And this really hurts

"The postings on this site are my own and do not necessarily represent the views of the

American Cancer Society”

A week before she died, I held Carol’s hand. I’ve written about her death before,

but today I’m thinking of her. My heart is in that room. My hand in her hand. It’s dry and cold and blue. Her breathing is harsh and labored, and her wish for me that I live is so clear in each minute we share.

I’m with her today because, in 2004, she went to a rural hospital in Southern Oregon with a distended belly and pain, and she was turned away after a cursory exam. She was told that they couldn’t cure fatness.

Because she didn’t have health insurance, she had no way to get a second opinion. The hospital was not allowed to run tests, and a year later, almost dead, they had to treat her. (This is your safety net people.) A year after that I held her hand, and a week later, she died.

CAROL DIED BECAUSE SHE COULDN’T AFFORD HEALTH INSURANCE. SHE DIED BECAUSE SHE HAD A PRE-EXISTING CONDITION.

To all our lawmakers who voted today, who removed health care from 24 million Americans, who shoved me back into a high-risk pool should I ever lose my job, who destroyed basic medical services, I hope you never have to hold your loved one’s hands as they die and know that if they had been born richer or had a different life, they would have lived at least a little while longer.

So the new act is going to the senate, and it won’t pass there, but these lawmakers must be held accountable. Please call, write, protest, shout, scream, resist. This is our country, and they work for us. Do it for me, and most of all, please do it for Carol.

Peace and love,

Amanda

Not my ribbon continued.

My husband’s brain is eating itself. It’s slowly chipping away at the insulation keeping his neurons functioning sweetly and his brain humming. Most days, it is, a side from a memory lapse or four and his hours long naps, it’s easy to forget. But then, there are days like today.

I’m not home. Hank and I are off teaching each other how to train humans and dogs. Each skill we master feeds us.

Honey is there, and Bubbles and Squeak are whistling in their cage, as they undoubtedly dig into a glorious green salad. I am here. He’s there.

Yesterday, his vision greyed out. Today, it is still grey. The on-call neurologist thinks it’s likely some sort of brain issue not an eye issue. Steroids won’t help.

It’s another nail in the coffin of who Dan was. No more dreams of flying, maybe no more driving, maybe no more woodworking or tinkering. How does one even go about facing that type of loss. How does one go on when everything you are is stripped down and you are laid bare?

My cancers were different. I either made it, or after a period of increasing disability, I didn’t. My husband’s disorder is like a daily death...slowly, inexplicably, and inexorably, he becomes someone we don’t recognize.

How do you move on? How do I even help? All I can say is, “I’m sorry.” “We’ll get through this.” Cold comfort. I can’t give him back his dreams of flying. From here, I can’t even help him find new dreams.

It’s like we live at the bottom of a well. The rope that lowers the pail just broke. Trapped, we wait. We'll think of something, right?

Another Ribbon Confirmed, self empathy, and new beginnings.

It's been ten years since my first diagnosis. Well, 10 years and three months. Between here and there, the time is endless. My siblings put together a crazy plan to take D and me on a ten day trip somewhere. This has meant tracking down passports, arranging doggy baby sitting, and planning a once in the life time trip. As part of it, they asked me to find pictures of us. 

This is a normal request. Like most couples, we have an endless number of selfies and couple photos. You know the ones. D and me kissing on a bridge. D and me hugging on a beach. D and me and the dogs packing for an adventure. 

I dutifully went back ten years...pulling up pictures of an old me and an old him living our old lives. Me bald. Me fat. Me thin. Me with long hair. Me with short hair. Me bald. D not changing. His arms wrapped around me. His eyes soft and sweet. His laugh frozen on his lips. 

And then they stop. 

5 years ago, it's like someone came through with an exacto knife and sliced him out of my outward life. That is when this started. This being the start of the end of life as we knew it then. Multiple Sclerosis silently stole in through our window and silently snuck back out with my husband's, my best friend's, my love's energy and vitality. 

He sleeps most of the time now. We're working with doctors. We're going to support groups. It's summer. We can start building back up what we have lost and given up. Back home in Austin, our family and friends lift us up and shelter us without asking. He can't work, but gratefully, his disability kicks in this month. It's not a lot...but it definitely helps. 

There's this great video where Brene Brown talks about Empthy. I may have posted it before. It's beautifully illustrated with a bear, a cat/fox thing, and a goat. Anyway, in it. she talks about how empathetic statements rarely begin with "at least." 

She says empathy is a matter of meeting someone where they are at, being vulnerable with them, and sharing that emotional experience with them. This video changed my life in my relationship with others. 

Today, in a fit of rage and fear spilling out of me, in my head I said, "At least, he isn't dead. There are people who are dead you know." 

It stopped my mental storm cold. How can I be empathetic with others. if I can't be empathetic with myself. So I got into my head, and I turned into that giant bear, and I swept my little fox/cat/coyote self into my arms, and I said, "thank you for sharing with me, self. This is really hard."  

It didn't matter if the storm lifted. It didn't matter whether or not blue skies were up ahead. Even by myself, I am not alone. This is really hard, and there are lots of people surrounding us to make it a little better by just being here with us. 

PS D and I had the great fortune to be able to move home to Texas. I've been looking for work and found a job at the American Cancer Society. Per ACS social media policy, you will now see "The postings on this site are my own and do not necessarily represent the views of the

American Cancer Society” around my blog.

Another ribbon...

We're sitting in another doctor's exam room. Wan fluorescent lights flicker. My pulse quickens as I hear familiar words. Neuropathy, loss of balance, not cancer, fatigue, not cancer.

My hand cannot reach for his. I'm rooted to the chair...a chasm opening between me and the exam table. The neurologist takes D's history, and I am left, my breath screaming in my lungs and my pulse ramming in my veins.

It's weird being on the other side of things. It's weird to feel the helplessness. When it was me, when I was the one on the table, it was somehow both easier and harder. I took some comfort knowing even if I didn't make it, he would.

MRIs, spinal taps, 12 vials of blood, and the endless waiting. All of it so familiar and unfamiliar. The doctors' offices, the bills, the missed work. We are haunted by what we cannot name.

I get home from work, and our house feels empty. Our dogs quietly lick my fingers. The only thing I hear is the rhythmic sound of his breath whispering in a dark room.  How many times has it been my breath he listened to?

It's hard not to be angry right now. The "what a couple" jokes made privately sound hollow and pained from other mouths. I'm not mad at him. I'm mad at life.

So we wait, breath by breath. We wait, hoping/hating the answer that will likely come, to add another ribbon to our collection. What a pair we make. 

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

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.

"I need help."

Thank you. Robot Hugs! Best advice ever.

Terror. My heart sunk into my shoes, my palms dripped anxiety, as my lungs stilled.  "I need to go to the hospital. I need you to take me. I am so sorry. I am so sorry." D's voice cracked and quaked. I grabbed my purse, my keys, shut my office door. "We got this baby. Together, we've got this."

My knees shook. I got D in the car. We raced to the emergency room. Back and forth, we talked and cried. "I am so sorry." "We've got this baby." "I am so sorry." "We've got this."  "I am so sorry." "This is the bottom, darling. This is the bottom." Once there, his breath eased, his body melted, and he relaxed. What he had been carrying on his shoulders alone became the burden of many.

We waited. The crisis worker interviewed us separately to ensure D didn't have an abusive wife at worst or at best, a wife who was the problem.  In that little room, when she asked me what I did, my eyes broke open and water streamed down my face. I smiled, "I'm a crisis worker."

I feel like she held my hand. I am certain she didn't. I probably looked like a psychological porcupine at a cross roads. "I'm surprised you're not in the room next to D, here for treatment." I chuckled. "It's my turn."  She smiled, "Just don't shovel your emotions and be strong for the sake of strength. It will hurt not to move." "D's wellness cannot be sacrificed for mine. There's always solutions."

In with D, talking with the crisis worker and the doctor, D, shuddered, "I know you need to go home and be with Duck, and I'm so sorry you can't. I am a horrible person." "We're staying here," I said evenly, clarity making everything hyper-focused and brilliant.  "There's no move." As I said it, I looked at the crisis worker. Our gazes met, and I did everything I could to tell her, "It's alright. I've got this."

In another room, a year before, when I talked to my sweet doctor, I told her D was having a hard time. She wondered why. She wondered how I could do better than he did. After all, I went through it, and he didn't. "I get it. If I die, I die, and I'm gone. If I die, he's here, and I'm not. I get it." She looked at me, "I've never thought about it that way." 

He has always been the strong one. The one who held me wracked in sobs at 2:00 am. the one who watched me bite my lip until bled to block out blinding pain of chemo side effects. The one who cleaned up Jackson Pollock vomit off the bathroom floor.

D and I've thought long and hard about telling this side of our story. We decided it needed to be told together. Mental health has lived in the shadows for too long.

D ended up diagnosed with PTSD from my cancer. Even though I sat in the chair, D lived through it with me. Each prick, each nausea wave, each incision, each waiting, he was there. D is a co-survivor of my trauma, and he, himself, is traumatized.

A reminder from a good friend.

His mental health crisis was as real as my cancer. He had no option to "just be happy" or "just buck up." He could only bend and ask for help.  The wicked thing about depression and other crises in the mind is that the last person to know it's a problem  is often the one who is suffering the most. They can't be cut out, they can't be irradiated, and they can't be poisoned, but they can be treated.

Mental health isn't a person's choice. It just is what it is, and there's good ways to treat it. D and I are both working through this together.

If you are struggling, your spouse, friends, and family are struggling with depression, PTSD, or another mental health issue, please don't feel alone. Mental health concerns are not a choice. Your choice is to recognize that you need help and do whatever you can to get it. It's not about being strong or not. It's about being wise enough to know you need someone's help.

At the bottom, we called D's brother, and he flew out and helped us both get on our meds. It was the best call I've ever made, and it was the best gift we've ever been given.