Friday, January 24, 2014

I grasped the toddler chub of Midori’s tiny hands, her arms swinging wildly as we made our way across the street, to the urban sanctuary of the park near our home. My daughter tore away from me, and raced up the hill to a small pond near the community garden. I found her staring into the glass surface at the reflection of her round face, the lily pads floating like small green tortillas, and the ducks lined up like battleships as they waited for a crumb of bread.

Look, Mama! The nubs of her fingers have disappeared inside the shiny red plastic purse she has carried with her. Acorns, rocks, pennies rattling inside a tin Band-Aid box, the sticky skin of an onion peel, a piece of white paper that she tells me looks like a thin cloud. All the reserves of a three year old in love with the world come tumbling out of the purse and onto the cement rug near the pond. Finally, her eyes are alive at the realization that she has found “it.”

Proudly, she holds up the squashed remnants of a small tangerine. Her hands are covered in the syrup of the crushed fruit. Bits of pulp cling sternly to her skin, and the long strands of pith hang down like exposed veins. No sooner do I frown at the mess than Midori, reading my expression, crumbles on the concrete. Her face is red and hot, and she has spit coming out of her mouth as she makes soft crying noises. When there are no tears left, she offers only, I brought it for you, Mommy. So you wouldn’t have to worry about your diabetes. So we wouldn’t have to go home if you needed to eat.

I wanted to be far away from that moment, when I realized the impact on my daughter faced with the unpredictable reality of a mother having a chronic disease. I wanted to be tethered to a runaway balloon, like a tiny dot in the sky, weightless and unburdened. Instead, I was staring down the accusation of time stolen by diabetes. Not the months and years that diabetes can poach if neglected, but the seconds, minutes and hours embezzled by checking and correcting blood sugar.

Diabetes can be a disruption to the rhythms of living. It is waiting in the corners of every moment I am alive, sometimes remaining quiet and sometimes galloping into the room. That my children might be conscious of its presence, and at such a young age, was a revelation. My daughter’s small provision, her mangled tangerine, was the bracket that held her worry at a distance so that she might fear less, believing that her meticulous planning would secure an afternoon together without the threat of disarray.

Years before my diagnosis, I too had vicariously lived the legacy of diabetes. My grandmother had been diagnosed with type one as an adult, and my earliest memories of her often involve watching as she measured each particle of food with porcelain scoops, observing the shimmery droplets of blood she squeezed from the tips of the fingers that rubbed soap on my back in the tub, scrutinizing the slick needles that she drove into the pink skin of her hips. She tended to her diabetes with the gentleness of a woman tending to a crying baby, without any hint of bitterness or loathing. My grandmother took the time she needed to care for herself, like little bits of string that she sewed through moments and days and on into years until, at last, it became the blanket in which I wrapped myself after diagnosis, taking comfort in the warmth of her legacy and the vibrancy of her life.

My own mother, by comparison, treated her type two diabetes as though it were a little bit apart from her and the reality of her body. It was an abstract element that made her depressed and hopeless, and she could never grab hold of that thing, embrace it or discard it, push it aside and rise anew. As she aged, she was buried under the weight of that burden until, at last, she was bathed in the manifestations of the disease she had neglected. Her body was swollen, and fluid would literally seep from under her skin, through her pores, puncturing the taught flesh of her legs and stomach. Her feet were cracked. Her limbs were numb. She spent the last years of her life on the brown sofa next to the window in the living room – a room I often joked should be called the “waiting room” as my mother sat only in anticipation of finality. That was her life. We sat together sometimes; with me watching the two green apples of her eyes fill with sadness, stroking her hair because it was the only part of her that didn’t ache. I remembered lying next to her as a child, pressing my nose into those same thick, black locks and smelling the yeast from the bread she baked, and I thought that you didn’t have to die to be gone.

Staring into the wells of my daughter’s eyes as I deflated her pride at having taken such careful measures to shelter me from the impacts of my own disease, I wondered about the legacy my life with diabetes was imparting. I wondered if my daughter had inherited my sense of worry, as I had promised I would never inherit my mother’s place next to the window. I wondered if I was making the best of living well with diabetes or if I simply seemed to be coping acceptably with the circumstances I had been given.

Since that afternoon in the park, I have been mindful to speak honestly and openly with both my children about diabetes. I remind them that checking my blood sugar is an act of self-love and never a reason to be fearful or insecure, that making adjustments is part of taking care of my body so that I might be fully focused on those around me. I remind myself that my experiences with diabetes can shape my children for the better, making them more compassionate and empowering them to take the best possible care of their own bodies. I am unapologetic about taking time for myself when diabetes demands it, just as I would take time to care for a child with an emergent need.

No matter how much I wish diabetes would not leave marks on the animas of their beings, I recognize that the imprint can come in the form of painful laceration or a tender graze of the skin, and I choose the latter. It is a careful recalibration of the moments that we all share as we throw open the doors to living with diabetes.

Wednesday, January 8, 2014

I had imagined a life. Somewhere, someone is probably living it. I am not.

Five years ago today, our son was diagnosed with every condition you can’t imagine: communication delay, receptive language delay, expressive language delay, central auditory processing disorder, sensory perception disorder, compromised immune function, fine motor delay, gross motor delay, hypertonia, autism. (That is the short list.)

There was a lot of pain and disappointment in getting to that day. Our son was born prematurely, and had emergent medical challenges from the moment he came into the world. As he grew, he was anxious and sometimes violent. He was dismissed from six nursery schools. He had been hospitalized and nearly died from multiple respiratory infections. He had seizures. He couldn’t speak, and he had eaten through every wooden object in our home – gnawing incessantly at his bedposts, the railings on the stairs, the coffee table. We had taken him to doctors, speech pathologists, occupational therapists. It was hard.

And that day was hard, too. Not because he had autism. We knew he had autism. We had spent three long days at the Child Development Unit in Children’s Hospital, watching a team of experts watching our son. All of us, spectators to his failures. All of us, knowing he was autistic.

The hard part came after the diagnosis. We sat, in silence, for a moment. I was waiting for someone to tell me what to do next…what services to access for him, where to begin looking for providers, what kinds of things would be covered by our insurance. Instead, the panel of medical professionals asked me, “How do you feel about Henry, having autism?” And when I made the important inquiries, they replied, “We can’t tell you those things. We don’t know.”

I was pregnant. They told me our daughter might share the chromosome defect that caused Henry to face so many challenges. I had just been diagnosed with Type I diabetes. The world was coming apart.

I thought of my Grandmother, who also had Type I diabetes. I thought of the last book I brought to her, as she lay dying. She loved adventure novels. I gave her Touching the Void by Joe Simpson, recounting his and Simon Yates' successful but disastrous and nearly fatal climb of the 6,344-metre Siula Grande in the Peruvian Andes in 1985. After plunging 150 feet, Simpson regains consciousness only to realize that he has a broken leg, and his only hope of surviving is to reach base camp. He cannot focus on the big picture, of getting to his end goal. The task is so monumental that he fears he will lie down in the snow and die. Instead, he focuses on making it to the crevasse ahead of him, or the steep rock ledge. Of moving for another half hour, fifteen minutes, ten seconds. Eventually, after three days of crawling and hopping, he makes it to base camp.

That would be my life for a long, long time.

I couldn’t bring myself to look ahead. I couldn’t consider all the things I had to do, all the things that might go wrong, all the possible culminations of my efforts. Instead, I would wake up and decide, “Today is the day I will teach Henry to wash his hands…to use a spoon…to put on his pants.” I couldn’t think about the thousands of dollars we were spending every month to access speech therapy or occupational therapy….the depleting of our life savings and the stack of insurance denials. Instead, I paid the bills one by one, thinking only of how I would afford that particular service for that particular month. And, somehow, each effort stacked on the other, and it became a life not of parts and pieces, but one of overcoming and transformation.

I have learned what it is to be human.

I learned that we are hardwired to experience pain. We are, in fact, built for it. As much as we run away from hurt, it is intrinsic and important. In our efforts to dull its sharp edges, to medicate it away, to assuage it into oblivion, we miss the crying baby that is our own sometimes anguished existence. The only use for pain is in surrender to it, so that we might someday walk through the other side as better people.

I learned to love unconditionally. I could not afford to love my son for the things he might do in life because, based on that first bleak prognosis, he might have done nothing at all. I had to love him just because he was mine to love. I had to love him as he was. I had to love all the parts of him, including those that had been pathologized and labeled “autistic.” And then, I wondered, could I love myself that same way? Without condition? And I learned that I could.

I learned that the future is really just a terrifying, heartbreaking illusion. It doesn’t matter who you are, or how healthy your children. There is no such thing as “the future.” It’s just an idea that we have, along with a lot of other ideas that are not the least bit rooted in reality. It’s a dream, an apparition, a myth that we weave because if this moment were the only purposeful one, how would we spend it? Doing….this? And so, I learned to make my moments count. Not absolutely, of course. No one can live each moment with intention, but we can find a meaning in every single day of our lives.

I learned that there is a diverse pool of humanity, and it is that very range which makes possible progress in science, the arts and humanities. Variation has value, and what might seem outwardly disabling might only be limiting because of a narrow world view as opposed to something intrinsic about the person. “Ability” and “disability” are situational, contextual concepts.

And so, as it turns out, I learned that the life I had not planned and perhaps did not want has turned out to be a good one. The best one. And, of course, my only one. I don’t love my life, my children, myself because it is a strategic investment in what might someday be. I love because it is enough, all on its own.

Five years ago, I could not have known.