I never thought of myself as a writer, yet alone a poet. This past winter, I got together with a writer friend who encouraged me to continue to write. I had recently finished my masters and was looking to my next project. I was feeling a little lost of what to do next. She encouraged me to write with this writing prompt: “I begin the day with…” I thought to myself what does that mean, but as I started writing a poem came out of me that had to be written. I literally wrote it within minutes. Months pass and my writer’s group is asking for poem submissions for poems for their magazine. I thought perhaps they might take my poem. My poem that is so personal, I would feel crushed if they didn’t. I hope they would. I submitted and sure enough it is in the May edition of magazine WINK. Living with Dystonia is so isolating and living with mitochondria myopathy is isolating. Few people understand what I go thru on a day-to-day basis. It is my hope that this poem gives people insight, grace, understanding, compassion, and love.

Here is the poem:

I began the day by trying to wake up.
My body says no. It doesn’t want to wake up.
Another 10 minutes of sleep? Please.
I roll over and look at my Fitbit app.
On. Sleep. It says I only got 7 hours of sleep.
7 hours? I was in bed for about 9 hours.
I rack my brain and realize that much of that was because I was up in pain.
My back hurt with back spasms.
My sciatica muscle pulled from my back to my legs caused tightness into my legs to hurt.
As I rolled in bed tossing and turning in the night, my neck spasmed in pain

as I tried to find a good position to be in.
Oh yeah I guess now it makes sense I only got 7 hours of sleep.
This is why I am tired.
I lie in bed and decide if I should go back to sleep and try to rest or get up.
I sleep for a few more minutes. I get up. Stretch my body.
Look at my phone. WOW 50 emails come thru my phone just in the evening itself.

Mostly junk. I realize that much of my life, I live with pain and thus making it difficult

and different than many of my peers. But, I guess it is okay. My life isn’t the same.
It sucks that my day begins not as I would like, and not like that of many of my friends my age.

What should I do? Should I take more medication?

Should I take cannabis? That might help, but also might impair my driving

and cognitive function for the day, but might ease the pain. Help!

I began the day in pain.
I end my day in pain.
I end my day thinking.
I end my day the way I start.
I end my day in bed with my phone,

looking at it saying I hope I can get closer to 8 hours of sleep tonight.
I end my day saying yes life sucks to have a disability, but I am grateful.
I end my day the way I woke up,

Saying, should I really go to bed now knowing that I am in pain?
I end my day trying to do something so that I can sleep.
Should I take medication so I can sleep better but knowing it might knock me out?

I end my day the way I began.

I began my day and I end my day with trying to search for more meaning and more love.

–Nikki Abramson