Three Letters: Vanessa, David, and Facebook

Dear Vanessa,

You don't know me at all. Maybe, at the beginning of the Scar Project, you saw my picture. Maybe, you stared into my eyes on the screen as I have stared into yours. Maybe, in the inhales in front of the camera, our breaths breathed the same recirculating air and our stories touched each for a moment.

I've watched you through David's lens. I've watched your strength turn to courage, your hope turn to defiance, your passion intenisfy as your cells careened out of control. I've watched your sisters blog about you and your last moments. Blog posts so infused with love that I could feel them holding you and you holding them.

You left us too soon. I never got to meet you in the flesh, I wish I had so that I could thank you enough for all that you have done.

Thank you for sharing your story with us. You embody hope. You show us that beating cancer isn't just about living longer, it's about living sincerely, and I thank you.

Thank you to your family. Their gift to me and others like me when they shared your story can never truly be repaid.

Good bye. You will so be missed.

Love and light, Amanda

Images used with gracious permission of 

David Jay at The Scar Project

Dear David,

I don't know if you remember me either. My shot didn't make the final cut, but you gave me something intangible.

Before the Scar Project, most of society couldn't look at us and see defiance and beauty. I don't think I did before I came to see you.  I think I bought into being maimed. I think I bought into being less than feminine for making a choice that I thought would save me.

Really,  your photos saved me. They made it so that I could be a person, a sister, and a woman, all feirceness and scars. When I sat for you, I wanted the daisies. They made me feel feminine. The photo you took reminded me that as a woman I am beyond what I think I am. It's like you reached into me and pulled me out from where I lay hidden.

When you posted it, each comment from each stranger, was a nail in the coffin of my self doubt and my fear of who I was to become. Even though, they were removed long ago, each electronic word is written deep inside me.

Thank you, much love and respect,

Amanda

Thank you.

Facebook:

I am tired of you CENSORING my sisters because they have nipples and I do not. I am tired of you blocking an art project that finds hope in defiance and beauty in scars.

You said you weren't going to do this anymore. You worded it though in a half truth way. Apparently mastectomy scars are OK, but god forbid, anyone should see a nipple.

I could handle it when you took down my photo, but taking down Vanessa's memorial was uncalled for. You took away the messages left in love for her family, and even though you put them back, you CAUSED distress that you cannot FIX.

Listen to us. LISTEN to me. Those pictures are the story of women like me: women diagnosed young and strong, battling an illness that no one can see, telling a story few know, and baring it all so that others like them DO NOT SUFFER IN SILENCE.

Please stop it, David, the rest of the scar girls, and the rest of the people these photos resonate with do not need this any more.


Respectfully,

Amanda

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."

Good byes

A late fall hike

I wouldn't have gotten my job without her. She was my student. My boss assigned me to her as she had an ABA background, and my boss felt I would be a better fit for me. If she hadn't been my student, I wouldn't be where I am at now, and I wouldn't have been at my amazing work during my last cancer.

Now, she is leaving. Her husband's taken a job on another coast where houses are as palatial as the summer's soaring temperatures. It was easier when we were leaving this place together. Now she gets on the plane, and I stay here. I've never been the friend who's been left behind. I've always been the one to do the leaving.

I'm so happy she is going. She can work with her degree there. If she chooses not to work, she can stay home with her kiddos. Mostly, I am happy for her.

Good byes are hard though. I feel like I've said them to her 5 million times since I found out she was leaving for sure. I can't really express how much I miss her and how grateful I am to her for who she is and how she lives.

She is one of my rocks; a co-survivor who walked my second cancer with me. Much as Rose and Sunshine's mom walked with me through my first journey, Rainbow's mom was there as I struggled this last time.  She arranged meals, took me to lunch, and kept me sane.

She taught me grace. She reawakened my thirst for faith, and she enlarged my heart to make room for tolerance. There's someone in her new place waiting for these lessons, and I wish them all the best.  They were hard. They painfully bent, twisted, and stretched me into someone I had forgotten I was.

S, fly where you are needed and know that you are perfectly suited to whatever task you face. I will miss you, but I'm glad you are going away.

A token