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My Disability Story - The Shortish Version


A brass single bed frame with a wooden side chair sits in a field of greenery. On the bed is a pillow, blanket, and an open book.
Photo by Sunsetoned from Pexels
“There is often something beautiful, there is always something awful, in the spectacle of a a person who has lost one of his faculties, a faculty he never questioned until it was gone, and who struggles to recover it. Yet people remain people, on crutches or indeed on deathbeds….” ― James Baldwin, Notes of a Native Son

My first experience with chronic illness was in 2008.

That summer, we moved into a small rental with a big backyard for the kids and dog to play in. By the time fall arrived, I was experiencing fatigue, muscle weakness, and dizziness. But by New Year's, after being cooped up inside for months in what we later learned was a house infected with black mold, I was so ill that I began worrying I was dying because of how quickly I was deteriorating...

The following summer, we moved - that was when I discovered the back corner of my closet was a disaster. My long-loved brown leather loafers were covered in black mold and had to be thrown out. I still miss those loafers. My health improved enough that I was no longer worried I was at death's door, but I was nowhere near the healthy, energetic person I was used to being. I've never returned to being that version of me. I still miss that version of me.


In 2010 I was diagnosed with celiac disease. I immediately went gluten-free and, over time, felt better and better. In 2011 I separated from my narcissistic ex and, in 2012, moved to a new city for a fresh start.

I almost felt like the me I'd been missing then.

Almost.

In the fall of 2013, I was sexually assaulted, in an auto accident, and then moved into a moldy house again (I didn't realize it had become so contaminated at the time). By the summer of 2014, all of my original symptoms had returned, plus a few new ones - my least favorite was syncope spells that made it unsafe to drive. But, a close second was when my right hand would decide to stop grasping whatever it was holding. The first time this happened, I had a muffin tin full of freshly baked gluten-free blueberry muffins in my hand that went crashing to the floor.

Numerous medical tests followed, including three MRIs (I find them terrifying!). The MRIs did show brain damage - "white spots in the grey matter," in precisely the exact location as my Abnormal Psychology textbook said to expect to find them in people with PTSD. So, yes, trauma can and does literally change your brain. If you have experienced a traumatic event, please consider therapy with a trauma-informed provider to help your brain fight off as much damage as possible. This is especially true if you are living with symptoms of PTSD listed below (list from the Disabled Veterans National Foundation website:

“A wide variety of symptoms may be signs that you are experiencing post traumatic stress disorder. The following are some of the most common symptoms of PTSD that you or those around you may have noticed:

  • Feeling upset by things that remind you of what happened

  • Having nightmares, vivid memories, or flashbacks of the event that make you feel like it’s happening all over again

  • Feeling emotionally cut off from others

  • Feeling numb or losing interest in things you used to care about

  • Feeling constantly on guard

  • Feeling irritated or having angry outbursts

  • Having difficulty sleeping

  • Having trouble concentrating

  • Being jumpy or easily startled

It’s not just the symptoms of post traumatic stress disorder but also how you may react to them that can disrupt your life. You may:

  • Frequently avoid places or things that remind you of what happened

  • Consistently drink or use drugs to numb your feelings

  • Consider harming yourself or others

  • Start working all the time to occupy your mind

  • Pull away from other people and become isolated”


Today, even though we moved out of the moldering house in 2018, all those symptoms remain.

This is my new normal.


Maybe you can relate to having to adjust to a new normal, or even an ever-changing normal that doesn't feel the least bit normal at all?


One of the truest truths about living with disability and chronic illness that I’ve learned so far is that we may have to change our plans and dream up new dreams, but we do not have to give up altogether.


Grace and Magic is about not giving up or giving in - but, instead, this is about crafting a new normal for each of us.


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