Monday, December 10, 2012

The day my mother died I wrote in my journal, A serious misfortune of my life has arrived. I suffered for more than one year after the passing away of my mother. But one night, in the highlands of Vietnam, I was sleeping in the hut in my hermitage. I dreamed of my mother. I saw myself sitting with her and we were having a wonderful talk. She looked young and beautiful, her hair flowing down. It was so pleasant to sit there and talk to her as if she had never died.

My mother.
When I woke up it was about two in the morning and I felt very strongly as though I had never lost my mother. The impression that my mother was still with me was very clear. I understood then that the idea of having lost my mother was just an idea. It was obvious in that moment that my mother was just an idea. It was obvious in that moment that my mother is always alive in me. ~Thich Nhat Hanh

When someone dies, you realize how many of your memories are history revised. I remember so many things about my mother and, as I have grown, the context of those memories has changed. My mother was kind and gentle. She was awkward in public, but I liked that about her. She loved her children deeply, and she was wrapped in the possibility of the people she was raising.

She was also lonely and sad. Somewhere in her history or her mind, there was a pull so strong that she was always a little bit apart from the rest of the world. She could never grab hold of that thing, 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 hopelessness.

It will be two years tomorrow since my mother officially died. But she was gone long before then...

I don't know when my mother was diagnosed with diabetes. Like so much of her history, her health was a tightly guarded secret and, like all things hidden, the mystery of it served her. For years, she alleged that she was dying of congestive heart failure. 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 breathing labored. She kept us all waiting in suspense, believing that any measure to help her would be undertaken in vain. The end was always just around the corner, because she was hopelessly dying.

That's me, in my father's arms.
But so are we all.

She sat in the living room, waiting for finality, for more than 15 years.

All that time, I had no idea that the actual source of her ailments was, simply, uncontrolled blood sugar. My mother had been obese her whole life over. She was often embarrassed and ashamed of her weight, like so many women. And, at times, she tried desperately to lose that weight....only to gain it back, and acquire a bit more shame along the journey. She gave up. She proclaimed that she would "rather eat well than be thin," and settled on a diet high in refined carbohydrates, fast food, processed food. She abandon the exercise bike in the kitchen, quit taking her afternoon walks, and slowed to an existence so sedentary that, one year, she stopped even walking up the stairs. Instead, the living room became the sum total of her world.

She checked her blood sugar sporadically at best, and administered insulin irregularly and infrequently until, one afternoon, I called to check on her. She'd been battling a harmless virus for weeks, and was sinking further into illness. That afternoon, she was barely lucid. I called my sister in a panic and, together, we tore the moulding from the doorways of my parents home as we wheeled her body to an ambulance. Moments later, her body in septic shock and her mind deluded, she became combative an irate. She punched and hit, kicked and shouted. My sister and I held her down as doctors inserted a picc line in to her unanesthetized neck as my father waited behind the curtain, hearing her scream.

I spent the next 30 days watching her liver and kidneys fail, holding her hands to keep the doctors from putting her in restraints, and waiting as she had waited all those years...

For her to die.

It turns out that every failed organ in her body had been the victim of uncontrolled diabetes. Her heart failure was due to Diabetic Cardiomyopathy. So, too, her chronic kidney disease. She could have, at any moment, chosen a different end...yet, it wasn't until those last days that she found a desire to live on. The tragedy of her life and death was perhaps that bit: That her will to survive, to get better, came only in the moments preceding her inevitable passing.

Checking my blood sugar
at 4:00am before heading
to the gym
My children remember her. They miss her. They ask about her...wonder if she remembers them. Her life here goes on, she just isn't available to see it.

When I speak about diabetes, I don't often tell the story of my mother. After all, those of us with diabetes hear her story all the time. Every time I disclose my diabetes diagnosis, I hear of the uncle who went blind or the grandfather who lost his toes, or the aunt in renal failure. Of course, that is part of the diabetes story...

But I'd rather tell the other side of the tale - the side marked by possibility, by good health, by limitless opportunity. I'd rather race my bike and eat good food and laugh with my kids. When I am asked if my mother would be proud of my advocacy from the seat of my bike, I answer an honest "no." She wouldn't understand it in the least. In fact, she bitterly babysat my children once while I was at a race, only to remind me that she "never did that sort of thing" when we were young.
But I also know that she was proud of me, the person I became and the mother I am to Henry and Midori. I know she loved me all too much, and I trust she knew that her love was multiplied and returned. There are people here who miss her deeply, who wish sadly for her, who think of her often. My mother's life and her death have made me more compassionate to the struggles of those with Type 2 diabetes, who try and try again, and who never quite make it work. We all have our failings. We all die in every moment.

 I also know that the story of her life and death has its place in the context of my own disease and my management of it. I promised my husband, as I watched her gasp for breath and pound her fists in the air, that I would never do that to our son and daughter. It's not really about fear or inspiration. It's about finding your way in the darkness of diagnosis, to a spot where you can live fully without the weight of disruption from disease. I wish, often, that we'd found that space together.

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