This year my heart is deeply rooted in creativity.
I'm about to circle the sun
painting my heart out through each new season.
In 1998 I was diagnosed with an extremely rare,
fatal disease and flatly told to go home,
place my paper work in order and begin doing
"all the things I had ever dreamed of".
I had a child to raise, responsibilities,
a life to live.
Somewhere along that dark road
as I began to deteriorate
I remembered standing in the bedroom of
so many years ago when my life was still an
unfurling of all things possible.
I leaned over her bed and caught my reflection
in the giant mirror her father had hung above her;
opening an entire universe when
her broken body could only
navigate the contours of a bed.
He brought her paints, canvas, possibilities,
encouragement, and most importantly,
unleashed a lifetime of
passion and wonder.
Fast forward to my unraveling life.
I vowed I would learn to paint when I could no longer walk.
Something to look forward to when the vitality of a once healthy body
was confined to a wheel chair.
Somewhere along the long saga of specialists,
a growing history of profoundly depressing
windowless meeting grounds of "inborn errors"
I thought about the absence of what might serve
so many on this mysterious path;
hope, encouragement, beauty, color, the dance of light and shadow
in bold strokes of vitality and wonder.
This year I am dedicating myself
to creating a body of work
to hang in dreary hallways of infusion centers,
MDA clinics,windowless walls where people
wait seemingly alone,
so often for the most difficult news;
never wanting to lose sight of the impossible.
This year I am going to paint my heart out.
When 2015 comes to an end
I will gift a years body of work
to lift the hearts of others faced with the impossible.
yes. i. will.
Here's the inherent beauty of such a bold promise,
I do not plan to make this journey alone.
Through the visionary support of Genzyme
and their belief that people
who suffer the limitations of rare diseases
continue to carry important dreams and aspirations;
created a scholarship program;
to assist in manifesting their goals.
I am so grateful to have been chosen as one of
eight recipients this year.
I cannot begin to express my gratitude
in receiving this monumental gift of support.
One of the most difficult aspects
of a rare disease
is the isolation that grows
as ones physical abilities decline.
will go far in launching my year of painting,
so that together,
we will encourage, inspire and transcend limitations.
Together we will share a dream of
making a bright difference in the world around us.