Chronic Illness,  poetry,  Writings

State of Being: A Poem

If you could spend a day in my body, you would know how mentally and physically exhausted it is.
How frustrating it is when your body breaks down when you need it to go just a little further.
If you could spend a day in my body, you would have the urge to scream at the sky and punch needlessly at the air.

You would stare at your room and hope it would clean itself.
Hope that you have the energy to move from the spot you’ve been in for an hour.
You would know patience and kindness in the face of adversity,
your old rival unworthy of any extra energy.
You would know that sometimes you aren’t patient, or kind, or even positive.
And that is okay.

If you could spend a day in my body, you would see the world from a different perspective.
You would hear no, and think “actually yes, I can. and I will”.
Take yes and run with it, with or without approval
You would write.
Write until your hands are red and your mind is overflowing with ideas.
You would write in a flow from your higher self.
You would sing until your throat is sore, mouth is dry, and diaphragm aches for a break

If you could spend a day in my body, you would spend a month because one day is simply not enough to explain this feeling of being.

If you could hear what I hear, you would hear a lot of commotion.
Outside and inside.
You would hear the sounds of ideas flowing outward in the span of a breath.
a quick sigh, contented.
You would hear the cries of people who just lost someone, the cries of people who are still here.
You would hear, always, a baby. New and angry.
You would meditate on positivity and gratefulness everyday, and always notice something new.

If you could spend a month in my body, you would feel trapped and free to do as you please, all at the same time.
On the days when you feel good and the doorstep is only a few feet away:
You would stay in even though you really wanted to go out.
You would feel grateful and angry at the same time.
Simultaneously anxious and depressed.
You would pretend to be happy even when you really feel very lonely inside
You would feel carefree and joyful
You would feel love, a lot of love.

If you could spend a month in my body, it would be bittersweet.
You would get a taste of failure and sweet mango, frozen like ice cream.
You would taste copper and cookie dough ice cream (of course, it would be dairy free)
You would taste fear and uncertainty along with savory dairy free mac n cheese.
You would taste heartache and loneliness with a cool glass of sweetened iced tea (caffeine free)

You would remind yourself to stop and take a breath.

If you could spend a month in my body, you would be familiar with the intoxicating smell of a new book.
The smell of cornbread, green beans, collard greens, and turkey necks.
All of the things that make up a southern Sunday dinner.
You would smell lavender, and put it in on everywhere you go.
And chamomile and honey in the mug of tea warm tea held close to your chest.

If you were able to experience this body of mine, it wouldn’t be sexual

You would feel breathless,
physically unable to speak.
You would fee small
under appreciated, unseen, and unheard

You would know the pain and exhaustion that comes in waves, the same as every month

You would smell the strong minty scent of peppermint
Tingling to sooth aches and pains

You would reflexively demean yourself when you have a perfectly good reason for saying no.
For setting your boundaries
and living differently outside of abled expectations.

You would know the frustration of disabled people, ignored and cast aside
Vilified for asking for what we need.

The sun would appear as a small flame, a spec in the vastness of space – anger

You would put your heart out on the internet for everyone to read, or listen to

If you could spend a day, a month, a year, you would know a lot about me
– Written after a stressful target run and subsequent episode of fatigue and weakness.

2 Comments

  • Miriam Breslauer

    On bad paralysis days, I dream of the inventions for the home I always intended to make to take care of the home tasks I just can’t do while paralyzed. It makes me mourn that I had to retire from Engineering so young.

    • Chronic Realism

      Wow, I didn’t know you invented things. Maybe it’s not too late? I’m sure there’s someone that could help you get your ideas on paper and patented and such. I understand where you’re coming from though, there are still so many things that I mourn. Like being able to watch the sun come up without being sleep deprived, or being able to go out with friends without getting tired so easily or generally not having the energy to do the things I used to be able to (although there are still many more that I can still do). There are so many things we mourn. Thanks for sharing <3

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