Under Our Skin Swim

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. 

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.

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 29^th 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 29^th 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.