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"Our story is that, no matter the degree, we are fighting this together."
mother and daughter with the unique bond of a shared MS diagnosis.
Lucille, lovely in that feminine, Eastern European way, was
diagnosed about 13 years ago, and is now in a wheelchair. She has lost
the use of her right hand and on the day I visited, was a little more
aloof than her daughter. She is quiet, doting, and her adoration for her
grandsons is mutual. She is also patient; she has been waiting for stem
cell therapy for 8 years. The agony of waiting is unimaginable, and I am
furious thinking of how moneyed Conservative values will, as always,
fight to defer hope for so many people who could be helped.
met her daughter, Vanessa, through a mutual friend who remembers
Vanessa as an “artsy”, slightly rebellious high schooler. I don’t
necessarily see the punk haircut in this bubbly, positive mom
serving chicken nuggets to a 3-year-old. But she is definitely a
fighter. Opposite of Lucille, she experiences symptoms and weakness on
her left. She fights fatigue, uncertainty, fear. And, I am sure,
the frustration of suffering invisibly. People with Relapsing-Remitting
MS have the added burden of often “looking ok”- getting glances for
using handicapped parking spots, for bailing out of social events.
Sometimes, a wheelchair is easier because people know what to expect.
these parallels and differences that spoke to me in this shot. Mike is
an awesome kid- sharp, kind and and funny. Here, he’s engaged in
technology, games, possibilities. Vanessa engages, because she feels
good today and appreciates every second of it. Lucille is somewhat more
removed- I can’t quite read her expression. There is love, but there is
distance. Each has an inner life that a camera can’t quite catch, but
it’s neat when you catch those three lives together.