by Jane Miller
I finally slept, last night. Wrapped in Erik’s arms. The first time in four nights that I’ve slept like that. Deep, comforting, relaxing, sleep.
I haven’t slept in years. That’s not a hyperbole. I’ve slept no more than three hours at a time since the ‘90s. There are some people, from what I’m given to understand, who fall asleep and stay asleep until they wake up some required amount of time later. There are some people, from what they tell me, who actually sleep for eight hours a night. And wake up refreshed.
Honestly, they say “refreshed.” I don’t even know what that word means anymore. Half the time I feel like a top, wobbling as it runs out of spin.
We walked miles today, all around Victoria. From the boat up into downtown to catch the bus to Trotac, our favorite store in the city. It’s a marine supply store where we’re on a first-name basis with everyone.
To the metal fabricator who has forgotten for the second time that he owes us a metal plate to go behind the fireplace heater we’ve been running for months now. To another bus to take us back uptown to our mailbox.
Then to one of our favorite bakeries, to the grocery store, to Chinatown for the best potstickers in the world, to MEC (an outdoor store), then back to the boat. Just writing it down is tiring.
“There’s something wrong,” Erik says, looking at me and tilting his head slightly to the right.
“No,” I say, tilting my head back at him, squinting my eyes slightly as if to up the ante.
“Yes,” he says. “You’re on edge, something’s wrong.”
“I’m just tired,” I say. “And maybe have a headache. And I should take an Allegra-D,” I say through the cough that has lasted since January 30. All that coughing tires me out, too.
I have two conditions that affect my central nervous system. Fibromyalgia, a “central sensitization syndrome,” which causes me to feel pain where and when others don’t. It also causes fatigue that affects normal daily living.
And Parkinson’s Disease, a “progressive degenerative neurological” disorder, which causes all sorts of hideous physical and mental symptoms … and fatigue, caused by sleep problems that can start years before the movement symptoms begin and the disease is diagnosed.
Batting a thousand in the Cool-Diseases-To-Have Department.
I wish I could sleep. Let my brain rest. It’s not as if I’m solving the world’s problems. Or doing something, anything productive. I’m just awake. I sit on the couch in the salon, (the boat’s living room) and my body slumps forward into a “C,” I’m so tired. I feel myself tipping over to my right, ever so slowly, like a top as it runs out of spin.
Sometimes I’m afraid and worried. Worsening physical and cognitive symptoms from Parkinson’s. The future with no visible means of support. Worse trouble with depth perception.
I know this is minor compared to other issues, but I tire of hearing about basketball players or baseball players with only one eye, or about whoever lost an eye and “had no trouble,” or that I’ll “get used to it eventually.” I notice every time I blink, every time I talk, or move my face, or smile, or lay down on my right side, or rub my left eye and the world disappears, or wonder why my right eye won’t open in the morning and then realize it is open, it just can’t see …
Other times, my mind is blank. I wish I could come up with a simile here, but there’s nothing left. I tell my shoulders to relax so my head can rest on the back of the couch. Fatigue is taking over and I’m moving slower. A top running out of spin.
A girl I knew in high school, and who became friends on Facebook … Her mother has Parkinson’s and Lewy Body Dementia. This family is going through a heartbreaking time as they prepare to say goodbye to a parent who doesn’t always remember who they are.
I live in fear that will be me some day. That fear causes disparate reactions. I am spending my time stretching myself and pushing my limits. Doing things I had only dreamed of. But maybe I push too far, and I am so afraid of getting hurt again, of falling, of disappointing myself and those who love me.