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

Delayed

No snow!!! How can we snow shoe? How?

It's been a busy couple of weeks, and our busted laptop was moved away from my comfy blogging chair to the floor. I don't find this super conducive for writing my heart out, but alas, D's back won't allow him to fix the situation, and I can't move the stupid entertainment center to get at the plug. Amanda's blog, presented by dust bunnies, live from the guest room floor.

Yesterday, I parallel parked my new company's car. Yeah that's right, Amanda who would rather walk two miles into town than parallel park, parked that car between two giant trucks. Maybe it was just one giant truck and a fiat. Actually it was a prius and a fiat, but they were HUGE for their make and model...It's an omen.

In November, after receiving yet another denial letter from my insurance company about my machine, I sat defeated, hunched over my steering wheel, crying my eyes out. In my hand, I held a packet of papers one of my doctor's had graciously filled out for me to turn in. Across the top, the paper read, "Application for long term disability."

I couldn't drive. I couldn't walk. I couldn't type well. I couldn't hold a pen, tooth brush, comb, knitting needles, etc. I couldn't really do anything. I had ceded my power to the insurance company, and the remaining had been sucked away by a ridiculous finger infection. A lot will change in two months.

My machine came. With daily use, I am losing on average three pounds of fluid a day. I can walk. I have energy. I can hold a pencil. The disability paperwork is somewhere collecting dust.

Yesterday, I went to a resource fair for kids with disabilities transitioning to adulthood. As is often the case, someone commented on my sleeve.

Interested stranger: Burn garment?
Amanda: No, it's a compression sleeve

Interested stranger: Lyphedema?
Amanda: Why yes.

Interested stranger: I did that work and amputee work for twenty years.

What followed was a pleasant discussion of what has changed in the last few years since she left the field. She got it. She got what I was dealing with. She sympathized, and then she said something totally startling, "You and I both have disabilities, and no one would know it looking at us." She, M, has MS. I have total body swelling.

We have disabilities, we are not disabled by them. The distinction felt so crystal clear. It was like a weight lifted from me.

Today, I was discharged from OT for the first time in a year and a half. My pump is working so well, I don't have to go see my OT anymore except for tune ups. Now I just have to navigate the accommodations and the insurance. I see the end of it though. I see all I can accomplish.  The end is in sight.

Fish Lake in the SNOW!

Secrets

The day after Thanksgiving is our traditional Christmas tree day. We usually go up high in the mountains outside of where the firs and pines stretch out across the peaks. Like D says, Christmas trees grow on trees here. As we wind up the narrow logging and fire roads, one of us dodges rocks, branches, potholes, and the other looks for "the tree."

It may seem early for these sorts of things, but when I am working I really only get to see the tree on the weekends and in the evening. This year I have a full five weeks with the tree. I almost pushed it off. Tradition strong armed us out above the clouds. 

On a normally joy-filled day, in the back of my head, in my soul, I kept a secret though. It's a secret that's been building for weeks. I'm tired. I've been losing my balance. I've been having headaches. I've been craving sugar. I'm getting worried.

It's easy to pull off each symptom and think about it logically. I had a massive infection the entire month of October. I couldn't exercise, and my balance is a skill I have to hone: it's not an innate right. I've been stressed out, and I stress eat all sorts of things I shouldn't. I've been pushing myself hard to wrap up things at my old work so I've not been resting well, and I HAVEN'T been exercising.

The three week rule can't be used until I address the likely culprits. So I will be spending much of my vacation waking up without an alarm and moving my muscles. Three weeks starts today.

I can't talk to D right now about these things. Each symptom promises to overwhelm him with worry. My friends have typically had two responses, "It's nothing. You shouldn't think that way," or just simply, "three week rule."

The "three week rule" is what I need to hear. "It's nothing. You shouldn't THINK that way," is why I keep secrets. Cancer doesn't care what you think about it. Positivity doesn't affect survivorship. I held my good positive friend's hand as she died from stage IV cancer. She was afraid, unprepared, lonely, and desperate. She really "thought" she could beat it, and she spent so much time not thinking about death that it took her by surprise. 

I've always tried to walk the middle ground. Both options are possible, and I have to be OK with both outcomes. This isn't positive or negative thinking. It's just thinking. It's just looking at the pieces of the puzzle and seeing possibilities not certainties.

In non-cancer life, my husband and I were remodeling the bathroom. We had two options for the sink, a cheap one that looked like someone had updated an 80s plan for what a sink should be and a nice new one with clean modern lines. We really didn't have the money so the 80s-come-again sink made sense, but the one I loved was the one I loved. I told D to make the choice, because I didn't care which sink went in. Either decision was the correct one, but the correct one for a different reason.

I think about my cancers this way. They may kill me, they may not. My thinking about them has no control over the outcome. It's salt over my shoulder. I have to empty myself of those thoughts that nag and beg at me. They make me tired. Keeping secrets is hard. Both outcomes are the correct one, but they are correct for different reasons.

If you are interested in positivity and cancer, check out this article. For a thought provoking short video on the topic, check out this RSA animation.