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The One Thing That Helped Me When I Didn’t Have a Name for My Illness

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I am 4 years old. I am swimming in the ocean at a family reunion, and everything is beautiful and blue. I have just learned to swim and I feel triumphant — until a rip tide comes in and holds me to the sand with intense force. I am too small to reach to the sky above me. I am already underweight by then, and there simply isn’t enough of me to fight the tide. I am rescued by a kind, distant relative who happens to notice me. It is the first time I recognize my own mortality. I am terrified.

I am 5 years old, playing in the woods by my house. I am wild and free, and covered in dirt. I am completely in awe, and I don’t ever want to leave. The next week, I will be hospitalized because I am dangerously sick. I will be measured and poked and prodded. A big woman will make me pee in a cup. I will cry once, but then I will accept that apparently, this is what I do now.

I am 12 years old. My sixth grade class is doing trail restoration. I revel in the sunshine and the sweat and the break from classrooms. The anxiety disorder that often dominates my days at that age doesn’t take hold that day, and everything seems balanced in my world.

The next day, I develop a rash that turns into such a severe case of poison oak, I am put on intense steroids and miss the next week of school. I do not enjoy the break from the classroom that time.

My parents sigh. They always knew my body was sensitive.

I am taken to the doctor where I demand to know if I will still be allowed to go hiking. The doctor begrudgingly says yes, but I have to stick to wide trails. Wide trails are full of people and noise. I sob at home in my little blue room, because I need deep wilderness as much as I need those medications.

 I am 14 years old. I have a Facebook account for the first time. I utilize it mostly to complain that I am stuck home in bed. At the time, we think this is just because I have a weak immune system and keep catching the flu. We are wrong.

I am 16. I apply for an internship at the Marin Headlands, a wilderness area near my home, where I would teach children about science and green spaces and national parks. I am accepted. I love my job  and I am proud of it. One day as I guide a group of children through a game about the water system, I trip and my ankle gives out. I cannot get up again and have to be half-carried to a car that delivers me home.  I attend physical therapy for months. We add “weak ligaments” to my growing laundry list of problems.

I start displaying other, stranger symptoms; no one knows why. My body erupts in red flushes and I shake violently, even with the heat on. I am not angry or sad anymore, just numb with fear and fever. They talk about Lyme disease and cancer in hushed voices. It is neither. I wish for a diagnosis as hard as I wish for my first kiss. I get the second, not the first.

I am 17. It is my senior year of high school. This year is going to go right for me, I have decided. I have willed the end to the endless blood tests and confused doctors. I will get better, by sheer determination alone — if the doctors cannot help me,  I will help myself. I don’t, yet. I pray fervently. I miss about half my senior year. Kids at school think I’m cutting class. I read the books from my bed and dream of the forest.

I am 18. I have been diagnosed with mast cell activation disorder. No one has heard of it, and I do not fully understand it. But at least it is a diagnosis, and with it comes medication.  It is a beginning. I am starting college, and my university runs an outdoor immersion program I am excited about. My disease flares, and I cannot go backpacking. But I go on an overnight canoe trip instead, and I realize all over again how powerful a hold the natural world has on me. I watch seals play and see a bald eagle. I feel reborn in the Northwest.

I am 20. This time I am leading the outdoor immersion program, and for the first time I will lead a backpacking trip in the wilderness. I am scared and excited. I plan every detail. The day before we are set to leave, I have a flare of symptoms and my blood pressure shoots to 140/90. I am sent home in an inky night, holding back my sadness until I have time to let it wash across me.

At home, I lay in my bed, weeping, aching for the trees, for my co-lead, for the experience of sharing the wilderness with others.

I sleep in my housemate’s bed because I do not want to be alone.

I am still 20, and I am fighting.  

It is two weeks later. I am better, for now. Inevitably, the bad days will come back, but right now, it is the middle of September, and summer is still lingering. My friend asks if I want to go backpacking with him, maybe take the trail I missed. I pack my clothes and bowl and sunscreen, and I escape.

I realize for the hundredth time, no matter how many days I spend in my bed, I will keep rising.

I will get up again, and I will hit the trails, hit the water, climb the trees and lounge on the sand. I will build a lifetime of memories of dirt and rain and sleeping under the stars. I will thank my body for the good days, and turn my face to the sun.

Originally published: September 20, 2016
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