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Archive for the ‘Stealing words’ Category

Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

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Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

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Once you choose hope, anything’s possible. -Christopher Reeve

Four months ago I got my muscle biopsy results. It showed severe deficiencies and came with the official diagnosis of Mitochondrial Disease. Although I had lived over a year with a “clinical diagnosis,” it had suddenly become real. Really real. I found myself at a crossroad: I could breakdown and cry; or, I could do something about it.

That night I spoke with my best friend and expressed how I felt. Less than a year earlier, she had had the same conversation with her physicians. She heard those same words: “You have mitochondrial disease.” She felt the reality come over herself. And she chose to fight back.

We spoke for a long time about what we could do. How we could change the future. How we could keep this horrible disease from consuming our every wish and dream. Our every hope.

It was on that night that the Show of Hope was first conceived.

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Author’s note: This is a journal entry I wrote the day after my 26th birthday. While much has changed since then, the core of this entry has not. Therefore, I decided to share it again, the day after my 27th birthday, because it still rings true.

Of all the people that I admire – and there are many – three repeatedly come to mind:
1. Gandhi, because he said, “be the change you wish to see in the world”;
2. Ang, our angel, who lived that change for each of her 22 years;
and
3. My mother, because she reminded me of the belief I shared with Ang and Gandhi.

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