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| Open Eye Pictures, Under Our Skin |
Just over two years ago now, I joined a water aerobics class
to strengthen my creaky, arthritic body, and found Easter Seals Camp
Stand-By-Me, just ten minutes from our Aerie on Joe’s Bay. Down a winding, steep driveway, the camp
sits like an oasis in Vaughn, right on the bay. I’ll never forget the first time I went into this pool, I cried
as gravity gave way to therapeutic water, my element since before I was
born! Gently held, I could move once
again, do the exercises that were impossible on the floor, with my stegosaurus
spine. Yes, I feel sore and tired
after, but in that deep end, I am an otter at play…albeit a slower, grunting
one!
It’s a small pool, with deep and shallow side-by-side. You can see trees through glass sliding
doors on each side and, when the sun is out, golden light spills in patches on
the water, pathways of sunlight connected, like the Collective Unconscious,
like All My Relations, and faith gathering, through small, undulating
waves. Holding the skylights and giving
us shelter, a cedar roof and rafters weaving their own patterns above.
The water is where I’ve always come, to ask for help or
communication, to be mindful of each breath in and each breath out. As the Buddha says, we are but hinges for
breath. Swimming is a moving
meditation, a please on inhale, a thank you on exhale. It was in the pool I used to ask for help in
finding a doctor for my daughter, one who would understand new research on Lyme
disease. This May, it will be six years
since we found that doctor, receiving his phone call after I came home from
swimming my regular mile of please and thank you, at a gym in Tacoma.
When the multi-award-winning documentary on Lyme (and its
politics) “Under Our Skin” came out, there was Mandy on the cover, in her pool.
Two of our favourite Lymefighters, Leslie Wermers and Tracie Schissel
re-created this shot, together, on their website. Leslie will forever be known as the woman who predicted her own
death from Lyme, in this film, while the head of the panel to make Lyme
Guidelines (from the Infectious Disease Society of America) is still calling
chronic Lyme patients “Lyme-Nuts,” and making money on that stance. Les often comes to me, while I swim, and I
think of Mandy, who swims again, though she is also back in treatment. Tracie, Les’ sister, still struggles with Lyme, still advocates as much as she can for others.
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| Poster by Dale Goodvin |
We received our second proclamation from the Governor’s
Office, this year, naming May officially Lyme-Awareness Month in Washington, as
in so many other states. We thank Rep.
Larry Seaquist and Assistant Terra Rose, for their help in expediting. In May, nymph ticks can be as small as a
poppy-seed…still as dangerous, still as much bacterial and viral infections as
their larger parents. Those who have
read my blogs know I try to do something each year, to raise awareness about
ticks carrying Lyme and co-infections, about them traveling all the feathered
airlines, everywhere. Google images of
ticks on birds…but not before bedtime!
My family tries to educate others, not wanting them to have to take the
long and hard journey my daughter has…that we, as a family walk together, now
in Anna’s fourteenth year of Lyme and co-infections. She was in hospital with multiple blood clots in both lungs, in
February, and will be getting a central line put in her chest next week. To say Anna is a champion, doesn’t say
enough.
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| Daruma (fall 7 times, rise 8) by Mizu Sugimura. |
With the help and blessing of Easter Seals, Washington, and
Camp Stand-By-Me, this year my family kicks off May as Lyme-Awareness Month by
swimming for two solid hours in the camp’s pool, Sunday, April 29th
from 2-4pm. My husband Matt, my son
Aaron, and myself pledge in the name of hundreds of chronic Lyme patients in
this state, to do our very first, small, “Under Our Skin Swim,” while
supporters hand out educational Lyme literature, a wonderful state resources
booklet (good for anyone dealing with any chronic illness) pamphlets from one
of the very few labs in this country to specialize in Lyme (testing for Lyme at
most labs produces a possible 75% false-negative rate) a free and easy
education…that could save your life!
Copies of the DVD “Under Our Skin” will be the only item available for
sale, all proceeds going to Open Eye Pictures Lyme-Awareness Outreach, with
thanks for their permission to use the name, and for their gracious support,
personalized by Regan Brashear. Of course, the Daruma Mizu made for Lyme (fall down seven times, rise eight, is the daruma saying) will be on display, a beautiful cheerleader, thank you Mizu!
Please come to Camp Stand-By-Me on April 29th to
meet my family and cheer us on, if only for a few minutes. Take some time to look around the camp, just
cleaned and given some loving by 250 terrific volunteers. You can meet Joshua Mayer, the new Camp
Director putting his heart and elbow grease into this camp. In May, the campers come…kids who would not
have this wonderful experience, without Easter Seals. If you’re thinking of a charitable donation, remember them,
please. I thank Cathy Bisaillon, Head
of Easter Seals for Washington State, for their generosity, and interest in
keeping their campers as safe as can be. Last, but not least, I thank Maxine Halley, for donating her time as lifeguard for this event.
I’m not saying I’ll be able to end two hours gracefully, and
with no grunting, but you can be sure of this: I will make those two hours, for
my daughter, and for others I love as my own.
They will be sending in their own way of standing and being counted in
this state. That, I’ll keep secret for
you to come down and find. This is only
the beginning of “Under Our Skin Swims” started, with love and dedication to
Anna, in memory of our dear Les, and in the names of all those who suffer. With each inhale, the word please, each
exhale, I thank you.
