Wednesday, February 29, 2012

On March 1, 2012, Canadian Adam Biel will leave Ushuaia, Argentina, to cycle through two continents in 100 days. His goals? Break the Pan-American Highway world record and raise awareness and money towards autism.

Adam began raising awareness for autism in 2009 by cycling from Alaska toward Argentina, speaking to people along the way, and filming the stories of people living with or impacted by autism.

I know it sounds a bit quixotic and perhaps cliche, but the pinnacle of living life well rests in filling our interactions and relationships with love and compassion. We have more power than we realize - the ability to influence thousands of people around us - by simply looking upon all people and things with respect and value. Living with forgiveness and mercy. Looking for opportunity within challenge, and finding value amidst chaos.

Six years ago, my husband and I drove home from the hospital with our healthy baby boy. We talked at length about our hopes and dreams for son...what he might do and who he might become.
Two years later, we drove home from the hospital with our son, having been told he might never speak or run or ride a bike. That he would spend the rest of his life in our home, being cared for by us, until we which point he would require institutional care. That we would never hear him say, "I love you." We had a myriad of diagnoses: reactive airway disease, compromised immune function, expressive language delay, receptive language delay, auditory processing disorder, cognitive delay, speech and communication delay, fine motor delay, sensory processing disorder and autistic disorder. 
I had feared that moment. I thought the anguish would be too much for me to endure, the load too heavy to carry. Instead, we confronted the difficulty of those first moments after the dismal prognosis with determination. Some people play the hand they are dealt. We decided, instead, to live with intention, and to organize our life around the possibility that Henry could do or be anyone of his choosing. Instead of being consumed with fears and doubts, we made a plan to act with courage and do what we were told might not be possible.

The next year of our life was spent teaching Henry to talk. We handed him flashcards, and made him watch our mouths form the words. We would wait, hours, for him to repeat a single syllable. We taught him to follow basic directions, and respond to requests by pointing and, eventually, by brief utterance.

We taught him to wash his hands by breaking the action into its smallest parts, complete with picture cards of each task: turning on the water, moving hands to the running stream, getting them wet...
We refused to do for him anything we believed he could do for himself. We watched him wail and scream in terror and frustration as we made him pour his own cup of milk, learn to put on his own pants and shoes, hold a fork. We committed ourselves and all our resources to the shared belief in our son and his potential.

This is Henry today, demonstrating the refractive capabilities of water to his kindergarten class. He talks. He is smart and curious. He has friends, plays violin. He loves to read and make movies with his camcorder. He is an excellent sprinter, and ran the 100 meter dash on the state track team. He still requires supports in the classroom, and we still provide needed speech, behavioral and occupational therapies at a cost of nearly $50,000/yr., but my husband and I never complain. We know we are fortunate to be able to provide Henry these resources whereas so many cannot.
Examining his State Track medal

For some, riding a bike is a childhood rite of passage. For others, it's recreation. It's about the wind, whooshing by...scenery flying into a colorful blur...legs pumping as you move in harmony with your machine. That ease of motion, that licentiousness, is the lure of cycling.

I never dreamt my love of the bike would be my platform to evoke change yet, somehow,  cycling has given me the opportunity to bring awareness and provide hope to those living with diabetes. It has given Adam Biel the opportunity to help children like Henry.

There are approximately 10,650 babies born each day in the US. Approximately 960 of those children will have autism. Less than 10% will receive needed services because the cost is prohibitive.

I connected with Adam earlier in the week, and we found a shared desire to use cycling as a venue for change. More importantly, we gained some inspiration from one another. We talked at length about bikes and racing...and Henry. And the emotional experience that comes when we encounter extraordinary abilities or competencies - when we overcome the barriers in this life -  which motivates us to be better ourselves.  It's the moment when we move past the ordinary, and see the vastness of human potential. I wished Adam all the best on his journey.

Adam asked me to ride the stretch from Colorado to Wyoming alongside he and his team. A mere 160 miles of his 14,000 mile adventure. I'll be honored to ride at his side.

Life is full of uncertainty. Transforming uncertainty into hope takes courage. Making a greater contribution to society and leaving your mark on the world is really about finding your purpose, and nurturing that calling in the context of those things most dear to you. I believe we live amazing lives with unlimited opportunity and potential, and it’s up to us to look for ways in which to use those capabilities. In my case, the calling comes on two wheels.

To learn more about Adam Biel and Cycle Pan America, click here:

Monday, February 27, 2012

Four monks decided to meditate silently without speaking for two weeks. By nightfall on the first day, the candle began to flicker and then went out. The first monk said, "Oh, no! The candle is out." The second monk said, "Aren't we not suppose to talk?" The third monk said, "Why must you two break the silence?" The fourth monk laughed and said, "Ha! I'm the only one who didn't speak."

The path is always open to failures. It's really up to us to pave the way for success.

So it was that I set out for a training ride on Saturday morning. I was feeling somewhat less than inspired to cycle, and my enthusiasm was further tempered a worsening congestion in my lungs and the sense that I might be teetering on the edge of getting sick yet again. I struggled sluggishly through the first five or six miles, blaming the wind and the cool morning lack of sleep and my tired limbs. The next five or six miles rolled by as I stared at my stats the whole time - watts, cadence, RPMs, speed...
Finally, around mile 15, I stopped to check my blood sugar and grab some carbs...and I looked up from my bike. I realized, suddenly, that my preoccupation with going faster and harder and pushing myself to some predetermined endpoint meant missing an awareness of my surroundings and the messages being delivered by my body. I took the moment to re-set myself both physically and spiritually. I found my balance, resting gently in the drops and leaning back in the saddle. I found my streamline by pulling myself in and down, under the wind. I found my pace by adopting a cadence set not by my computer, but the tempo most comfortable in the moment. Shibumi. The zen of effortless perfection.

If exercise doesn't connect you to the parts of yourself that go beyond the physical, you are likely to throw in the towel.  Comparing my performance to others and cycling just to win can be both frustrating and intimidating...but cycling to gain mastery? To be faster and stronger? To go further? To manage my blood sugar and to keep myself well? That I can do. That will motivate me to keep going, even when I wish to quit.

For me, training is about an inner synergy. I challenge my body and my mind. Needless to say, the  twenty miles thereafter rolled by in better form.

I spent the next afternoon at an event being held by the Rocky Mountain chapter of JDRF, kicking off the Ride for the Cure. I was asked by several people in attendance why I cycle with both Team Type 1 and Team Type 2. There are reasons practical - my own diagnosis sort of straddles the line between the different respective diabetes diagnoses, and it was really a matter of the person with whom I first got in touch - but there is another reason, too. I really like the experience of cycling in a Tour de Cure.

I am known as viciously competitive. My husband and our good friends will tell you that I can frame even the most innocuous of tasks into some brand of blood sport. I have an innate ability to see everything I do in the context of "winning" or "losing." It's why I love to race. It's why the first fifteen miles of my training ride were pure misery.

Cycling in a Tour de Cure is different. It's the antithesis, in many ways, of competition. It's exercise in the context of knowing exactly what it is you want to do, and the process of getting there. When you approach the starting line at a Tour de Cure, and you see a gathering of other people with diabetes, wearing red jerseys and, in many cases, cycling their first century ride, it is an amazing experience. No one wakes up and decides to head out for a 100 mile spin on the bike...and especially not the recreational cyclist. These are men and women who have trained for this day...they have transformed their lives to be able to finish this one event.

Most of us have been raised with certain ideas and expectations of what we can and should do. Most us lead complacent lives. We get stuck in ideas, habits, ways of seeing life, ourselves, the universe, what we do, what we don't do - and these ways of seeing are the path that is always open to failure.

The process of shedding those illusions, of taking agency over one's own life and health is transformative. It's not about competing with another's about self-discovery, pushing back against the perception of limitation, and understanding precisely what it is you wish to do. We're only alive for a certain period of time in any given lifetime and we're moving against the clock. It's a race to see if we can wake up before we go to sleep again. With diabetes, that thought is ever more at the forefront of the mind.

To be there in support of those who have taken control of their diabetes and life, who have stepped outside the expectations they set for themselves to push a little harder than they thought possible, is truly an honor. It's not about the day or the ride, the event or the amount of time elapsed start to finish. It's about the process. It' about getting there...being there...and paving a road to success. It's not about what happens on the bike, but about what it means in the context of a lifetime.

I tell my kids that there will always be an excuse to fail. Diabetes. Autism. Personal loss. Hardship. What makes you better is found in the reasons you push forward to succeed.

Monday, February 20, 2012

For the most part, diabetes is just a big source of inconvenience. Then, there are days like today, wherein diabetes is actually a problem. I've been fighting a cold since the weekend, which means that my blood sugar will inexplicably climb no matter what I do or how much insulin I deliver. Hence, the picture to the left, representing my morning fasting number. Not good.

Not only is this a problem in terms of managing my blood sugar, it is a problem in terms of managing my day. I still have to go to the gym and the office, help the kids with their schoolwork and do all the other assorted, banal tasks of Monday morning...

...but now, I will have to do them in a fit of diabetic rage. That's right. If you have diabetes, or if you live with another person who has diabetes, you are familiar with the circumstance:

I will innocuously check my blood sugar, realize I am high, check three more times just be sure that I am trending up and not down, retaliate with a dose of insulin to try and counter the unexplained jump in blood sugar, and pay for it an hour or two later when I bottom out. That will probably happen when I am in the car. So I will be driving down the highway, trying to steer with my elbows while juggling lancet, strip and meter. This usually happens when it is not sufficiently light out, by the way. All the while, I will be cussing like a sailor and slamming stuff around and flipping random people the bird because they dared to honk at my car as it is careening into the oncoming traffic as I try to locate the DEX 4 in my glovebox.

By day's end, I will probably have gone through about 30 test strips. Most of those will have been used in a panic, as I try to figure out if I am up or down. The rest will be the strips I drop in the car or on my bike or while trying to test and multi-task in some other capacity. I will not, however, have gone through a single lancet because, as any diabetic knows, those are only changed on a leap year or when the old lancet actually begins to show signs of rusting (whichever comes first). That assumes you need a lancet at all. I can usually just pinch my finger and re-open an earlier wound...and it might hurt less than the three year old lancet I have on hand.

The rest of my day will be spent in a creepy fog, wherein I try to stay awake at my desk with my chin propped on my left hand as I try not to drool.

Just one of those days.

Friday, February 17, 2012

A friend of mine had a nice, quiet drive home after promising a cookie to the first of her three children able to successfully lick his or her own respective elbow. Parenting gold.

I have , I confess, committed my share of similar infractions. Here, I purge my guilt:
  • Once, in a busy doctor's waiting room, while trying to keep my toddler from touching the office contagion, I busied Midori by telling her to seek-out the banana in the Eye Spy picture book. There was no banana. It was just a cruel ruse.
  • I cheat in Candy Land. Not to win...but to make the game end sooner. Seriously, a Candy Land marathon is like the seventh layer of hell. Ever been 2/3 of the way to King Candy, and draw the Gumdrop card, or get sent all the way back to Grandma Nut? Yeah, that right there will bring you to your knees. I don't care who you are.
  • Our bedroom door is never locked, and the kids are welcome to come in anytime, at will. But they won't enter between the hours of five and seven, because those are the hours during which I have told them that, "Mommy is busy wrestling the monster hiding in the laundry basket." You wouldn't want to get eaten, would you?
  • I try to send thank-you notes to everyone who purchases gifts or attends events for my kids, but they are often months late. And, if I don't like you, I will dump an ass-load of festive confetti in the card, just to piss you off. I do the same thing when I send out Birthday invites. It's my passive-aggressive way of feeling better about things.
  • I have consumed wine from a sippy cup. More than once.
  • I gave my daughter a spray bottle filled with leftover Bitter Apple and vinegar (to keep the dog from peeing on the Christmas Tree), and told her it was "Monster Mace" so that she would quit coming in to our room at two in the morning. She now Mace's anything that crosses the threshold, and most especially her brother, who smells a lot like a salad.
  • Sometimes, when I know my kids are not paying attention, I alter the content of their bedtime stories. Ever read, "Furious George at the Aquarium" or "Strangers Have the Best Candy?"

In all, it's an innocuous list. At least, I think so. It could be worse:

Tuesday, February 14, 2012

Happy Valentine's Day.

It's easy to be a cynic when it comes to love. After all, so many marriages falter, bend and break under the weight of the day-to-day hardships...the motions and currents of life.

In April, 2004, I walked down the aisle with my husband. We've been side-by-side ever since. Our wedding was a casual affair. So casual, we’d not rehearsed a second of the observance before the event.  It turned out to be truly an occasion of joy and laughter, despite the seriousness and solemnity often associated with such ceremonies. I slipped the ring on my husband’s right finger…a mis-step that made the children standing near us burst into laughter and I quickly followed suit, adding further to the amusement of the family and friends who witnessed it.

And afterward, our families - having known one another for years prior - toasted to our future together.

That forward movement has proved a long, and winding road. We've weathered together the sorrows of losses, the fears of unknowns when confronted with difficult diagnoses, battles on behalf of our children, and the pains of a thousand hardships. We've celebrated together weddings and births, new opportunities and wins, finish lines crossed and mountains summitted. And always alongside the other, better half.

I learned long ago that our family is never complete until Dennis walks through the door. The children and I wait for him each night, for the center of our house - and, in my case, my very self - to waltz in with arms open (they always are) and a kiss for the each of us. In my darkest moments, this simple ritual brings my feet back to the floor, and grounds me for the road ahead.
When my husband and I first married - in those early days when love came in torrents and crashes as opposed to the softness and comfort of an old friend, when we first navigated the making of a home in proximity to the other person, and when we first woke to the breath of the other - I would lay in his arms and think, "Everything is fine so long as he is near." So it has been ever since. The worst moments in my life have been made all right by Dennis and his gentle gaze, the warmth of his arms. We have found our space in the world, and it is with one another.

Monday, February 13, 2012

I spent the weekend riding, for the first time, with the new team. We were in Florida for Miami's inaugural TdC - a ride that seemed particularly appealing given the Colorado snows in the weeks prior to my departure. I had envisioned cycling long, ocean-side stretches in temperate weather, the warm sun and a chance to get out and ride among good friends.

It didn't turn out quite like that.

I arrived at Denver International Airport for my flight to Miami with time to spare. I am punctual to a fault and, when it comes to flying, I prefer never to be rushed. An unexpected snow had fallen overnight, but my flight was still scheduled to depart on time. All good. I made my way to the baggage check with my bike well secured in its least, generally well secured. I had elected in haste the night prior to forgo zip-tying my chain. More on that later.


Bag check turned out to be a nightmare. The entire system had been knocked-out thanks to the snow, and the line at the counter stretched through the airport. I stood in line and waited...and waited...and waited. As the time approached 7:30, and with my flight scheduled to depart at 8:05, I still had still twenty or thirty people ahead of me. I was near panic.

Luckily, a woman jumped from behind the check-in counter, and called all those waiting to board the Miami flight to the front of the line. I managed to get my bike checked before 7:45, and raced toward the TSA screeners where I was, yet again, briefly held up by a teenaged boy trying to fly with a full-size container of Axe Body Spray. In doing the young man a true service, the canister of mephitic parfume was confiscated by an agent, and I made my way to the gate. By 8:02, I was boarding the plane and, by 8:05, we were taxiing to the de-icing station.  I settled in to my seat, and relaxed for the five hour flight.

Upon my arrival in Miami, I went to baggage claim in search of my hard case. It was nowhere to be found. I sought an agent, who informed me that all the over-sized bags on my flight were "missing." For the next twenty minutes, I watched as scores of men and women from baggage claim went racing about in search of surfboards and water skis, and my velo. Finally, they found it mis-routed to a different baggage carousel but in otherwise good order. I claimed my Trek, found teammate John Anderson, and we made our way to the hotel where a bewildered Bill Arnold was trying to figure out what had taken us so long.

The three of us made our way to a little Cuban restaurant for food and drinks, and tried to formulate a plan for the next morning. Local TT2 member Joe Trotter and his finance, Donna, met us at the restaurant where we finalized logistics before heading back to the hotel to assemble the bikes.

Note to self: There is a reason zip ties exist in the world. I managed to piece my bike back together, and was rather pleased with my capabilities in this regard given that I am neither inclined mechanically nor particularly proficient at bike repair. There was one glitch: The chain was hopelessly twisted, and I could not figure out how to get it back on the derailleur. I quickly invited the chivalrous Bill and John to give it a go. Bill was no less confounded than I...but John managed to work it out in a matter of seconds, and not without first laughing at the ensuing confusion.

With bikes assembled and a plan at the ready, we were prepared for an inclement morning ride. Florida had been in the middle of a cold-snap, and the forecast high was a mere 54 degrees. We were to set out around 6:00am, with temperatures in the low 40s. Making matters worse, gale-force winds were predicted, with gusts exceeding 17MPH. Not the sort of thing I had in mind when I signed up for a weekend in Miami.

As we waited at the start, I was regretting bringing only the fingerless gloves.

The ride commenced, and Bill, Joe and I fell into a nice pace alongside a group of local cyclists. I'd checked my sugars before we set out, and was hovering around 135. That's a little lower than I like to start, but good enough. We rolled along through city streets and Cuban barrios, zig-zagging a course through the heart of Miami. The beginning of the ride was filled with the perils of urban cycling: starts and stops at every light and intersection, debris from falling palm fronds as the wind ravaged the trees, and sudden loops that seemed to wind and backtrack in the opposite direction. At several exchanges, one group of cyclists would be heading up the road only to loop back the same way, passing those oncoming from behind.

After a good twenty or thirty miles, Joe made a stop to repair his handlebars which had slipped from position. Bill and I continued on until he pulled ahead of myself and a pack of other local riders. I cycled the next ten or so miles accompanied by a group of cyclists from a Cuban team sponsored by Ultra, and a woman with whom I talked about time trials at some length. It was good company and, in the heart of the pack, I was able to ride a bit of a draft so as to avoid the now pounding winds.

As we approached an intersection, one of the Cubans broke a spoke. In one of the more heroic roadside repairs I have witnessed, his teammates set to wrapping the spoke so he could continue to ride. I went ahead with the other woman, and we took turns pulling against the gusts.

As I approached a rest stop, I spotted Bill pulling out toward the route ahead. I called out, and told him I needed to stop only to check my blood sugar. I deftly stabbed my finger, waited five seconds...and saw the reading: 37! I had felt fine but, notoriously, I have poor hypoglycemia awareness on the bike. I grabbed a bar and a Chocolate9, and was on my way.

I spent the next twenty or so miles chasing Bill. Bill is made to cycle. He is long and lean, and he can generate a lot of power over distances. He trolled along patiently until, just before the halfway point and at a series of exchanges, Joe came riding up to us. He spun around, and the three of us went on toward the 50 mile rest stop.

Joe told us about a guy he met along the way, who was doing his second century ride after having been diagnosed with diabetes. The two men had ridden alongside one another for a stretch, talking and sharing stories. There is always a common thread amongst those who have this disease, buried in the narrative of how we came to diagnosis, and what it has meant in our lives.

Bill and Joe had much greater dominance against the wind. One of the guys with whom I train recently did a study on muscle strength and power, looking at the watts generated during endurance cycling and running. Peak power was about 60% lower for the females when comparing absolute values, despite the fact that all of the men were heavier. Men had generally faster finish times and higher power outputs. I was thinking of Kent and his study as I watched Bill and Joe, folded over in the saddle, powering through the gusts as I was literally trying to just hold my line.

At the same time, I could see my teammates turn and look back...check in...make sure I was not dropped. At one point, I looked at Bill and said, "It's all good. Just go for it!" The two men, ever the gentlemen, smiled.

"Not until you check your sugar. We need to know you are okay. Then we'll drop you."

Good teammates. I am truly lucky to ride with such great guys.

I checked. 115. Good number. I grabbed a banana to keep from falling too fast, and we pulled out. I rode the next ten or fifteen mile stretch with a local Miami guy. We chatted for some time about his cycling and his father's diabetes, how his dad had not been able to take control and how he found his way toward cycling as a mechanism by which to avoid the diagnosis delivered his parent.

At this point, I caught back up to Joe, and rode a few stretches with him yet again. Bill, by this time, was far ahead of us. Joe and I would lose sight of one another for a bit, and then find each other again as we moved along the road.

During our respective rides, all of us noted that we experienced long durations of cycling without another rider in sight. It is an eerie feeling...and an unusual circumstance when riding this kind of event. Usually, you have another cyclist in your line of sight at all times. Two, three, or even a small peloton of other riders. The size of this ride, however, and the relentless challenge posed by the wind, the flats with no breaks from pedal stroke and the different capabilities of each rider caused us to spread out along the course. For mile upon mile, each of us cycled alone, worrying we had missed a turn or overlooked a road marker...waiting to see if we caught glimpse of another rider. With no one else to challenge the wind, and with the curiosity of being alone on this sort of ride, these were the hardest stretches of the course.

At the 85 mile mark, I could feel my blood sugar falling. I had one Choclate9 left in my saddle bag, and debated on avoiding the rest stop in hopes that it would supply enough carbs to get me through the next 15 miles. I checked one last time, saw the number (52) and knew that I needed more fuel. I took advantage of the rest stop ahead, had a banana and a couple orange slices, and made my way through the final stretch.

The descent into Key Biscayne was lovely. The view of the ocean was magnificent, and the tree lined beaches looked inviting despite the cold. Still, I was ready to be done.

John Anderson had finished the Metric, and was already resting peacefully back at the hotel. Bill and I were frantic to return and pack the bikes so as to make our 5:00 flights home. With less than two hours to get on a plane, we jumped in the car and headed for the hotel. The disassembly was a bit frantic, and I was grateful for John's expertise. We managed to get the bike packed in a matter of a few minutes. I threw off my kit, tossed on a pair of jeans and a t-shirt, and ran to meet my airport shuttle.

Yet again, I was faced with the prospect of missing a flight. The ticketing agents in Miami were confused about the process of checking my bike, and the TSA line was long and slow. I managed to get to my gate with four minutes to spare, but without any food. All I'd consumed all day long was a series of bars, Chocolate9, bananas and oranges and a peanut butter bagel. I knew I would have a delayed low, and I knew it was likely to come on the return flight.

So it was.

I took my seat on the plane, and immediately ordered pretzels and some M&Ms. Three hours later, I was devouring both after I tested at 46.

I was greeted at the baggage claim by my husband and my kids. Henry spotted me first and gave me a wide grin. Midori came running up and threw her arms around me. Despite the short nature of my excursion, I had missed the three of them terribly. A kiss for my husband, and we headed to supper.

In all, I felt like it was a good ride. I stayed on top of my lows, which is hard since I have such diminished awareness when I cycle. Next time, I will probably cut my basal insulin a little further...maybe to 1/ prevent the drops. Generally, though, I felt physically good. The four of us had some great conversations with some wonderful people, too, and did our part to show that diabetes can be a lifestyle and not an impediment to success. And, of course, I was grateful to spend the weekend with my teammates, whose generous nature and willing spirit kept me moving forward over those 100 miles. (A special thanks, too, to Joe's fiancee. She graciously drove us to and from the ride, and supported us all throughout.)

Friday, February 10, 2012

All packed, and ready for a morning flight to Miami where I will be joining my three teammates! Bill, John and I met at training camp in Tucson, and I'll be seeing Joe for the first time. I am looking forward to cycling in weather above the freezing mark and seeing actual stretches of real pavement as opposed to the tile of my entry way floor from the heights of my trainer. (As an added bonus, I doubt these cycling partners are going to stop me mid-ride to announce that they wet the bed, need a cup of milk or lost their dolly in the shed. And they probably don't sing the words to "Chitty Chitty Bang Bang" during ascents, either.)

My endocrinologist made some changes to my diabetes regimen last Tuesday, which always makes me a bit nervous before long rides. I like to have a few solid stretches under my belt before embarking on a century with a new plan for managing my blood sugar. I got in a good seven mile run this morning, with a starting BG of 158 and an ending BG around 96. That seems to bode well...but then, I had a series of inexplicably high numbers on Wednesday and, as happens, over-corrected leaving me miserably low.

45 minutes and two Jolly Rancher's after I first dropped.
It's always something of a chore to pack all the needed diabetes accouterments. I have this persistent fear that I will find myself in the TSA line at Denver International Airport, only to realize that I have left my insulin at home, or that I failed to pack my needles. And then I go through it all over again when I get on my bike, at the starting line, checking and double-checking to ensure I have everything I require.

I never go anywhere without a stash of LaraBars. This is not just the habit of a diabetic (I am never without a supply of carbohydrates), but of a vegan. One particularly hungry night at training camp, we were served a meal of bean soup, sauteed zucchini and yellow squash, and about seven dishes of various meat-laden pastas. My gluten-free counterparts (Celiac and Diabetes often walk hand-in-hand) and I made a supper of the soup and veg. Hardly a satiating dinner, I made the way up to my room and devoured a couple Coconut Cream Pie LaraBars, and went to sleep happy and full. I found myself in a similar predicament a few weeks back, when a well-meaning pharmaceutical rep came to the office with lunch - a turkey and cheese sandwich. I had assumed we were dining out together, and that I would be able to order my own selection. Faced with a lunch hour meeting and a full patient book thereafter, I resorted to the desk drawer's stash of Cashew Cookie and Peanut Butter & Jelly bars.

So, with my kit and shoes, pills and shots, lancets and test strips and quick-acting carbs and, yes, LaraBars, I am set to go! Fingers crossed for an uneventful flight in the morning, and an awesome ride with dear friends.

Monday, February 6, 2012

According to legend, a 15th century Japanese shogun named Ashikaga Yoshimasa returned his favorite celadon tea bowl to China. The broken bowl had been mended with  heaps of chunky staples. Yoshimasa was displeased with the appearance of the repairs, and insisted they be done again in lacquer and powdered gold. Known as "kintsugi," this simple fix became a fashionable form of artistry by the 17th century - so much so that people were known to smash their tea bowls on purpose in order to have them embedded with the golden veins of rehabilitations.

The Japanese, of course, have a long cultural tradition of appreciating those things one might perceive as  "defective" as part of the aesthetic of wabi-sabi, and the acceptance of imperfection as part of transience, the serene melancholy brought by an object's inevitable limitations. Here in America, where we prefer the shiny and new, I have always enjoyed the art of brokenness. One can't help but look at a bowl streaked in flecks of gold, held together by an art born of necessity, and wonder about the cause of the damage. A quarrel between husband and wife? A careless child? Too much sake?

When something has suffered, it suddenly becomes an object of interest. It has a history...a story to tell. It is more beautiful because of it's damage.

We are like those broken bowls.

My children had a violin recital over the weekend. Midori had been diligently practicing her piece - Atacama Crossing - for weeks. She had figured out the abrupt changes from string to string, the tempo of the piano accompanying her, the smooth strokes of the bowing back and forth, note-to-note.

Truthfully, Midori loves everything about recitals. She loves wearing her most beautiful dresses, her slick black shoes. She loves standing on stage and playing decisively to a round of anxious applause. She loves being front and center, with her father and I staring on in adoration, and her friends smiling gleefully as they watch her perform.

Henry, on the other hand, is aloof and apart. He prefers the quiet space of the practice studio and the familiarity of routine. He has created systems for himself...a way in which he orders his world to make sense of the unpredictable, the spontaneous, the resonant sounds of a life in which he is able to decipher only those things he can first prognosticate. The unexpected rattles him to his core.

He likes watching the other children perform their pieces and, ever the critic, sits in rapt attention as the older students play Vivaldi, Mozart, Bach. His attention wanes at the squeals of the youngest pupils, who screech out the most basic melodies on a single string. He laughs at their follies. Henry has no desire to take the stage alongside them, to be among them, and to stand as the center of all attention. But, on this weekend, for better or for worse, Henry was the beneficiary of a lot of attention.

My daughter eagerly put on her best pink taffeta dress, and her little white shrug with tiny silvery pearls. She twirled down the hall, and perched herself on the sofa, where she sat "like a lady" all the while badgering her father and I to hurry along so as to be on time. My husband and I were immersed in feverish negotiations with her brother, who was refusing to don anything approximating "formal attire." Finally, I managed to wrangle and cajole Henry into a pair of black dress slacks and a button down shirt, a matching vest and some canvas slip on shoes that did not exactly work...but were not too egregiously out of sorts.

The recital was at a small church, in a sanctuary with giant wooden beams and a polished floor that made Midori's shoes clack and click as she ran about to get set up. Light - red, yellow, green - flooded in through the high stained glass windows. My husband and I took seats in the back, in case we needed to remove a disquieted Henry.

I looked down at the program, and noted that Henry was to perform second. Good. He would have a moment or two to settle his nerves, but wouldn't be subject to a long wait before going on stage. I had no doubt that his kindly music teacher, Erron, had the same notion when she positioned him in the line-up.

The first piece was short, and then it was time for Henry to walk down the aisle and ready himself to play his violin. I took him gently by the hand. Midori shot me a look, and whispered, "I'm coming, too." No, no. I explain. Henry cannot make this walk alone, and Midori knows it. "I can walk by myself, but Henry can't. I'll help him." I conceded. Perhaps, I thought, the distraction of his sister might prove a force of calm...

And so the three of us walked down the aisle to the front of the church. Erron exchanged a generous smile with Henry, and then slipped her hand in place of Midori's. We all saw it. He looked back at his father and I, and then Henry's hands began to dance in front of his face. His fingers spun back and forth in a rhythmic, almost hypnotic, motion. This movement is a hallmark of autism, much like spinning in circles and the uncontrolled flapping of the hands. Henry is trying to find his center. He is trying to come back up for air. To Erron and I, it is a moment of shared panic. We knew everything was a second from fracture. To the rest of the room, he is simply a boy with an odd mannerism.

And then, Henry started yelling. Vocal undulations that had no meaning...indecipherable noises that trumpet fear and anxiety. I gave Henry a firm look to convey the impropriety. Nothing. He raised his voice louder still...and the words poured from him, a slew of obscenities. He screamed every foul word a six year old boy might hope to know. His laughter at those utterances - a kind of nervous hysteria - only made the room more uncomfortable. Whispers, stares. Every single eye shifted from boy to mother and father, and back to boy. Erron and the piano player, Kobus, traded looks of distress, embarrassment, uncertainty. Henry was blissfully unaware, feeling only the cold of his hands and the terror of being exposed. "Smells like poop! Poop!!" He screamed and laughed, and looked to me for help.

I stood up, amid the sting of a thousand stares, the eyes of the room boring in to the back of my skull, the whispers about "that poor mother" and the million sentiments of, "If it were my son, I'd..."

I got up, and smiled compassionately at my child. Like him, I was too afraid to look at another person in that room. I knew that the stares were not forgiving, but capricious. Uncomfortable. Humilaited. And so, I looked at Henry, and I told him to look back at me. "We'll do this. Together." I knelt down next to my boy, placed his hand on his violin, and put his bow on his string. I caught only a glimpse of my husband trying unsuccessfully to restrain a determined Midori as she, too, marched on stage and planted herself behind her brother. "Come on, Henry. I'll help you." Midori knew nothing of the adults in the room and their consternation. She only knew that her brother needed help as he was languishing in unease.

And so we got through it, the three of us. We stood together as families do. I walked Henry down the stairs, back to the seats in the corner of the room, where he settled in as if nothing had transpired. Midori sprinted down the stairs and grabbed her violin. She played her piece beautifully.

Afterward, our daughter sat with her friends and shared cookies and juice. My husband, Henry and I sat alone. Not a single person who had been in that room glanced our way.

Every moment has something to teach us. In my hardest days, in the instances in which the weight of raising a child unwelcome in the world seems almost unbearable, I am consoled by the strength that Henry has given me. He has made me brave. He has taught me that, whatever comes along in this life, I can handle it. I can put one foot in front of the other, and walk through it...grow from the experience of it...and be content. He has given me the ability to shed my vanities and act with honor, integrity, absolute blinding love.

We are all a little bit broken. The fissures of my suffering were on full display this weekend, and to a room full of strangers no less. But those pores of affliction, of hardship or sorrow, are filled with aureate...infused with drops of beauty and tenderness, and a history I would not have re-written were I given the happenstance. Henry might have stood before the audience, played acceptably and walked quietly from the stage to his proud parents. That's what the other children did. The story, though, would not be so evocative without the bits of broken and the gentle mending of familial love.

Kintsugi. Wabi-sabi. The imperfect is beautiful.