Aqua jogging

Last year, I wasn't entirely certain I had the strength to make it out of in the shape that I wanted to be in. Each denial letter from the insurance company eviscerated me.  I would sit at my desk in my old office in tears. I couldn't see a way forward. I, who always knows there're solutions, I, who always gets back up, stayed still and motionless trapped in a prison of pain and hopelessness.

Each denial letter reinforced this perception that my skills, my life, and my person-ness were not valued.  It didn't make sense. Every one who mattered said I need the machine. Without it, life stretched in front of me an endless struggle against a disability only a few trained people could see.

My mom's best friend, my aunt, once told me that I am an aqua jogger. "You get pulled under, and then you shoot right back up. You don't stay down long."  Last year, my lungs burned and my chest ached from being under the water too long.

I value resiliency. I value it in myself and in others. It is something that lets me say, "this isn't working. there has to be another way."

In November, I started meeting with some people about work. I remember sitting at lunch with one of them, and I remember saying, "I don't feel like this is a disability. I feel like it's a problem that needs solved."


Now, I see it as both. I haven't been able to pump for a week. I feel the heaviness creeping back. My hands won't hold pens easily, but it's different. I know it's temporary. I know, as soon as my cold is going, I can start pumping again, and the pressure and swelling will ease.

So it's a disability, but it's also something that can be supporting. Luckily, I've found an amazing place to work that seems to see it the same way.

The breathing rooms

So small and yet powerful :)

The machine made it. We've been trained on it, and I have been using it twice a day. The machine is smaller, slicker, and lighter than I expected. The suit that I wear is like Dr. Octo, a bear, and an old school scuba diver got together and had a love child. For an hour twice a day, it whirs and sucks air as if it were the cutest little ewok pretending to be Darth Vader. Oddly hypnotic and soothing, I stare at the ceiling or my eyelids connected to my prosthetic lymph system.

Selfie in suit

It reminds me of other rooms though. Hospital rooms sound like this when you are recovering from surgery, and they have you wired into leg pumps to prevent clots. Nursing homes sound like this when you are hanging out with people hoping to go home. C's room sounded like this the week before she died.

I had taken a job in Portland. My friend called to tell me that C wasn't doing well, and it was near. It was coming. D drove me south right after work on Friday. We drove through the fog, thick and hoary. The passes shot us up and out of it for brief moments. Within seconds, we'd sink back down into blank freezing fog.

The last pass home, we crested the peak. The moon hung bright, so close, I lifted my hand up to touch it, and behind it, around it , the stars spun a radiant dress. Clouds whirled dances above the valley floor. The brightness cast shadows on the ridges that stretched out beyond the valley to the coast. It was a perfect night: cold, clear, and calm.

The next day, I went to see C. Her window looked up the mountain, and the last fall leaves clung stubbornly to the stubby oaks. The room breathed. C's breath came in jagged gasps and whistles. Her hands were cold. Her lips pale purple: not blue, nor pink. Her shrunken frame looked out of place in the bed burdened by her fluid filled gut. Her "pregnancy" with cancer, as she called it, pressed on her lungs. Her fatness was what the doctor's called it when they misdiagnosed her. There was no insurance for the tests.

C, my writing buddy, my soul sister, my purple-shirted friend, always the optimist lay afraid in the breathing room, and I sat with her. I was 23. I knew little of death. I didn't know what to say. I just held her hand, listened to her words, and the oxygen machine whirred. She fell asleep. I kissed her one last time, and I left. C died that week. She was gone before I came back.

In my room, it's hard not to hear the soothing, hypnotic breath of the machine and think of all of those other rooms. This room is my sanctuary. It's the color of a winter run off, cool, green, blue and milky. The breath is breathing my lymph around, bringing relief to my heavy painful limbs and kindling hope that I might get a head of this condition. 

Maybe when I've been hooked up a while, the old memories will fade, and I will remember C just for her laugh, her poetry, and her image as God's jester dressed up for the feast. Right now, the machine reminds me of her at the end, her waiting to go, her being scared and, in an odd way, relieved. It's so strange, but instead of stress and fear, I feel nothing, but a sad and quiet peace. It's a good place to spend a while each day, alone, peaceful, and waiting.

This last Sunday, D drove us back from a quick visit to Portland. The fog hung thick, almost an eerie pale green.  As we wound up the mountain highway, the road punched us through the fog. Ahead, just above the next peak, framed by billowy brilliant night clouds, a single shooting star slipped from space. I fancy it was C saying, "Merry Christmas. Happy Belated Hanukkah. Happy Kwanzaa. Joyful Solstice. Happy New Year. God loves my laugh. Hugs and kisses."