Finding My Village of Acceptance as a Person With Multiple Disabilities
Growing up in my Texas small town was hard. No one really understood me, nor could they fully tolerate me for more than a few minutes. “How do you do it?” they’d ask my mother.
“Because I have to,” was always her response. I was diagnosed with many things to explain certain behaviors and “quirks” as they called them. I wasn’t diagnosed with Asperger’s until I was 19 and pretty much set in my ways. “I’m weird, difficult, and I can be a pain in the ass,” I’d tell anyone. “If someone can’t deal with it, they screw them.”
Growing up, that mantra didn’t get me very far. First I was excluded from things because of my near-deadly asthma that never really went away or got better. Later, it was the fact that I was different and everyone knew. I was weird, emotionally immature and I had a hard time with social cues — not to mention I was rarely at school and no one knew when to see me, so they stopped trying. That’s no fault of their own — but it hurt. I couldn’t tell anyone exactly what was wrong. I didn’t have the words.
I switched schools my 10th grade year. Premier High School was a godsend, but it wasn’t my savior. I didn’t graduate, and by my second semester there we realized, “Oh, something is terribly wrong.”
I was in pain. Immense, relentless pain. Just brushing skin-to-skin with someone hurt. Forget hugging, or being rowdy with my friends. I appeared near-death to most people. I felt like I was dying. But when I met my rheumatologist, he told me that I wasn’t dying. I think somewhere in there, we both agreed we wished I was dying.
I had rheumatoid arthritis— diagnosed right after my 18th birthday. How dare my body do this to me? I’ve had enough stolen chances, missed opportunities and weird glances from everyone to last a lifetime. So, why? Why would I ever be diagnosed with such a thing? As far as we knew, this was random and unexplained. No one knew how I had it, I just did. I mourned quite a bit. I gave up on the life I wanted. Friends were hard to come by, and by the time I was 21 I dropped out of school because if it wasn’t my RA, it was something else. I was just waiting for that additional shoe to drop, and it was unfair. I was three classes away from completing high school — which I had very early on decided would be impossible.
To help with my extra depression from the pain and isolation, I began NaNoWriMo, or “National Novel Writing Month.” It wasn’t long after I joined that writing competition that I would find some people along my journey who understood. However, distance made it too difficult to keep in contact. But as of 2012, I would come back every November and write a novel in 30 days.
By 2014, I decided to do more. I needed more. Knowing it was a long shot, I suggested to our local library that we hold NaNoWriMo events. I was surprised to find out that they would be happy to, and that they’d be even happier if I was at the helm of it all. 2014 was a big year. I met so many people. I fell in love. I found a village of people who accepted me whether I was sick, weird, or just had too many quirks for them to handle. Once I was able to complete my first year of hosting a NaNoWriMo event, I decided to do more again. When the time came, I signed up to become an official NaNoWriMo Municipal Liaison and started my own region.
I have it hard here. It’s hard getting stares from people when I’m fully dressed with cute shoes and perfectly applied makeup. At 22, I look younger and healthier than people would expect upon first glance. So when I told my NaNoWriMo group that I am chronically ill, that I may not be able to do this or that, or I may need a break — they just shrugged their shoulders and said, “OK, we get it.” They’d pray for me, and wish me well. Between our annual meet-ups, they’d check one me and my health, and some would even take me out as a guest to wine and dine with some writing at the end of the night.
It took me a long time to accept who I was and what I had. For this town to accept it at all is surprising. So when I found my village, I found acceptance. True, sincere acceptance for who I am, what I’m capable of, and unconditional love and understanding.
For that, I am glad. I never knew acceptance would make such a difference. Apparently, it can really cause you to skyrocket. Even when you’re jumping over the moon with gratitude, you know you’ll crash; but when you crash, you know there will be someone to help catch you.
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