chronic pain · crps · disability

living out loud

 This is the first photo I publicly shared of me in a wheelchair.

May 2, 2015.

It was my second non-medical outing I had gone on since I lost the ability to walk normally in February.

The very idea of people seeing me in such a vulnerable personal place was so anxiety inducing.

I of course chose our town’s big holiday Apple Blossom to “come out”. The only way to explain Apple Blossom is that it is a redneck Mardi Gras. The whole town shuts down to celebrate and downtown Winchester is crowded with parades, carnie foods, and many many loud drunk people.

I remember doing my makeup in bed that morning, desperate to try and look “pretty”. I must have changed shirts 4 times.

My wheelchair back then was a insanely heavy clunky rental transport chair. I still wanted to believe this was a short term thing and refused to even consider getting one long term. I remember feeling incredibly nauseous as we got closer and closer to downtown. How many times I wanted to tell Sean to turn around and push me back to our little cape cod house. How every uneven and bumpy sidewalk made my foot and lower leg hurt more.

I had already had a harrowing experience on an Amtrak train a few days before, coming home from seeing my neurologist in New York City. It was my first time really understanding that even in 2015, our world is anything but disability friendly.

It was humbling and humiliating.

I felt that same hot shame as we made our way downtown and ran into hard terrain after hard terrain.

First there were train tracks. Thankfully a man kindly helped Sean lift me and the heavy chair over the tracks while I looked at the ground below, too scared to see people’s reactions.

Then there were bulky electrical cords snaking the street and sidewalks as one of the main roads downtown turns into a carnival food mecca. Each one made one of us curse and I think I must have asked Sean if he wanted to just give up and go home at least 5 times.

The huge crowds also became problematic. Trying to make our way without clipping someone’s achilles heel or avoiding a wobbly drunk from slamming into the wheelchair was like playing Mariocart.

We stayed downtown long enough to eat some carny food and take in the sights. The white stain on my shirt is from powdered sugar on top of a divine funnel cake. It seemed silly to not do all our normal activities especially given the amount of physical effort it had taken to get us there.

After we ate all the fried foods we eat each year at Apple Blossom, I asked a stranger to take our photo. We had not been able to go to Apple Blossom the year before because I felt too sick. Just being able to go was truly a big deal for me. I wasn’t sure I wanted to post the picture online but I wanted to commemorate that we had gone out and done something we used to do.

So then we made our way home.

Over the electrical cords, through the crowds, over the train tracks, and then the rocky uneven sidewalk. I crumpled into bed, pain pills in hand.

After laying quietly I grabbed my phone and posted the picture. I was tired of living in the shadows, too ashamed of what my body had become.

I wanted to live out loud.

***

I look at that photo now, 2 years to the day and first think “Man my husband is handsome”.

Then I see me.

I can see how uncomfortable I am. Probably in a lot of pain and terribly anxious that I will see certain people as we made our way to the downtown mall.

Some people may say I talk about being disabled too often. That may be true. I don’t do it for you to pity me, I don’t do it to get attention. I talk about it because it’s now a huge part of my life and my identity. I talk about it in hopes that another human who is grappling to come to terms with their new body can see that they are not alone and to be gentle with themselves.

This is a process. Some days I still get horribly anxious in public, some days I feel like a thing instead of a woman. You want to not be cat called? Get a mobility device and no dude will bother you again.

There’s something raw, complex, and powerful to have people know something is “wrong” without knowing anything about you,

I want to reach through this photo and hug myself. To tell her it isn’t the end of the world. To tell her one day you will feel beautiful and pretty even though your body isn’t the same. That you won’t always feel like a sideshow. That it will be hard and incredibly challenging to go from able bodied to disabled but that this isn’t the end of your life.

I can’t do that so instead I say it to you, whoever stumbles upon this while trying to make peace with a weird erratic angry body and a mobility device that brings up a myriad of complex emotions.

This isn’t the end, it’s just a different beginning.

2 thoughts on “living out loud

  1. Oh Genevieve, this is so spotty on. So real and honest and beautiful and while I hate that you’ve had to live it is love that you’re reaching back for everyone who comes behind you.
    And man, so remember my first day out in a wheelchair. Why does it make us feel so ashamed?

  2. U and I share almost all symptoms of RSD and Lyme. I got lucky with it generalized full body. Just now getting hands back.

    I’d really appreciate if u might have the time to email me direct?

    I have little to no support and living in a horrible situation. I can’t wait to get my head straight as u appear, so I can finally fight back for myself. My own family even betrayed me as they still think I’m exaggerating the horrific pains.

    Regardless, pls know u have really helped me through your writings. I’m grateful,
    Rich
    Profi7e@yahoo.com

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