Tuesday, January 31, 2012

That's me, frantically stopping at the summit of the Grand Mesa in CO, digging in my bag for some quick-acting glucose.

I get asked the same question every time I talk about my cycling. "How?" For people without diabetes, the inquiry is more broad in scope:

"How do you find the time to workout eight, ten, twelve hours each week?"

"How do you find the motivation to exercise when the lure of a long sleep or an afternoon relaxing with book in hand beckons louder than the call of the bike?"

"How do you keep it up day after day, year after year?"

And for those with diabetes, the question is much more pointed:

"How do you manage your blood sugar while keeping active?"

My answers, of course, don't really matter to anyone but me. The motivation is different for us all, the incentives are going to vary, and the bit about my blood sugar? What works for me probably won't work for anyone else because diabetes is, at its core, a disease both personal and dynamic. Each day, each workout, each moment is different....but my routine is much the same.

I awake every morning at four o'clock, while my husband and kids are still asleep. Before my feet hit the cold of the floor, I check my blood sugar. I start my workouts, generally, with a blood glucose between 155-175 - a little high so I won't drop too fast, but not so high that I bonk. I either eat or administer a shot of rapid-acting insulin (or both), and begin my workout. For the next ninety minutes to two-and-a-half hours, I will run, cycle, lift weights. I will do intervals or resistance train. My heart rate will range from my resting beats per minute of about 50 to, at times, over 210. Throughout it all, a voice in the back of my head will ask, "How is your blood sugar? Too low? Too high? How do you feel?" I will check it at least two more times before I am finished with my morning exercise.

Then, I eat. I've consumed the exact same breakfast every morning for nearly five years, save those days when I travel (in which case it is instant oatmeal mixed with PB packets or apples and almond butter, all of which tucks into my suitcase alongside my other essentials). My standard breakfast is a smoothie designed by Walter Willett, chairman of the Department of Nutrition at Harvard School of Public Health:

Willett uses 2 cups of frozen blackberries, 1 large banana, 1 cup of soy milk, 1/2 cup of apple juice and 1/2 cup of silken, reduced-fat tofu. A 3/4 cup serving provides 185 calories, with 5.9 g of protein, 38 g of carbohydrates, 6.4 g of fiber and 1.8 g of fat, as well as other nutrients from vitamin E to calcium to phosphorus.

...Sometimes, I sneak a little PB in there, too...

And, of course, it's another shot of insulin. I will do this again at lunch (always a big bowl of salad greens accompanied by some raw nuts or seeds, a little cubed tofu or some other lean source of protein) and dinner. In fact, I will check my blood sugar and make an adjustment of one sort or another anywhere from three to ten more times before my last shot of long-acting insulin as I ready myself for sleep and get together my belongings for my next workout early in the morning.

But what of the other, more ambiguous "Hows?" The ones that don't rely on numbers, shots and carb counts? The ones less about "How," perhaps, and more about "Why?" The reasons that I wake in the dark, leave the sanctuary of my sleep so that I can freeze in the fluorescent of the gym or battle the ice and wind on my bike, feel the cold air burn my face and hands as I run in what feels like the middle of the night? These are the things that motivate me:
  • This is my time. Like a lot of mothers, my children and their needs are paramount in our home. I find myself often unable to take a shower without two tiny falsettos on the other side of the curtain, clamoring for my attention. These are the hours I earn to re-focus my energies on me. It is selfish time. I am tending only to myself and my own body.
  • Cover models. Not because I want to look like them - I don't. But because they remind me that my body, while imperfect with stretch marks earned in pregnancy and bruises on my belly thanks to repeated meetings with a needle, can do a lot more than just take a picture. I have broad, muscular shoulders and thick calves because I put them to good use.
  • Stress reduction. The only thing I can think about in mid SufferFest is "survival."
  • Living long enough to see my grandkids … and play with them. Because my mother didn't.
  • Showing my children the value of being your best self. That means working out, being healthy, being strong and fit and secure. You can't do that sitting on the sofa.
  • The dreaded "yuck" of lethargy. Once the habit is ingrained, once you are used to getting your daily dose of cardio, the absence of it is a bit like a fast food binge. You feel lousy.
  • A workout partner. My husband is my best competitor, and my most fantastic motivator. And he looks pretty hot in spandex.
  • Richard Simmons. Seriously, ever watched "Sweatin' to the Oldies on your bike trainer?" You need to.

  • Winning.

Saturday, January 28, 2012

Someone once asked me what ability I would most want to impart to my children. The answer? "Resilience."

Having a problem or confronting a challenge should never serve as an impediment to doing those things most important in your life. From those obstacles, we learn the boundaries of our abilities, that the encumbrances we assume are often not true limitations, that we are often confined less by the "real" than the "imagined." And sometimes, those challenges give us amazing opportunities. Certainly, I would not be racing with Team Type I were it not for the fortuity of having diabetes.

Of course, this
is not the conventional image of "good fortune."

Diabetes is something of a dance. You find the right rhythm, and you move smoothly form one place to another...one day to the next...and with the peace of predictability. Miss a beat, however, and you find yourself awkwardly, sometimes frantically, trying to recover the right steps.

Diabetes requires constant attention, and there exists the heavy weight of commitment required to manage the demands of the disease. Unlike other chronic illnesses, where a physician might dole-out weekly or monthly treatments, diabetes is the responsibility of the individual. However burdensome, there is a seed of good fortune buried in that connection to the body. I am more aware of the impacts of external forces...of stress or fatigue...of food or thirst... I take better care of myself because I have this disease. I model for my children the ability to move forward and push past the things that make it harder to attain a goal, but not impossible.

None among us will walk through this life without challenge. For me, it is diabetes. For Henry, it is autism. For others, it is a cancer or an autoimmune disease of a different sort, a defect of the heart or liver, a learning disability or physical handicap, a mental illness or a personal loss. We all have reasons to quit...or to do better, go faster, work harder. To give thanks for the good fortune of disease or sadness or difficulty. The mind can frame a challenge in the context of "excuse" or in the realm of "opportunity." I hope my kids choose the latter.

Friday, January 27, 2012

Food. It is the stuff of breath and bone and tissue. Amino acids, the foundation of life over the period from primordial existence to the appearance of man, and all the stages of evolution encompassed therein. We are built by our own consumption.

It is no surprise, then, that much of my life is spent talking about food. A vegan. An athlete. A diabetic. My food is either the antidote to my ills, pabulum for my screaming muscles and deep inhalations as I run and ride, or the toxicant that will slowly kill me. Before the advent of insulin, diabetics were placed on starvation diets to manage blood glucose levels. Too much food or a morsel of the wrong sort, and the individual risked imminent death. Too little food, and the subject withered and died. Diabetes perched itself on the apex of oblivion, where satiety and starvation were at opposite ends of daily life.

It is with the advent of insulin that I can eat until full...but never without mindfulness.

It's easy to read that caveat - "mindfulness" - as a synonym for "fear." It is not. We are taught in the west that a food is the sum of its parts. Our reductionist nature and the demands of nutritional science dissect each vitamin and mineral. Charts are manufactured to illustrate how the tiniest particles of an egg contain a certain number of calories, so many milligrams of this or international units of that, and how to best represent them in a bowl or how to crush them into grains of sand-like powder and stuff them in a capsule. Those of us with diabetes make cautious calculations at each meal, trying to assess from grains of rice and cubes of vegetable the exact number of carbohydrates we are about to consume, and the precise amount of insulin needed to counter-act the effects on our bodies. The palate is ignored, the sensorial experience of kneading dough, smelling yeast, watching a loaf of bread come alive in the blister of an oven...these things are not contained in the computation of nutrients and the scientific understanding of those amino acids.

And so you'll find me in the kitchen, and often with a child at my side. We are not here to do the math of eating. We are here to enjoy the happy crusts of consumption : the process of nourishing body and spirit. The toddler chub of my daughter's fingers smash a clove of garlic, and she adeptly tears the sticky skin from its side. My son snips mint leaves for chutney, the tactile and olfactory joy connect him to his work and weave complex associations of taste and texture and smell that embed themselves in his mind to create comprehension. We are nurturing the physical and the cognitive.

And so it is that I eat ravenously, fearlessly and always with an eye toward good food. I spend hours tucking fresh mango into coconut rice for the children's bentos, or rolling dough for homemade blueberry animal crackers. I marinate mung beans in a pool of water for crisp cakes to be dipped in a bath of lime and cilantro. I simmer and stew vegetables for broth, and then ladle hot stock into arborrio rice for risotto. It is about eating well in all regards : good food, beautiful company and the comestibles that provide not only those building blocks of tissue and breath, but the things that feed the very essence of ourselves.
In our home, food is a process. It it a sacrifice from inception. Not the kind immolation that is literal, of course, as we are vegan and eschew the consumption of animals. Our mindfulness connects us to the manner in which the world about us impacts the world of our home, the space in ourselves. Our food affects our body in the same ways that our attitudes about ourselves are reflected in the foods we seek. Diabetes has made me more conscious of my consumption, as the ripples of each bite are measured by a finger stick, a droplet of my own blood, a number on a meter. Mindless consumption of the sort engaged in the drive thru, where chemical edibles are tossed on wax paper trash and thrust through a window, and then engulfed by rapid chomping on the way from one place to another...consumption in the home where a quick fix meal laced with synthetic substances is unwrapped from the from the freezer and tossed in the oven...these are the ideas that fuel excess and wreak havoc on the self, ending in a myriad of frightening ills for those with this disease - blindness, amputation, renal failure. We are told that one needs to feel full to stop eating, that food is comfort, or that one’s body would be better if it were skinnier. We are told to read labels, to decipher nutrients, to be reductionist in our food selections.

We are not told that food is about community. That, when we break bread with family and friends, we are nourishing the essential parts of the self. Cooking your own food also helps to recognize the value of what you consume. The more thought you put into your meal, the more healthful your selections are inclined to become. When you make food about the process of production, the sensory experience of creating good food, the taking of one ingredient at a time and making each cooperate and compliment the others as they mingle and marinate, you make something worth eating.

Wednesday, January 25, 2012

Perhaps one of the most memorable scenes in the whole of American literature is that of Tom Sawyer, evading his obligation to whitewash Aunt Polly's fence. Sentenced to an afternoon of painting, Tom is desperate to get out of it by any means necessary. He spends the day persuading a series of local boys that whitewashing is fun. Tom is so convincing that the boys not only beg to take over, they actually bribe him with their most treasured possessions. At the end of the day Tom is loaded with this juvenile largesse, and is rewarded by Aunt Polly for a job well done.

Midori is my Tom.

I was informed by the directress of her school that, earlier in the week, Midori had been engaged in a lesson using small glass beads. Upon shifting her work to the side, the lesson tipped over and the pile of beads went cascading to the floor. An indignant Midori surveyed the mess before eliciting the help of her teacher. Kindly, she inquired if the instructor might assist in cleaning the mess.

Her teacher had not the time to manage Midori's beads, and invited her to ask a friend. Sullen, Midori insisted she would not be able to scoop up the whole lot of tiny glass marbles and place them back on her tray. Midori's teacher smiled, and reminded her that she could not select another lesson until she had assembled and put properly away the work on her table...and now the floor.

A few moments elapsed, and Midori courted the help of her friend, Alena. A sweet girl with a mop of yellow curls and a quiet disposition, Alena politely declined to assist.

Midori trounced back to her seat. Arms crossed. Pouting.

Taken with sympathy for her friend, Alena kindly stopped her work and walked to Midori. "Alright. I'll help you."

A pleased Midori grinned widely, leaped from her seat and embraced her friend in a grateful hug. "Alena, I love you! You are such a kind friend! Thank you so much. I am going to sit here VERY PATIENTLY while you pick up all those beads."

And Midori did just as promised.
Henry Furuta was frantic from the moment of his birth, weeks early, in a blizzard, surrounded by the commotion of frightened parents and a medical team bewildered by a delivery unexpectedly urgent.  He was small and pale, with almond-shaped eyes like his Japanese father.  A healthy baby boy, we took him home from the hospital bundled in all the dreams and expectations new parents have for their children.

Henry's infancy was otherwise unremarkable. The patterns of movement that mark developmental milestones fell nicely in place, and Henry proved a sweet, contented baby that did all the things infants are supposed to do: smile and coo, sit and crawl and learn to walk. Even then, however, in the spaces between "normal" and "aberrant," we saw peculiarities. Henry was often described as "intense," with tremendous focus on the most minute tasks. He would spend hours placing together the pieces of jigsaw puzzles, and had a marked acumen for spatial reasoning. One particularly sunny afternoon, before he could walk or speak, Henry was playing quietly in his nursery surrounded by familiar wooden trains and pieces of interlocking track. With fidelity, we watched as the tiny baby assembled a perfectly circular pathway for his trains, each piece of track met end-to-end in a giant wooden orb. Conspicuous as it seemed, my husband and I smiled proudly to one another at the thought of our adept young son.
There were other things, too, that we euphemistically deemed "quirky." Henry delighted in books, but gave his parents required readings: He would sit only to hear "Llama, Llama, Red Pajama" and books by Eric Carle read over and over again. Any other readings were quickly dismissed. By age one, language arrived in torrents of elocution, literary works recapitulated, in crashing waves of stories and verse. He said little that was truly authentic and spontaneous, preferring to recite with absolute perfection those books he knew and loved. And then there were the exhalations of energy and sound, the modulations and noise that Henry produced as squeals and auditory tics. We watched Henry move his fingers in front of his face, rhythmically, almost melodically...and turn...and spin...and become a cluster of symptoms that would seem to yell from the threshold of autism.

As he grew, Henry became increasingly impulsive and anxious, and he began to bite other children. For the first time, Henry's quirks were no longer endearing, but problematic behaviors we had to ameliorate for the sake of sending him to preschool. He was evicted from the child care center at the gym following a bout of brutal attacks on unsuspecting peers. He was dismissed from one child care center and then another. At a particularly painful and cathartic moment, I received a call from the director of our two-and-a-half year old son's Montessori school, informing me that he were no longer welcome to attend programming and that he was, simply, "unlike the other children." Indeed. Even amid the sting of rejection, as I watched the world seal itself off from my sweet little boy, I knew I loved my son far too much to keep moving forward without the benefit of a diagnosis, interventions, and resources. We did the only thing we could, and we took our son to The Child Development Unit at the Denver Children's Hospital. We were not seeking a name for his affliction but, rather, the tools to navigate around the corners of daily life that had now become burdensome, almost caustic.
After four days of tests, watching a myriad of professionals try to reach the cusp of my son's world apart, lay fingers on his daydreams and reel him back from a mental space none but Henry may occupy, we had a label firmly affixed to his medical records: Autism. The doctors delivered the word pensively, waiting for a visceral reaction - for sobs or protests - for something other than what my husband and I delivered. We exchanged a loving glance at the boy across the room, spinning the beads on the abacus he had chosen from the CDU prize box as an award for his tolerance of the poking, prodding and mental gymnastics to which he had been subject in the preceding days. Disinterested in the moniker itself and all its implicit meanings, we moved in search of strategies to help negate the deleterious impacts of autism while allowing the diagnosis to serve as a conduit in accessing services.
Since then, we have perched ourselves at the apex of prudent interventions and therapy as a full-time job. We agreed, early on, that we would not attempt to brow beat our son into normalcy nor inundate him with all manners of arbitration. Instead, we selected those therapies we felt most prudent, and employed them in every area of our lives. We painstakingly dismantled each task into its smallest parts, teaching our son to wash his hands in dozens of tiny pieces, to put away his toys in the smallest morsels of movement, to pull his shirt over his head in fragments of stretching and grabbing and ducking beneath the collar. Our home became a Montessori, complete with the works of renowned teacher Michelle Lane, the director of the famed Michelle Lane School for Autism. We committed ourselves to the Montessori method, with Maria Montessori's words our new mantra: "Never help a child with a task at which he feels he can succeed.” Self-sufficiency became the paramount objective and, in the process, our son demonstrated competencies that transcended any appellation or diagnosis. By age three, he was reading books and doing basic addition. His hyperlexia proved a benefit, as he devoured written texts and acquired information absent the need to pose inquiries which, for a reasonably non-verbal child, proved a nearly impossible task. Henry had cultivated an eminent visual memory, enabling him to recall minute details and retain volumes of information. Bright, precocious and increasingly confidant, his autism began to evaporate once again into the realm of uniqueness as opposed to "hindrance." 
That is not, of course, to imply that life is without its challenges. We struggle constantly with the label itself. The nondescript and seemingly benign medical term of "autism" often paves the way to our son being pigeon-holed, and disclosure of the diagnosis is often met with marginalization. Most recently, we fought our way through a public charter school, which sought to deny Henry Kindergarten enrollment on the basis of his autism alone, having never so much as met our son nor read any of the medical reports detailing the necessary educational interventions. I have spent countless hours attending meetings, drafting Individual Education Plans and meeting with experts in the field of childhood development.
Then, too, there is the financial toll. The cost of raising a child with autism averages about $40,000 per year. Where once my husband and I had a long-term financial plan, with six months savings in the bank and a retirement fund at the ready, we now live paycheck-to-paycheck. Our insurance company will not contribute to our son's therapies and, as a consequence, we have lost our home and depleted all our savings in the hopes of raising a young man who might one day live independent of our support.
My husband and I sometimes long for the days when we could spend an evening enjoying the company of one another, but we are unable to leave our son with a sitter for even short periods. His need for consistency and limited use of language make it difficult for him to be in the care of other adults. This has been burdensome to our marriage but, thankfully, we have made it work for the betterment of us all.
Autism is a space pregnant with loneliness and ambivalence. The most difficult moments are those wherein the smack of judgment becomes intrusive, rubbing raw the blisters of raising a child often unwelcome in this world. Standing amid the racks at Nordstroms, gingerly trying to cajole a screaming Henry into trying on a red, blue, green coat because there are none in orange like his previous jacket, I am acutely aware of the whispers and stares. The woman, who approaches and tells me that, were her child to conduct himself as such, she'd spank his rear end. The sales clerk, waiting for us to just leave. None can possibly understand this battle nor the events that have set it all in motion...and none can understand that through my humiliation, frustration, absolute blinding love for my boy, there is a glimmer of relief to hear my son's defiance...to hear him speak at all.
Even in the light of all our son's talents, we are not deluded into believing that his life will be simple. At the same time, we have promised that Henry will never be limited by his diagnosis. An excellent runner, we signed our son up for track and field. He plays violin. Henry loves to swim, and takes lessons every year alongside his neurotypical peers. Our lives don't rest in the doorway of autism. Rather, we have done our best to throw open the doors of the world, to enter the space occupied by "the rest of us," and to make a seat for our son alongside those without autism. We recognize that our son's life will be unique, but we are certain, too, that it will be one of Henry's choosing.

When I was eight years old, my father bought me a new bike for Christmas.

The next spring, our family went on a trip to the mountains, and my bike, hardly touched thanks to a snow-filled Colorado winter, was at my side. My sister and I left our cabin early one morning to make the short ride into a nearby town. My mother rarely allowed us to venture out alone, but the confines of a tiny mountain community eased her mind, and she was nostalgic for the days she had spent as a student at the tiny campus of a state college in the area. So, with the admonition to use utmost care, we took to streets lined on either side with crusts of unmelted snow and ice. We peddled up and down cobbled streets, up a steep hill with each pant of cold air stinging lungs and lips...

And then, I remember the slowness of my body, the sense that it would no longer comply with my demands, and the switch of darkness that clicked on and off with the ebb of my sister's voice, yelling my name. I awoke on pavement. My side ached, my hands and elbows felt a million tiny piques from the dampness and cold of the cement. I had fallen and had a seizure. The culprit was low blood sugar.

Back then, I didn't have diabetes. It was an isolated event, dismissed as the unfortunate ramifications of altitude sickness and a belly empty a bit too long. My terrified sister was consoled that she had served me well in racing back to the cabin and seeking the help of my father, and my parents were advised to feed me small, frequent meals.

I stowed my bike in the shed, promising never to ride it again.

Things change.

I was a graduate student at the University of Colorado when I met Walt. A perpetual student, Walt had dedicated himself to remaining a docent for as long as possible so as to continue racing his bike on the CU cycling team. Fascinatingly unambitious, Walt complimented my own pursuit of academia in the best manner possible: He provided all manners of distraction to keep me from my studies. Eventually, this took the form of casual afternoon bike rides. And so it was that I took up cycling as a hobby of sorts...a form of dispassionate recreation alongside a dear friend.  Some years later, long after Walt and I lost contact, that early lure of cycling had germinated fully, and transformed into a venerable love of the sport. I found my way to a Women's Cycling Team with racing ambitions.

And then, in 2007, I found myself again seated on the pavement after a ride. This time, 28 weeks pregnant with my second child, I looked to my husband and wondered aloud if the strangeness I felt - the light-headedness, pricks of numbness in hands and feet, the longing to close my eyes if only for a moment - might be an indication of something more pernicious.  A week later, I
was diagnosed with diabetes. First thought to be pregnancy induced and temporary, I soon learned that I had a latent and slow progressing form of the disease, that buried within me the body's own mechanisms were cannibalizing the islet cells of the pancreas.

There is nothing more frightening to a diabetic than the moment of hypoglycemia. There is a primal sense of urgency which engulfs a shaking, sweating body in one solitary drive : Consumption. That need to eat, to make the panic subside, to bring the mind and body back to a place of center, is nothing short of furious. For me, the threat of waking on the cold of the ground, flopping about in seizure, losing sense of body and self, was familiar and frightening as I glanced behind me at an eight year old self on the pavement alongside a new blue bicycle.  This time, however, I refused to tuck my bike back in the shed.

Five years later, I ride with a team of diabetic athletes, racing competitively with Women's Team Type 1 - Sanofi, and touring non-competitively with Team Type 2. I show up at the start line armed with food and insulin...a small, mobile apothecary allowing me to do for myself what my body should do of its own accord. I adjust my blood sugar like dialing the temperature of the thermostat - not too hot, not too cold.

Over the years, the focus of my workouts has shifted from acquiring mastery over my body to understanding how my body responds to food, activity, stress, and to the careful manipulation of my own habit in order to better athletic performances. I am acutely aware of how my body reacts to the seemingly benign permutations of daily life. Instead of just eating, consumption is now a conscious act with measurable consequences. Anger, anxiety, nervousness all induce quantifiable responses. It is an awareness of my physical self - a kind of consciousness - that is a gift granted amid pricks to chapped fingers, moments of urgency and fatigue, needles entering the fleshy terrain of my abdomen.

At thirty-three, I ride faster than I had ever imagined.