(reprinted with permission by Tidewater Press)
A few times a year I start to feel the walls closing in. The house seems smaller and I realize that it’s probably getting too cluttered in here. Although I watched Marie Kondo’s program on decluttering religiously and even bought the book, the habits did not completely form and after a year of collecting old clothes and odds and ends and donating them to Goodwill each month, I’m afraid I fell off the “tidy” wagon.
Our house isn’t exactly messy though. Rather it just begins to feel close when stuff starts to pile up—books, dog toys and even plants, especially because lately I’ve been on a succulent binge and my entire desk has been taken over by all the lovely shapes and colors. But, with three small, very active dogs and my husband Charlie in the house, it can feel a bit like a whirlwind of activity in here. Sometimes I know that it’s also my mind that needs to calm and declutter too, and tidying the house will help with that, so last Saturday I flicked on the TV to watch Marie’s happy little frame and rewatched my favorite episode, the one with the vet, and then felt refreshed and ready to revisit my clutter.
My purge lasted until exactly noon on Sunday and then came to a full stop when I came across the plastic bin of our old photos stored under the bed. I never know what to do with photos now, scan them and have them printed into a book? We have so many that they would fill countless albums. I guess our parents had the same problems when slides came out and everybody had a slide projector. Of course, they didn’t do anything with them, we had a slide night exactly twice in my life when I was small, and then, the same as Charlie’s folks, the slides and the old, (usually) broken pro- jectors were handed down to us (where incidentally, they sit side by side in the back closet because we don’t know what to do with them either). We’ve tried to look at the slides themselves, without the projectors, on bright days, but the ensuing headaches aren’t worth it.
So on Sunday we sat going through photos. I lasted a bit longer than Charlie because he hates doing tedious stuff like this, not that he doesn’t like helping, but because it’s hard for him to stay doing anything for too long—it’s hard on his body. Which is fine, I don’t really mind because I was able to linger over our wedding album and recall the day and the days afterward and then I found my favorite photo of all.
The thing I love about this picture of Charlie is how still and serene he is, with his flash of smiling eyes and his mouth open just enough to make his dimples even deeper. We were on our honeymoon in Bali and ran out of film, and a nice Greek couple lent us their camera for a few photos. I took this shot of Charlie beside an elephant, but we laugh because I didn’t even manage to get all the elephant in the shot. We offered to pay for the film, but kind couple shook their heads no, and when they found out we had just been married the gentleman unclipped a keychain off his backpack, a metal one with the Greek flag on it and handed it to us with a smile. (We love when strangers come together in travel; it’s like we’re all instant friends and it gives us hope for humanity.) Those people were so kind, and that day was so amazing, and I loved Charlie so much already back then, I never knew time would increase that by leaps and bounds year after year.
Although the Polaroid is small, it is made big in my hands because of my huge respect for my husband. And I love it because he is so still, whereas in reality, sometimes looking at the live Charlie in front of me hurts my eyes and makes a small earthquake in my brain. In fact, sometimes I have to look away when we’re talking, and I know how painful that is for me to do, so I can imagine how painful it is for Charlie, to see me doing it.
He wasn’t always like this; decades ago when we first met, he had just the odd movement he couldn’t control. His toes curling in, his leg twisting for no reason and, oh, he would get writer’s cramp, really badly, so he couldn’t open his hand after scribbling a few words with a pencil.
Sometimes if he was stressed or tired, or maybe too hot, his neck would get a bit jumpy and his head looked like it was shaking. These days it happens almost all the time, except when he is lying down, and he lies down a lot, so we can talk and so he can just have a break. His muscles get sore and tired from firing and fighting against each other all the time. I can’t imagine his pain and frustration. Sometimes his head actually gets stuck looking to the left and he jokes that he’s “leaning a little left” on those days. Sometimes the Botox treatments work to relax his muscles, but sometimes not. We’ve tried the DBS (Deep Brain Stimulation) with some result, but nothing lasts too long. But we’re hopeful, the more of his special exercises he does, the better he is, we know he’s rewiring his brain, so we keep up a pretty good regime, and dysto- nia isn’t life threatening so we’re happy and grateful.
And Charlie’s a gentleman, does everything he can manage, and when he’s lying down, he’s just my old Charlie, cracking jokes and talking about life. We talk a lot about life, his viewpoint is so unique, and when we talk, I see the world differently. He’s my hero. His continuous movement has pushed him beyond his body, and instead of being sullen or angry, it is like he has transcended. He talks about ideas and philosophizes and creates solutions for bigger problems. He has moved outside of himself.
At night I put splints on his legs and his wrists so his body doesn’t get pulled out of shape while he sleeps. For some people like Charlie, the muscles contracting can pull the joints out of alignment, and since we would like to avoid surgery if we can, we splint and we yoga. Charlie is an amazing Yogi. Even though he can’t physically do a lot of the positions, he tells me that his yoga is a mindful state, not a physical state, and I can feel the calmness around him. That’s why sometimes it’s hard to see him in such rapid movement, tremoring and spasming, sharp sudden jarring movements or slow repetitive ones. It’s against his nature.
At first, doctors diagnosed him with multiple sclerosis, but after many clinic visits, tests and long lines of doctors, we just stopped and stood and then finally stepped outside the whirlwind of the medical system. We were done, and then by fluke, after Charlie had fallen down a couple of times, tripping over his own foot, we were sent to a new neurologist. We had already given up at this point and were serenely living our best life, Charlie’s best life, and we were content. Well, as content as you can be with your neck stuck in one direction and the rest of your body in spasm. Our new doctor undiagnosed MS and gave him a new diagnosis of dystonia. She also gave us all kinds of hope and now we look forward to a day when his body might be tranquil, and move under his own direction, instead of Charlie having to work around his brain’s odd decisions.
I show him the old Polaroid picture when he’s lying down and he can see it clearly then too, because his head is propped up on pillows and he’s not moving as much, and we both love it for the same reason: the look on his face is happy and restful and there is an elephant, but we don’t always see it, and in the photo, Charlie is still.
“Still” is a story in People Like Frank and other stories from the edge of normal
by Jenn Ashton, Tidewater Press, 2020
A writer from the age of six, Jenn Ashton was first published when she was fourteen. She has written fiction, non-fiction and children’s books as well as editorials and articles for periodicals and journals. She sits on the boards of the Federation of BC Writers and Indigenous Writer’s Collective and was recently recognized by the BC Historical Federation for excellence in non-fiction writing. Jenn is a graduate of Simon Fraser University’s Writer’s Studio where she now works as a teaching assistant. She lives in North Vancouver.