May 1, 2016

2 Years after Diagnosis-5/08

This past weekend we spent three days in the Methow Valley. It is a place we have gone to the past three years as a family for Memorial Day. We have gone with friends and there have always been at least 2-4 other kids around.

Two years ago, before F was diagnosed with Dermatomyositis (JDM) but after almost a year of living with this progressive disease, she would not leave my side to play with others. She complained about walking up or down a hill, she was shaky in her body, in her approach to the world, and much of her behavior and moodiness was not understandable to me at the time. On that weekend, friends of ours who live in the Methow came to visit with their horses. F said she didn’t want to ride the horses. I told her she didn’t have to. When they arrived, she ran into our little trailer screaming and wouldn’t come out. I had to coax her out and hold her on my lap and even then she could only tolerate being in their presence for a few minutes.

Last year at this time, May 2007, she was 4 months into treatment and in a lot of pain. She was very withdrawn, barely able to walk. Sleeping and getting in and out of bed or to the outhouse was excruciating. It wasn’t much fun for her or any of us either.

A week before the Memorial Day holiday this year, F announced she wanted to try riding her old bike (the one without training wheels) and see if she could do it. We went to a basketball court near us to practice. She got a little of the balance worked out. Excited, she was very determined to keep going. A few days later some ponies and a horse came to a fair in our neighborhood park and she asked to ride the horse (not the pony). She got on it and rode in a small circle led by another young girl. She announced she was afraid while on the horse, and I remarked she had done it anyway.

This past weekend, back in the Methow, our friends with the horses showed up again. This time F got on the horse, was led down and around a road, riding more than in circles, and wanted to keep going. Then she asked if she could take riding lessons!

She ran up hills, went off to play on her own initiative with the other kids, went all over the place walking, running, laughing (even to the outhouse by herself).

The transformation is a marvel. It is amazing to realize how wise her body is. It was painful for us to see her becoming so timid and afraid at 4 ½ years old after having been strong and sturdy, to watch helplessly as she got weaker and weaker. Even after diagnosis we struggled as she withdrew far inside herself, perhaps to tolerate the pain and immobility and the effects of the drugs on her moods and spirit. She instinctively knew what to do to protect herself. Now, to see her running, laughing, initiating activities and her courage in doing things that scare her, I say her body/mind also knows what she can handle.

I have to believe that her body and mind worked together in both the disease process and the healing. Without one, her physical strength and health, she didn’t have much of the other, her joyous, courageous, Pushing Forward Into Life spirit either.

I can’t fully comprehend the intrinsic bond of mind/body/spirit, I just know from personal experience and again, watching my girl struggle and grow, they are always connected.

by Suzanne Edison, May 26, 2008



“Education of a Gardener” in The Seattle Times, July 11, 1999 and inHeronswood Catalogue, 2000 “Nonverbal Communication in the Classroom”, New Horizons for Learning, 1984