The one thing I always liked about diabetes, the only thing, was that no one had to know I had it.

Check out my latest column at Literary Mama called, (No Longer)  An Invisibled Illness.

By Amy Mercer

This column was originally published on the Literary Mama website.

“Mom, can we go to Old Macdonald’s for dinner?” Will asked as the golden arches loomed in his back seat window. I never corrected him. I liked that he associated a childhood song about animals and farms with the fast food giant. 

“Yes,” I said, turning on the blinker.

“A moo-moo here and a moo-moo there,” the boys sang as we waited for their order, conjuring up images of my childhood in the country and the still warm, thick milk with cream floating on top for Mom’s coffee, from the farm down the road. Turning in the driver’s seat to hand over their Happy Meals, I enjoyed the smiles and excitement over the small, plastic Disney toys. I enjoyed the aroma of fries that filled up the car on the way home. I couldn’t eat it, but if they wanted fries and nuggets, fine by me. My all-American fantasy was coming true: fast food and Disney toys that would lead to neighborhood cookouts and Little League games. 

Going to McDonald’s was a special treat when I was growing up. It was the seventies and my parents were hippies. Mom baked her own bread and canned her own jelly. We lived on 100 acres of woods in Vermont, and had a pen of chickens in the back yard. There was a garden behind the house where we pulled food from the ground for dinner, and a compost heap where we threw away the leftover scraps; the brown banana peels, crusts of bread, and the pointy, green shells from the snapped peas. In the late winter, we walked across the crusty snow to the neighbor’s sugaring shack where we tasted warm spoonfuls of fresh maple syrup. Wanting to become increasingly self-sufficient, Dad decided that if we wanted to eat chicken, he should know how to kill one. So he got a book from the library titled, “How To Kill A Chicken.” Mom, my sister, Erin, and I hid in the bedroom while Dad walked outside with a knife. Peeking through a window, I watched Dad chase the now headless bird around the yard. From that day on, we were vegetarians. But I missed the McChicken sandwich with the mayonnaise dressing, the pile of iceberg lettuce, the crispy chicken and the chocolate milkshake that I had to suck up through the skinny straw, making my head burn with cold.

My family’s dietary restrictions didn’t end with fast food. As the children of vegetarian hippies, my sister and I were only allowed candy on Friday’s “Candy Day.” On Fridays after school, I would stand filled with anxiety in front of the display at the general store: should I pick Starbursts or a Charleston Chew? In the end, it was never the right thing. I’d chew the sweet, strawberry fruit of a Starburst and wish for the chocolate of a Charleston Chew, knowing I had another whole week to wait. Hungry at home and unsatisfied by another batch of Mom’s homemade carob cookies, I’d search our shelves in vain for real chocolate. Our shelves were filled with containers of brown rice, whole wheat flour and oats for oatmeal, and I was angry; there was nothing to satisfy my craving.

As soon as I went away to boarding school at fourteen, I satisfied my cravings. I said yes to Cherry Coke and Sugar Babies during English class; yes to milkshakes and cheese steaks in the den after study hall; and yes to McDonald’s following field hockey games. For the first six weeks of school I said yes to my cravings, and then I became very sick. The nurse called my mom and when she came to pick me up at school, Mom knew what was wrong when she leaned down to kiss my face. She could smell the sugar on my breath.

Diagnosed with Type 1 diabetes, I learned to say no to food again. No more Cherry Coke, Sugar Babies, McDonald’s, milkshakes or cheese steaks. God seemed to be playing some sort of cruel game. Just when I’d arrived at the doors of food freedom, they were slammed shut in my face.

“Pickles are a free food,” the diabetes educator told me when I asked what I could eat between meals if I was hungry. “Or nuts,” she added. I hated pickles.

I said no to my cravings until I became a mother. Weaning my children from breast milk to chocolate milk, I ground up sweet potatoes, and then placed graham crackers in their fat little fingers. I was romanced by Lunchables and Squeezeables, Moon Pies and Whoopie Pies, chicken nuggets and French fries. Caught up in my children’s excitement at the brightly lit grocery store, I rewarded them with the things I didn’t get to eat: boxes of Dora The Explorer fruit snacks, rocket popsicles and sugar-coated cookies while I snacked on nuts. Watching them as they ate, I imagined the sugar melting on my tongue and I had to look away. I didn’t want them to see the cravings in my eyes. Lining one cardboard box of processed food next to another, our pantry was full of color, our fridge was overflowing, and I was satisfied. My boys would not eat carob cookies.

I was caught between the cravings of my all-American fantasy, and the restrictions of my childhood and my illness. And I think I was using my boys to feed my repressed desires.

When my three year-old came home from his first dentist appointment with a mouthful of cavities, I had to stare down my indulgences every day. I began to question my all-American fantasy and knew, in my heart, that restricted eating wasn’t such a bad thing. I didn’t even want those cookies I was giving the boys after all; I think I just wanted the choice of saying yes. So I bought a href=”http://www.amazon.com/exec/obidos/ASIN/0143038583/literarymama-20″>The Omnivore’s Dilemma, and when the lights in the grocery store began to feel too bright as I searched the aisles for anything without high fructose corn syrup, I started to shop at the local health food store. I stood in front of the peanut grinding machine and let the boys work the buttons. I listened to them squeal with delight as the thick, caramel-colored liquid slowly squeezed out of the hole and into our waiting plastic tub.

“I want to taste it, Mom!” Miles shouted. I pushed the cart through the narrow aisles slowly, and told the boys they could choose whatever cereal they wanted. I didn’t have to hurry them past, frustrated by their pleading for Cookie Crisp or Apple Jacks cereal. In the produce section I reached for Brussels sprouts, butternut squash and apples from North Carolina. I wondered if the food my parents gave me wasn’t a restriction but an introduction.

I want my boys to know their shelves are full at home. I want to take them to the farmer’s market, and teach them about growth seasons so they know to eat apples in the fall, strawberries in the spring and blueberries in the summer. I want to teach them to notice the cause and effect of the food they put in their mouths; the frantic, crazed feel of doughnuts, and the way the sugar makes them want to wrestle, yell and jump off the couch, versus the way a bowl of blueberries, strawberries or a spoonful of peanut butter will fuel their bodies and make them strong.

But I know this can’t happen overnight. I know that I didn’t start loving spinach until I was much older than my boys are now. I will start slowly. I will talk to Will and Miles about food so that when they look in the pantry and don’t find what they are looking for, they don’t feel angry. I will introduce them to something other than SpongeBob Cheez-Its, something like hummus and pita chips. Maybe I can offer them a balance and still say yes to McDonald’s every now and then.

“Cravings” is adapted from an essay appearing in the forthcoming anthology, Learning to Eat.

By Rosalind Joffe

This column was originally published on the Literary Mama website.

I was 29 years old and had been married for two months when I lost vision in one eye and was bedridden. The diagnosis was multiple sclerosis (MS). At first I didn’t have a clue what that meant. I spent the next four months regaining my strength and my vision. What I couldn’t possibly have known then was how long and how deeply chronic illness would transform my personal and my professional self.

I grew up in the feminist 1960s and I always assumed that I would have a family and a career. When I was diagnosed with MS, it didn’t occur to me that this could change. At that time, my identity was wrapped around being a photographer/multi-media producer and I was deeply invested in my career. I’d been on this career path since college and I was poised for the next step in my career as a multi-media producer in a local firm. It was a very physically demanding role with long hours and lots of travel. After my next “flare” of symptoms, a few months after I returned to work, I decided to apply for a job in the same firm but on the account side, which would give me a more predictable schedule and a reasonable, 10-hour work day.

It was a painful decision but I actually didn’t think about it a lot. At that point, I kept thinking this was all just a temporary situation. And so I made the first of many switchback career turns. I didn’t realize, however, how physically difficult and emotionally complicated it would be to continue to work with a debilitating and disabling illness.

Over the next few years, as my husband and I were planning to start our family, the MS flares continued but they were relatively mild and manageable. By the time our first child was born, I had left the world of producing for college teaching, thinking this would make it easier to manage my health, family, and work. By the time our second child was born, I was sure this was the right decision for me. Six years later, however, my body would redirect me yet again. I’d been a college professor for six years when a second autoimmune disease, ulcerative colitis, made it too difficult to be in front of a group. I was frequently and unpredictably running the risk of having an “accident” and would have to take very frequent bathroom breaks. This couldn’t be ignored, even for someone like me, who was used to overlooking symptoms. I knew that I wasn’t doing a good job anywhere – with my family, my students, or my health.

I went on disability and for the first time since I’d left college, I was unemployed. Although I became involved in community volunteer commitments, I was deeply unhappy – and not just because of the ugly disease. My self-esteem, already suffering from living with a debilitating disease, took a nose dive when I was no longer a person who worked. I missed the stimulation and interaction I got from working. Living with an unpredictable illness had made it vitally important for me to know that I could at least count on my ability to support myself and my children if I had to.

Let’s face it. The job description for parents should read as follows: be ready for the most physically, emotionally, and mentally demanding job you can imagine. Throw in a chronic illness that puts extraordinary demands on one’s time, and one’s physical and emotional state, and it’s easy to see why many women would chuck their jobs if they have the financial means.

And, as I found, when you live with a chronic illness, most people (including your parents, your friends, your doctor, and maybe even your husband) will not only encourage you to stop working, they’ll applaud you for it. Save your limited energy for the kids, they say.

Who could argue with that? I could, and I do.

That argument makes sense if it is the only piece of the puzzle you are looking at. I don’t propose that every mother should work. Nor that every woman with a chronic illness and children should work. But I do believe that if a person lives with chronic illness and wants to work, she should not be saddled with guilt.

The reality is that living with a chronic illness is a difficult and complicated road to travel. Forget looking for the GPS (or even an old-fashioned roadmap). You’re making it up as you go.

The loving relationships that I have with my husband and children provide a critical life support that nurtures and sustains me. But my day-to-day life has often been physically and mentally tough. When my body isn’t cooperating, I’ve needed something outside of my family to remind me that I am a vital, productive person. When I couldn’t move from my bed, the distraction of a work project helped me rise above the confines of that sick body. When my children were young, a hug from them made my heart sing. Now that they’re grown, just looking at them or hearing their voices brings a smile. But nothing distracts me from my pain, fatigue, and disabilities — nor gives me a sense of job well done — the way work does. Maybe this is even more the case because of my diminished body. I will never know. I have no way to test that theory.

There’s no doubt that being able to continue to work and earn a reasonable living while raising a family is difficult for even healthy women and much harder for those of us with a chronic illness. But what a worthwhile goal to put one’s energy towards. It remains the key factor in my own long-term health plan. It could be in yours, too.

Building on her experience living with chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind Joffe founded the executive career coaching practice, www.cicoach.com. Dedicated to helping others with chronic illness develop the skills they need to succeed in their careers, Rosalind firmly believes that living with chronic illness does not preclude living a full and successful life.

Rosalind Joffe is a recognized national expert on chronic illness in the workplace. As a leading executive career coach, she has been quoted in The Wall Street Journal, The Boston Globe, The New York Times, ABC Radio, as well as a variety of regional and national media outlets. Rosalind lives with her husband, Jake, in Newton, MA and they have two grown daughters.

As a mother, the most painful part of my ‘illness invisibility’ is how it affects my children. When I sat down to think about what to write on this topic (there were so many ideas that came to mind!) I knew I had to write about how my kids don’t know, and can’t see, when something is wrong with me. Will is seven and Miles is four-old enough to be aware of other people’s feelings. Miles asked me the other day as I sat on the couch reading, if I was sad. I laughed and told him, no, I wasn’t sad, I was just focusing on the story I was reading, but I could understand why he might wonder. I was quiet, a little tired and reading a serious story. I pulled him onto my lap and kissed his head. Then I put down my book and followed him to the playroom. 

When my blood sugar gets low, I get grouchy. When my blood sugar gets high, I get grouchy. Once when I was low, after I drank my juice and ate my graham cracker, I apologized to my son Will for being short with him. “My blood sugar was low and that makes me grouchy,” I explained. He seemed to listen and didn’t ask any questions but for weeks after, every time I yelled or sighed heavily, Will would ask me if I was low. And I’d answer, with a growl, that no, I was just in a bad mood. So for a while I stopped telling him when I was low, and instead drank my juice and kept it to myself because I didn’t want to be burdened by his questions.

But I began to wonder what it was like for him. What did my being low mean, what did my diabetes mean to him and how, other than watching me test my blood sugar and give my shots, how did he understand my disease? 

I read somewhere a story written by a man whose mother had been a type 1 diabetic. He wrote about how hard it had been to live with her mood swings, how he and his brother never knew when she was high or low and how it would affect her mood. He said growing up with her was like walking on eggshells. 

Being grouchy when I am low makes my illness visible to my children. I will stop hiding my highs and lows from my children so they can see, all of me.

Invisible Illness Awareness Week

By Amy Mercer

This column was originally published on the Literary Mama website.

Miles was drinking the bathwater again. I saw him as I walked by the open door of the bathroom, on my way to get the boy’s pajamas from their bedroom. My feet dragged. The end of our long day would be over once I completed baths, jammies, books and bed; then I could collapse onto the couch and read. I was almost there. But Miles was scooping water with a plastic bath toy, leaning his head forward and sipping from the rim of the boat. The edges of his hair were wet and sticking to his cheeks.

“What are you doing?” I asked my four-year-old, reaching to brush the wet hair from his face.

“I don’t know,” he said. His stock answer.

“Are you thirsty? Don’t drink the bathwater, it’s yucky. I’ll get you something to drink.” I walked into the kitchen, suddenly alert. With a sippy cup of chocolate milk in my hands, I wrapped Miles in a towel, handed him his milk, and watched as he gulped it down.

“Done,” he said, handing it back to me, empty.

Miles loves chocolate milk, apple juice, juice boxes, lemonade and even water. He drinks quickly and often, and it scares me.

I remember being thirsty. I remember standing under the too-bright-middle-of-the-night lights of my private school dorm bathroom and gulping water from someone else’s plastic cup. I was so thirsty that I’d been dreaming about water. So I pushed back my warm comforter and stood, weak and dizzy in the lonely darkness of adolescent girls finally, temporarily asleep, and drank another cup of water. Two days later I was diagnosed with Type 1 diabetes.

My younger sister had been diagnosed six months earlier, and in the stark, antiseptic hospital room, I watched her prick her fingers and pee on a test strip to see what color it was and compare it to the chart of blood sugar colors. I watched my sister learn how to stick a needle into her thigh, her arm, or her stomach. Her diagnosis was a shock to our family members, who until then had believed in the healing powers of positive thinking. Dad taught us how to imagine our white blood cells as polar bears marching through our bodies, fighting off infection. We were never sick; we were “fighting something.” Later, I watched Erin stumble out of our small town church on Christmas Eve, her blood sugar low, and fall laughing into a snow bank. I watched my parents fumble through their pockets for Lifesavers and shove them into her mouth while she yanked her head from side to side, yelling, “No!” Church members filed past, staring, and I was so glad it was her and not me.

But then I got sick too. Our family doctor told my parents that it was rare to have two kids diagnosed with diabetes in the same family. I remember the doctor said that the causes of diabetes were still unclear; they could be environmental or triggered by a virus. There seemed to be more questions than answers. Diabetes is an auto-immune disease which meant that my body was attacking itself; my polar bears had gone mad. I was only fourteen-years-old, and the workings of my body were a mystery to me. Unlike my smaller, curvier friends, I didn’t have breasts and feared that I looked like a boy; I was skinny, flat-chested and had big hands and feet. As my small, curvy friends ran across the field hockey field, it seemed unfair that my body had failed on the inside too.

I remember a conversation I had with my ob-gyn when I was pregnant with my first son, Will. I’d asked her about the chances of passing diabetes on to my children. She told me that they were slim, one in one hundred. The chances were worse for fathers, she said, one in seventeen, and I was glad I was not a man. She explained that medical advances had turned a formerly fatal illness into a chronic disease, and the advances in research had led to long term complications.

“Medical advances have eliminated the survival of the fittest,” she explained. “We’re keeping the disease alive through medicine.” Before the advances in diabetes care, women were discouraged from having children, and often had several miscarriages before giving birth to a baby. Very often, after nine months of a difficult pregnancy, many times resulting in a risky caesarean delivery, a baby born to a diabetic mother was born with a defect. My ob-gyn talked to me as if I were lucky to be living in a time when medicine made these things (giving birth to a healthy baby and living without complications) possible. But I didn’t feel lucky.

From my mother, I inherited the color of my skin, my hair, and the shape of my mouth, while my long legs, and the slope of my nose, I inherited from my dad. My children at seven and four are now losing their teeth and learning to read, but my blood is running through their bodies. Will has my nose and shoulders, and Miles looks like a younger me when his hair is long and curls around his cheeks. Will is patient, and they both have a natural athleticism like their dad and this makes me confident that they will be accepted because of the way they can run, jump and throw. I worry they will have my introverted tendencies and I can already see my bad sense of direction in Will every time he walks out the front door. I hope that they are readers and lovers of books, but what about their insides? What will they inherit from me?

The next morning, as Miles sat at the kitchen counter watching cartoons and waiting for breakfast, I reached for his hand.

“I’m going to prick your finger,” I explained. “Just like how Mommy does.” He didn’t fight me so I grabbed the tip of his pointer finger, acting quickly so he wouldn’t have time to pull away, and pinched the small, soft tip between my larger, calloused fingers. I pressed the Accu-check against his skin and looking up once to reassure him, pushed the plunger.

“Ouch!” he said.

“What are you doing, Mom?” Will climbed onto the other barstool and leaned across the counter to watch. I ignored him. Pressing below the spot where I’d pricked, I collected a small, bright red dot of blood onto a test strip. Holding the machine in my hands, I waited.

5,4,3,2,1. Miles’ blood sugar was 81.

“Ha! Look at that!” Worry evaporated from my body, and letting it go, I realized I’d been clenching my teeth.

“Oh.” Miles and Will jumped off the barstools and went to the back to play.

I want the smooth skin of my children to remain unbroken on the inside and out. I want their fingers to remain callous-free, I want their pancreases to continue to engage in a conversation with the food they put into their mouths, their beta cells to keep pumping insulin, their stomachs to remain un-punctured by needles, and I want to watch them walk steadily by the snow banks of life. I want my boys to live the kind of lucky life my ob-gyn was talking about, the kind that comes with a freedom from pain, a freedom from being different, a freedom from complications.

I don’t want my boys to be thirsty.

Amy S. Mercer is a freelance writer living in Charleston, SC with her husband and two sons. Her essays have been published in skirt! magazine, A Cup of Comfort for Writers, Diabetes Forecast and Literary Mama. Amy is pursuing her MFA in creative writing at Queens University and working on a book about living with diabetes. She was diagnosed with Type 1 diabetes twenty-three years ago and is in great health, free from complications. You can read her blogs at www.alsmercer.wordpress.com and www.chronicmamas.wordpress.com

I just read Peggy Orenstein’s essay in this Sunday’s, The Way We Live Now section of The New York Times magazine called, “Stress Test, Why Americans want to believe that our mental states can control our physical maladies.”

Orenstein says, “I suspect women today may be particularly vulnerable to placing the locus of illness in their heads rather than their bodies. In part that’s because the causes of the ailments we’re prone to-reproductive cancers, arthritis, fibromyalgia-are often mysterious in origin. But it may also be an artifact of our rapid and and successful social progress. We of the postfeminist generation grew up being told we could do anything, be anything, if we just put our minds to it. Yet, if we have the power to create our own fates, wouldn’t the corollary be that we’re also responsible for our own misfortunes?”

Those few lines stopped me in my tracks. Yes Peggy, I wanted to ask…all these years I’ve wondered what I’d done wrong to make my body attack itself, to wage a war on my own cells and stop my pancreas from producing insulin. My dad was a big follower of the mind-body connection and used to tell me to imagine my white blood cells as polar bears fighting off the sickness. There were no cold medications in our house, no tylenol or advil, no prescription drugs, and when my mother got sick, she retreated to the couch and was, “fighting something” as if she had the ability to simply will her cold away. Like a child of divorce, I wondered all these years what I had done to cause the damage in my body, what had I done to make my body stop working? Because when someone asked me how and why I got diabetes, I still have no clear answers.

I remember one afternoon when I was pregnant with my first son and working in retail an older woman came up to me to admire my pregnant belly. She was shopping for shoes and we chatted while she browsed. She eventually told me she never had any children of her own.

“It wasn’t meant to be,” she said. “I wasn’t meant to be a mother.” She went on to explain that she had tried to get pregnant and was never successful and with an unblinking stare, that it was simply not meant to be.

When she walked away I was overflowing with fury. Not meant to be had nothing to do with it! If I had followed that advice, I would never have gotten pregnant. I took fertility treatments to get pregnant with my oldest son, and a team of doctors to lead me through the nine months of pregnancy. I stood there silent, knowing there was nothing I could say, she was a customer after all, and they were always right.

I realized later that this older woman must have talked herself into believing in the mind-body connection to explain away her infertility during a time when infertility treatments were not what they are today. She was not of the postfeminst generation who was raised believing she could do anything, so in the end, she stopped trying to be a mother. I am a woman who was raised to believe I could do anything even after I was diagnosed with a chronic illness. With a chronic illness, I was taught to believe that I could do anything I set my mind to, including motherhood.

And even though there are still no concrete answers about where my disease came from, I’ll agree with Peggy’s answer, it was just bad luck.

by Andrea McDowell

This column was originally published on the Literary Mama website.

I was diagnosed with type 1 diabetes sixteen years ago when my vision deteriorated from 20/20 to nearly-blind in three days. Since then, I’ve been very fortunate: not only am I still free of complications, but past the initial diagnosis I have never been hospitalized for a low or high blood sugar. No matter how low my sugar goes, I am always capable of getting to the fridge for a cup of juice — or, more frequently, to the pantry for a handful of rocket candies. This is where the trouble starts.

My four-year-old daughter Frances sits beside me on the couch. “Mummy, can I have some rocket candies?” I hand her two, and remember how I was once obsessed about her nutrition long before she could even speak.

For most new mothers, the costs and benefits of breastmilk are relatively slight. Breastmilk confers slight advantages in IQ and immunity which are largely washed out by family environment, exposure, and genetics. But formula has been shown to increase the risks of developing type 1 diabetes, allergies and asthma. It just so happens that I have all three of these conditions, which raises my daughter’s baseline genetic risk of developing them herself. I swore that formula would not pass my premature baby’s lips until she was over twelve-months adjusted, when it has been shown to be safe — this even after the nurses in the Neonatal Special Care Unit plugged formula-filled bottles in her lips, cheerfully disregarding my concerns and blithely stating that preemies don’t get nipple confusion. My daughter rarely passes up an opportunity to prove anyone wrong about anything; and so, nipple confusion she got. This necessitated several weeks of feeding with nipple shields, pumping and bottle-feeding expressed milk, and thirty-six agonizing hours trying to break her silicone habit by feeding her expressed milk by eyedropper, ending in a six-hour feeding-strike standoff. I won; she was finally persuaded to take a breast, and took her revenge by refusing to take a bottle or a pacifier again until she was nine months old.

Her prematurity also resulted in reflux. Small, frequent feedings were required to prevent her tummy from being overloaded, as well as holding her upright 24-hours per day, as any angle less than approximately 75 degrees would result in vomiting and screaming. Her very small size and slow growth pattern had not yet been chalked up to genetics, so I was paranoid about keeping calories where they belonged (in her stomach). But the worst, the absolute worst, were her teeth.

Frances broke her first teeth at three months old, and she used them. She didn’t bite. She chewed. When she nursed, she ground those centimeters of sensitive flesh between her fresh incisors with every suck and swallow; and at every feeding, the wounds grew deeper and wider. I could not refuse to feed her; she had reflux, she was growing so slowly. Over and over I took that little mouth full of all those little teeth and applied them directly to wounds that never healed — for six months. And I did that because of diabetes.

I’d think sometimes about switching her to formula, especially while I whimpered or cried through her nursing sessions. I’d think about it. And then I’d imagine, unbidden, a future scene at a doctor’s office where she too is diagnosed with type 1 diabetes and stuck with a future of health costs and needles and blood tests and measurement and constant worry. I pictured our grief and the guilt I knew I would feel if I felt there was anything I could have done to ward it off, and hadn’t. The pain of nursing her through those sessions was never as great as the grief of those imaginary diagnoses. So every time I toughed it out and let her dig those teethmarks deeper — until finally she consented to take bottles when she was around nine months old. I began pumping and bottle-feeding to give myself a chance to heal, and it all got a lot better until I gratefully switched her to whole milk at thirteen months. Now all that’s left to remind me of that possibly insane level of dedication to infant nutrition are a few hard-to-see scars.

Here I sit on the couch. My daughter is beside me, pleading for rocket candies. I could say no. I could say, “Frances my dear, for Mummy these candies are medicinal, and keep me from getting sick and ending up in the hospital; for you, they are an express train to obesity and cavities and hyperactivity.”

It’s too hard to explain to a four-year-old. After a year of letting her nearly amputate me in the service of perfect nutrition, I let her go to the kitchen to get a small package of her own.

Andrea McDowell lives with her daughter in Toronto, Ontario. By day, she works in the environmental field; by night, she mothers; and she writes when she ought to be sleeping. Andrea has previously published fiction and is currently working on her first novel. Come September she will be pursuing a degree in professional writing; she blogs at a garden of nna mmoy.

I heard this story the other day, “On Point.” Tom Ashbrook spoke with Dr. Tom Graboys, a doctor struggling with Parkinsons and Dementia who has just co-authored a memoir called, “Life in the Balance.” Listen to this story here, at http://www.onpointradio.org/shows/2008/06/20080616_b_main.asp

What struck me about this story was the language Dr. Graboys used to describe his illness. He used the words, “Keeping my head above the water” which is what I talked about in my intro column for Chronic Mamas. Dr. Graboys said for years he was “desperatley trying to keep my head above water and desperately trying to keep everything on track.”

I think it’s both sad and interesting that this drowning metaphor resonates across the spectrum of illness….from Diabetes to Parkinsons and Dementia.

Swimming With My Clothes On 

This column originally appeared on the Literary Mama website.

by Amy Mercer

My family has a tradition of jumping into Keoka Lake after the annual Fourth of July costume parade. I was always one of the last ones in the water; I liked to watch the outfits fill with air as family members ran and jumped off the wooden dock. I liked to watch how the bright colors became muted in the cold mountain water. I’d step slowly down the ladder in my princess dress, holding my breath while the lake wrapped itself around my legs and pulled me toward the murky bottom. I was surprised by how quickly my slippery pink satin skirt became heavy under the water as panic filled my throat. I was scared that I wouldn’t be able to keep my head above the water and that I might get sucked to the murky bottom. So I kicked my legs furiously to keep from drowning.

Living with a chronic illness is like swimming with your clothes on. I was diagnosed with type 1 diabetes when I was 14 years old. I was in my first semester living away from home at a private high school when I became sick. I was so tired and thirsty that I was dreaming about water. My younger sister was diagnosed six months earlier, so when my mother came to collect me at school and leaned down to kiss my face; she recognized the sweet smell on my breath. Mom raced with me to the hospital, making promises that diabetes would not change my life, would not define me. I was told I could do anything and so I did; I spent a semester abroad, hiked into the Grand Canyon, rock climbed in Arizona and canoed in the Gulf of Mexico. I shoved my disease into a closet and pretended it didn’t exist.

I didn’t let my diabetes out of the closet until I began thinking about getting pregnant. This body that I’d used to propel me from one risk taking adventure to the next now needed to be treated kindly. My doctors explained that the first weeks of pregnancy were the most important for a baby’s development and that my blood sugars needed to be in tight control to ward off birth defects. I was paralyzed with fear. I was not even pregnant yet and there was so much at stake. I wanted to shove this idea into the closet but the words “Birth Defects” kept banging down the door. My husband and I tried to get pregnant for a year. Each month was a disappointment and I began to think I wasn’t meant to be a mother, that maybe my body was defective in more ways than one. I feared in the dark places of my heart that my body — this body that I injected, pricked, fed and denied — was different and might fail me, might deny me this basic, fundamental female skill. I’d been betrayed by my body at the edge of adolescence, and I feared that I would be excluded from the culture of motherhood.
So I was thrilled, stunned, and relieved when I finally saw the positive lines on the home pregnancy test and dedicated myself to perfect blood sugar control to protect my future child from the danger lurking within. I was labeled “High Risk” and the threat of birth defects floated just beneath the surface of my pregnancy every time I tested my blood sugar, every time I raised the fork to my mouth, the cup to my lips.

I was closely monitored, measured, tested, weighed, poked, and prodded for nine months by a team of doctors. I ate low carb meals and snacks (Smoothies, Balance bars, and chicken) even though what I really wanted was a piece of peanut butter toast. I tested my blood sugar so often that my finger tips were hard and calloused. Every time I got a “bad” reading (180+), I was plagued by guilt and imagined the sugar flowing like poison through my blood into my baby. In the high risk room of the local hospital I held my breath every time I had an ultrasound, worrying about what I might see in those blurry images. I tried to read the face of the technician for clues, but her eyes were flat and unblinking. So I worked hard to avoid bad readings and low blood sugars. I worked hard to exercise, take my vitamins and go to all my doctor appointments but I also watched my friend at work who was due a few weeks before me and listened to her talk about taking long baths, sleeping late on the weekend, and drinking milkshakes and burned with envy. It sounded so easy. I struggled to think positive thoughts, to visualize a healthy baby, to treat my body less like a machine and more like a mother-to-be.

My son was born on August 28th, 2001. I tell him the story of his birth on the eve of his birthday every year, just like my mother tells me mine. I tell him how my feet were so swollen that they hurt to touch, how the sun was white and flat in the sky, how the heat felt like Saran Wrap around my legs. I tell him how his dad and I drove to the hospital and checked ourselves in. How I spent the first night there alone and how, first thing the next morning, I was hooked up to IV’s and monitors and pushed for over two hours. I edit the part about how the drugs, the pushing, the vacuum, and forceps couldn’t get him out, how he had to be cut from my imperfect body. I tell him the part about hearing his cry, how something split apart inside of me with that sound, the sound of my child. He was here, I was a mother, and that was all that mattered.

That was seven years ago and so much has changed. I am now a mother to two healthy boys. Since I became a mother, my husband hasn’t reached over in the middle of the night to feel my sweaty back, to wake from the heaviness of sleep and rush to the kitchen for a glass of juice. Since I became a mother, he hasn’t had to hold my head up and pour the juice into my mouth to try and bring me back. Becoming a mother has taught me how to take care of myself.

Becoming a mother has also inspired me to reach out to other mothers living within the restrictions of a chronic disease. Mothers like myself who kick their legs as they try to keep the weights of disease from pulling them to the murky bottom. We are mothers with illnesses who bake dinners for teacher appreciation week, drive to t-ball practice and tennis lessons, arrange play-dates, drop our kids off at school, commute to work, and rock our babies until they fall back to sleep. We are mothers who test blood sugar levels, give shots, take medications, manage pain, and arrange for doctor visits. Most of all, we are mothers caught in the familiar balancing act of work, raising a family, finding time for ourselves and for our partners. What makes us different is Diabetes, Lupus, Multiple Sclerosis, Chronic Pain, Arthritis, Fibromyalgia, Crohn’s, Epilepsy, Depression or other unending illnesses. What makes us different are medications, complications, emotional and physical pain. What unites us is that we are mothers reading and writing our stories. We will tell our stories of illness because telling is what makes us stronger.