“Lord, you can take anything else from me; just don’t take my baby away.” — Mom
Resilience is what I had to build growing up with several disabilities. Children’s National Medical Center in Washington, D.C., was my second home.
My path of resilience started sooner than expected
A baby needs nine months to develop in the womb. I said, “Yeah, that’s cool and all, but it’s time for me to get out of here.” I came into the world three months early. My original date of birth was supposed to be April 15, 1993.
My first few months on earth weren’t smooth sailing for the most part. I had to spend about two months in the NICU. Picture this. There’s a massive snowstorm. You have been diligent about seeing your child in that unit every single day.
You brave that snowstorm to see your infant, get there, and they have an attitude. They won’t look at you, smile, or anything. I was not having it when my mother came to see me, which makes me laugh as I write this.
As I got older, I went through occupational and physical therapy for the slight form of cerebral palsy on my right side. I got 16, yes you read that right, 16 surgeries done in my young life. These included 14 VP Shunt revisions, a cranial expansion, and one-dual surgery on my right arm and leg.
If you’re wondering what the VP in VP Shunt stands for, it’s a long word that’s exhausting to say. Trust me. I’ve tried several times. You can google it if you like, but essentially, it’s a device that helps prevent fluid accumulation in the brain.
People with hydrocephalus need this device, and after a while, it stops working, but there are no adverse health effects.
It’s a lot. I know. I always managed to have a smile on my face as a kid.
There was one problem. I didn’t truly embrace my disabilities. I had the mentality of, “I just want to be like other kids.” This mindset is harmful because I didn’t embrace my disabilities the way I should have. Therefore, I wasn’t confident in spaces and situations that called for me to be. I still struggle with this.
That proved to be a detriment to my personal growth. Instead of going toward opportunity, connection, and fun, I retreated because I felt like I didn’t belong; Time and time again, that’s how the world showed up for me. It brought me people and situations that would show me how I felt about myself.
When you embrace all the parts of you that aren’t the status quo, you can be the most authentic version of yourself. Authenticity looks good on you.
Being different is an asset.
Resilience comes when you handle adversity one day at a time
I was today years old when I found out that seizures are a symptom of hydrocephalus. My diagnosis of mild seizures came out of nowhere. It was a perfectly normal day in 2005. I was outside playing basketball with my friends at school.
Usually, what would happen in this scenario is I catch the ball at the top of the key or perimeter (there were no lines to specify this), and it hits the bottom. Clean.
Instead, the ball hit me in the head, and that triggered the seizure. I remember it doing so; I started twitching on my right side and walking around in a circle. The next thing I knew, I was in the hospital.
When I learned that I had a seizure, I said, “Well, as long as I know what I’m dealing with, I’m good.” You don’t know what you’re in for with this, so how can you be so sure?
Here we go again. Just when I think I have this under control, I have a seizure and my whole day/routine is ruined.
It was common for me to be upset when they occurred because I had to go back to square one. I felt like all the work I put in to prevent this result had gone to waste. Thankfully, I have grown out of that mindset. I’m proud to say that I went for almost seven years without a seizure.
After countless seizures throughout elementary, middle, and high school, it was a relief to be at this point. They’re under control now, but not gone forever. I still take medicine, and that’s not a big deal. My epilepsy and other disabilities are a part of who I am. They’re not a dark cloud to be ashamed of.
Disability advocacy gave me a community of resilience
Being introduced to disability advocacy after graduation from the University of Maryland (Go Terps!) was a revelation. During my time with RespectAbility in 2019, I worked with people with various disabilities, and they remain focused on pushing the disability community forward. Diversity, equity, and inclusion are not only necessities but requirements for us to thrive in education, employment, TV, and film.
I learned the term “inspiration porn.” The idea that non-disabled individuals put people with disabilities on a pedestal because we have them. I had to avoid it at all costs when sharing content on the nonprofit’s Facebook and Twitter pages.
My experience gave me a new perspective on the disability community, our issues, and how I view myself. I still have some work to do to unlearn previous harmful beliefs, but I’m gaining ground.
Ultimately, embracing who you are, fully and unapologetically, is a decision that only you can make. It’s never too late. Know that it takes work to build a new foundation and maintain it.
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Previously published on medium
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Photo credit: by Brett Jordan on Unsplash