making a selfish choice -- serving my diabetes well or serving my own needs for physical and mental enjoyment and satisfaction. The Holidays are really one of the only times of the year when I think... "Can we just find a cure for this already?" Because I grow weary of quandries like this one.

What are your landmines? I know you must have some.

Thursday, December 15, 2005

Something Different

So, I thought tonight I'd take a break from diabetes-related writing and do something a little different.

This one, I'll call "The High Dive..."

I could feel my heart beating. I could feel it everywhere. My fingers and toes pulsed, the rhythmic beat occupied my throat, I thought my eyes would leave my head with each throb. I looked up at the white ladder, climbing into the summer sky. I looked at the pool and at the shadow of the high-dive that danced on its surface. The sun was just starting to set, an orangey wafer dipping into the pink-yellow west.

It was a perfect day. In my ten year old mind, it was the only day that would ever matter. I had spent most of this summer here at our town's public swimming pool. The sunny, humid days had left their mark - my skin was freckled and a little peely, my hair shot through with streaks of red-gold. I had decided that this was the summer I would start training for the Olympics. Instead of frolicing with the other kids in the shallow-end of the pool, I chose to swim laps in the deep-end. Lots of laps. I'd leave the pool pruney and exhausted at the end of each day, whispering to myself "It'll be worth it when you win a medal..."

The thing was, I knew I might not become an Olympic swimmer. So, I had a Plan B. If swimming didn't work out -- I was going to be an Olympic diver.

Our public pool had two diving boards -- a low dive, set about three feet above the pool's surface and a high dive, set about ten or twelve feet above the surface. My plan to become a diver good enough to compete with the best in the world was a simple one. Step one -- step onto a diving board. Any diving board. I took that step on day one at the pool. I stepped out onto the low dive, and I walked all the way to the end. Then I walked back and right down the ladder onto the side of the pool, petrified. The idea of jumping head first into anything was just too scary. But I knew I had to do it, if I was going to have a Plan B.

On day two, I ventured again to the end of the board. I was afraid, but not as afraid as I'd been the day before. I held my nose, and jumped into the water -- feet first. OK. Step one, check.

My next goal was to actually dive off of the board. It took me a month to even try. And that first dive wasn't exactly swanish, it was more walrushish. But I was pretty proud of myself.

I decided that in order to have a viable Plan B, I would need to put my swimming on hold and really dig in with this diving thing. So I did. I dove and dove and dove, I swam some, but mostly, I dove. Once, I even climbed to the top of the high dive board -- then I climbed right back down again. The line of divers waiting at the base of the ladder weren't happy. Not happy at all. The next day, following the same pattern I'd followed with the low dive, I made it to the end of the board and jumped off, feet first.

"Well, that wasn't so hard now, was it?" I thought to myself.

With three weeks left in the summer, I had to work on my final step -- really facing the high dive. I knew an Olympic diver had to be able to dive -- not just jump -- from boards higher than three feet from the water. Each day of those three weeks, I climbed the ladder over and over, contemplated a dive -- and without fail, I jumped off of the end of that board feet first.

It came down to that last day -- near sunset, no less. That last day of the summer and my heart was beating as it never had before.

Sweating and shaking and queezy, I climbed the white-painted metal rungs, counting each one as my right foot hit it, then my left. Onto the board, its warm, sand-papery top tickling the soles of my feet. Slowly, I stepped to the end of the plank. I looked down at the water below, out at the low-end of the pool where my friends and brothers were playing, at the roof of the buidling that held the shower and bath rooms. I stood straight as a pin at the edge of the board, arms at my sides, knees slightly bent. I rocked onto the tips of my toes and gave a bit of jump, pulling my arms above my head and leaning into my dive. Oh, and it was swanish, folks. Yes it was. It was perfect. It was my moment. It was my proof that I could compete with the best in the world.

Obviously, I did not become an Olympic diver. And, no, it wasn't because Plan A actually worked out (you know, my becoming an Olympic swimmer). Instead, I tried about a million other things in my quest to be the best in the world at something. I tried football, baseball, softball, gymnastics, chess, Atari, hula-hooping, spelling... Too many more things to name. And I never became the best in the World at any of them. But it doesn't really matter, does it? It doesn't matter because I'm the best I can be. It doesn't matter because even after all those tries and all those things, I still set goals and have quests and adventures. I never give up and I never think that I'll NEVER be the "best" at anything -- I never limit my own potential. I climb the high dive as often as possible. And I dive.

Wednesday, December 14, 2005

Bravery and Billy Boudreau

"Wow, you're pretty brave," said Billy Boudreau, his red hair falling over the large bruised spot on his forehead.

We were sitting in Sister Louise's office lobby at Our Lady of Consolation School (a misnomer if there ever was one, in terms of the "consolation" piece) I had just taken my brick-sized Accucheck meter from my "med box," and was preparing to lance my left index finger. Billy had been fighting -- again -- on the playground and was awaiting a meeting with Sister Louise, the pointy-faced nun that served as school principal.

I turned my body from him as I lanced my finger and squeezed a droplet of blood big enough to cover the test strip and set my machine to time the test.

"Do you do this EVERYDAY?" He asked.

I didn't answer. In my head, I willed the machine to please, please tick off the seconds faster. 54, 53, 52, 51...

"Fine." He said. And we sat in the silence with his bruised forehead and my disease.

I whispered a thank you as my bloodsugar came in at 97. That meant I could go back to class -- and get out of here.

I left that office and snuck straight to the washroom. The tears started falling as I hit the doorway. I locked myself in the nearest stall. I wasn't sure why in hell I was crying. I wasn't sad.

Then it registered -- I was angry. Furious, in fact.

How dare that bully take pity on me. The more I thought about it, the angrier I got.

Billy Boudreau was a mean kid. He tortured younger kids in the schoolyard, he threw rocks actually AT people, he had broken one of the parish priests' prized stained-glass bird baths. He made fun of the two retarded children that rode the bus with some of us in the morning, he laughed at and harassed kids who wore hand-me-downs. He was petty and cruel for no reason.

And he pitied me. And this stupid disease fascinated him. How infuriating. How humiliating.

I hated him.

I spent the better part of the next two school years -- my sixth and seventh grade years -- pushing Billy Boudreau's buttons. It was stupid, I know. The kid never had a problem beating up girls, so I often landed up bruised and sore. But I didn't want his pity. I wanted him to feel the same silly, petty spite for me that he seemed to feel for all of our other schoolmates.

And I wanted people to see me as brave for reasons outside of the way I dealt with diabetes. I wanted them to know that I would not accept pity.

Pity still makes me angry. I don't want you to feel sorry for me. I am not your victim, unless I choose to be, which is, I guess, precisely what I was doing in the years after that day in the office - picking my victim-hood.

Feel sorry because the bully smashed my face in because I called him fat.

But don't ever feel sorry because my fingers are covered in callouses or because I wear my pancreas like a beeper. Or because my bloodsugar won't go up or down. If you do, you're likely in for a fight.

Monday, December 12, 2005

I wanted that doll... And that book

It was late in the year I turned eight when I first saw a commercial for Cabbage Patch Kids dolls. I decided then and there that I was going to have one of the dolls. Remember now -- Cabbage Patch dolls, when they were debuted to the mass market later that year -- appealed to EVERY little girl aged 5 to 10. I still swear they used subliminal messages in those commercials, because for me, it wasn't a matter of "want," I needed one of those dolls.

Around the same time, my great-aunt Dot introduced me to cryptoquotes. If you've ever done a cryptoquote, you know what they are. For those of you who aren't puzzle-saavy, a cryptoquote is a word puzzle; the letters in the puzzle make up words to form a quote, each letter represents a different letter from the alphabet. I had decided that I also needed a book of those puzzles.

My poor mother. She took me shopping just after Christmas at Ann & Hope in Cumberland, RI. The store had two floors and there was a nifty escalator for shopping carts situated in the center of the store. The toy department and the books and magazines AND the bathroom were on the first floor, the layaway department was on the second floor.

Patient and wonderful mother that she is, my mom did her shopping on the first floor and then let me roam the toy department. She flipped through Woman's Day as I sat on the floor, surrounded by books and magazines. In ten minutes, I had found the ONLY Cabbage Patch doll in the store and I'd found the puzzle book I so desired. My mother argued that it was just after Christmas -- I didn't need another toy. Even then, though, I was a skilled litigator. I convinced my mom that one more toy -- especially a toy as coveted as that doll -- wouldn't hurt a thing AND I *did* want a book, didn't I? Books are good, right?

So, we put our shopping cart on the escalator and headed to the second floor to put my treasures on layaway. We'd made a deal that they'd be picked up after the first report card of the new year came out. As we headed toward the layaway department, I realized I thought I might need the bathroom. But I knew I'd gone just after we came into the store -- less than an hour earlier -- I couldn't have to go again... We parked our shopping cart behind two women with overflowing carts of merchandise to be laid away. Now, I knew I HAD to go to the bathroom. But it was Sunday and the store was closing in 12 minutes, and if we got out of line, I'd lose that doll and my book -- and there was NO way my mother was letting me go to the bathroom myself. So I stood there, squirming. Not letting on that I needed to go. Of course, my mom knew something was wrong. She asked, gently, do you need to go to the ladies' room? I said no -- too quickly, I guess. She reasoned with me -- we can tell this nice lady that you have to go, that we'll be right back... If you have to go, you have to go... No, no, no, I said. I can hold it. I can hold it. I can hol... Well, I couldn't hold it. I actually wet my pants standing right there in the layaway department. I was mortified, I didn't really care about the doll or the book anymore, I just wanted to crawl in a hole... Or something.

I was eight years old.

It would not be my last embarassment. In fact, it was the first in a long line of sometimes small, sometimes not so small, sometimes heart-wrenching mortifications. I'm up to just over two decades worth now...

It was just six months after the incident in the Ann and Hope layaway department that I was diagnosed with Type 1 diabetes. In those six months, my weight dropped significantly, I was exhausted most of the time, I was thirsty constantly... It only took my wetting the bed one time and having one more in-public pants wetting incident for my mother to ask a nurse friend of hers to get some urine test strips from the hospital she worked at.

I will never forget the afternoon I first peed on a urine test strip. I will never forget my mother, looking worried and pale, as she took the strip from me -- its test pads nearly black, indicating the unreasonably high levels of sugar and ketones in my urine. I will never forget when her fears were confirmed by the pediatrician I'd seen since I was two weeks old. I will never forget the look on my father's face when they told him I had the disease. But, I will also remember the strength they showed, assuring me -- letting me know that I would be fine, that I would have challenges -- just like anyone else -- but in the end, I would be fine. And I will remember how they held me as I cried at the prospect of a life of needles and urine tests (and later, blood tests) and how they kept telling me that I was stronger than this disease, that I could and WOULD learn to live well with it.

And, in no small part because of the confidence my parents had -- and have -- in me, I HAVE lived well with this disease. I am aggressive about my treatment. I work past the embarassment it sometimes causes, the frustration it tends to impart, and the anger I harbor against my rebellious body. I puzzle over the mysteries my diabetes presents, I read voraciously about medications and research and therapies. I test and record and look for patterns and make changes.

Most days, I feel like I'm slightly ahead of my diabetes curve. I get thrown a wild pitch on occassion, but I've learned that those are part of my life game. I let myself feel how I want to feel -- resentful, delighted, angry, blissful, strange, or perfectly normal... And it's OK. I'm OK, just as my parents assured me I'd be.

You know, I still have that doll. My mother bought it the very day of what she is convinced was my first diabetes-related embarrassing moment. She gave it to me that evening as she comforted me, letting me know I'd be OK. Always OK.