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.