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Why I Can't Just 'Unplug' as Someone With a Chronic Illness

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Living in a disabled body, I am grateful for my phone.

This evening I read an article about someone’s minimalist phone setup. In the beginning, I was nodding my head  —  you know, agreeing with the parts about being intentional and focusing your phone time on things that nourish you.

But as a person who lives in a disabled body, I found myself getting uncomfortable as the piece wore on and the author began (hopefully without intention) exhibiting ableist pride in their ability to hardly use their phone at all these days. I was profoundly unable about the way they patted themselves on the back for reading ‘real’ books and talking with people in “real life” instead.

Don’t get me wrong  —  I get where they are coming from.

I wasn’t always living in a disabled body.

Once upon a time, I was young and healthy and actively sought out “real life” connections and social/volunteer activities. But just as all fairy tales only tell the beginning of a story, as my story entered the middle phases, I found things changing. These days I live in a body I still find foreign, disappointing and unsettling. For instance:

  • Today I went to work at my “day job” for three hours, came home, ate lunch, and passed out for a two-and-a-half-hour nap!
  • Unloading the dishwasher and then loading it up for a fresh run leaves me breathlessly exhausted and lightheaded.
  • Grocery shopping takes all the energy I have for that day.
  • Going to church? Same.

That is my everyday reality.

And so, as I become more and more horizontally-oriented, I find myself relying on my phone more and more to connect with others, to read, to even write an article here on The Mighty.

I’m tired of (seemingly) able-bodied folks deciding they have the answer for all of us.

They do not.

They cannot imagine what it is like to be this tired, this foggy-brained and this worn-down in my soul.

They need to stop acting like their way is the only way.

There are many, many wonderful, beautiful, messed up and oddly perfect ways of being a human in this world.

Part of my way is to write on my phone, to text friends on my phone, to FaceTime my daughter on my phone, to read and read and read on my phone on the days when I’m literally too fatigued and weak to hold up a book.

Thank God/dess for my iPhone.

This story originally appeared on Age of Awareness.

Photo by AllGo – an App for Plus Size People on Unsplash
Originally published: March 17, 2020
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