Thursday, January 25, 2007

Annie's Leg

A human leg weighs, on average, about eight or nine pounds according to Annie’s doctors. Watching my sister lose hers in a battle with a tumor, I’ve believe it weighs more, and perhaps less, than they'd have us believe.

A Desmoid tumor is a non-malignant growth that continues to slowly grow, usually starting as a small nugget lodged in the muscle and swelling until it consumes everything around it, eating away at ligaments, joints, fat and bone. As it pushes everything else out of the way, it trudges onward, eternally growing and insidious. To be clear, it is not a cancer - but it is a serious medical condition. After six years of largely useless treatments, the tumor had won, growing, and threatened her life, demanding action.

Five sleepless nights in a hospital’s surgical recovery wing can make anyone a little loopy, a little long on contemplation and short on reason. An epidural drip and oxycontin only made my sister more so; but she bore the weight of the surgery and impending recovery as angelic and stoically as I thought possible.

I, on the other hand, was a mess. I was doing my best, and failing, at standing in for absent family members – my recently deceased father being one of them. He would’ve known what to say, I kept telling myself; he would’ve made things right.

Job insecurity and a deep questioning of my life’s recent choices didn’t help; namely to take time off from the job hunt to try and figure out the answers to big questions I weren’t sure had them. Maybe I was just being lazy, or my talents had exhausted themselves, and there truly was no sunny side of the rainbow in my future. After six months of odd jobs and scraping by, I was wearing down, losing focus.

And here was my younger sister, 23, engaged, beautiful, dealing with a crisis that loomed larger than any potential financial setback or windfall ever could. How selfish and small-minded I’d been those many months! How incredibly wrong of me!

And so we were there when she came to, were there as she discussed how it felt and tried on her new prosthesis. There had been a going away party, and now there would be a new leg party, and the enormity of what she was dealing with – life as an amputee – brought home all of those images of wounded soldiers struggling to walk, of children in Liberia and Sierra Leone who, limbless, struggled on in the world, of cruel Janjaweed militiamen attacking poor peasants and forcing them into a lifetime of struggle against the simplicity of walking upright or eating with their hands.

Life, as we knew it, was over, and a new chapter was beginning. The reality of, the enormity of, the situation presented itself.

Suddenly so much of what is going on in the world has been brought into sharp relief: this small tragedy drove home how easily we able-bodied, moneyed, successful busy people ignore so much pain and suffering in the world in exchange for good nights’ sleep and a ticket to easy living. Suddenly the feel-good reports of progress in the world, of micro loans and the wonders of science treating and curing new diseases every day were brought into cruel contrast with the often-ignored reports of wars, genocide, disease and death.

These problems are with us, as surely as Annie’s leg is not, and will never go away. Pestilence has a knack for staying power, and there are no easy answers. But if my sister has the courage to deal with her loss as strongly as she has, then we should all force ourselves to face the daily pain of others with the compassion and gritty determination those problems are due. Those of us blessed as we are should find space in our hearts for those of us who aren’t.

As for Annie, she hasn’t just lost a leg. In many ways, she’s lost an independence, youth and innocence she will struggle to regain. But she is, I suspect, gaining an incredible sense of self-respect, emotional maturity and understanding about the world. She is gaining the sanguinity few people I’ve ever known possess – and at such a young age.

Maybe it’s wrong to say – as if to lessen the weight of the tragedy – that anything good came, or will come, from this. But perhaps that is how we best deal with major loss. Silver linings need to exist, or these tragedies would remain unbearable.

The goal is to walk, of her own volition, down the aisle next fall to stand next to her fiancé and take her vows. There is no doubt in my or anyone’s mind that she has the courage and perseverance to achieve that modest – and at the same time lofty – goal.

If my father were here, he would say this better, but he’s not, so I’m forced to try. That simple act of walking twenty-odd feet won’t change the world or solve anyone’s problems or cure other diseases or even feel ultimately be a success of any import.

But it will feel like a triumph, in the face of this lost battle with disease.

She will walk again. That’s enough.


Nicole said...

Oh, Jon...
I don't know what to say. This is beautiful And sad. How strong your wonderful sister is. I know you must just ache for her.
She'll walk down that aisle. Don't you worry - she'll do it. Steady and with great purpose.
Lots of love to you, my friend.

Anonymous said...

Jon, after reading this... I believe you certainly had all the right things to say for your sister and your family and who wouldnt be proud of you for that. Be strong for yourself so you can be there for your sister. She is truly remarkable to have gone through what she has and maintain her hope. I wish her the best for hew new life ahead with her fiance. And my thoughts are with your family even though my words seem to be at a loss.
Love, Nadia.