Since it’s SMA Awareness Month, I thought I would talk about my disability for those who are new to my blogs, as well as learning the different meanings of acceptance and stages of grief.
Image Description: SMA Spinal Muscular Atrophy awareness month Banner
For those who don’t know me, I was diagnosed with Spinal Muscular Atrophy (SMA) at 18 months old and have been in a wheelchair since the age of 11. To explain it in a nutshell, basically, humans have an SMN1 gene that produces protein for your motor neurons, which helps with movement - like walking, moving arms, etc. We also have a backup gene called SMN2 which produces the tiniest bit of protein - people with SMA don’t have the SMN1 gene, it’s either deleted completely or severely damaged. We do have the SMN2 gene but it obviously doesn’t produce enough protein for our muscles to work normally. Therefore it causes extremely weakened and atrophying muscles. It’s a degenerative disease, so people with SMA deteriorate/atrophy at a faster pace.
Image Description: Three photos explaining the paragraph above but with images.
My body started atrophying at a rapid pace at 11 years old. It got even worse during the healing period after my full spinal fusion for my severe scoliosis at age 14. Since balancing muscles is crucial, SMA presents unique challenges - overworking or underworking can lead to muscle loss. Actually, the last time I walked a decent long distance was when I was 10. I was a very determined kid and wouldn’t listen to anyone, including my parents when they told me I couldn’t do something. Every time I was with friends I would go above and beyond to catch up with them, hiding my exhaustion, and laughing it off every time my legs would give out underneath me.
Image Description: First photo shows my spine before surgery. Second photo shows after spinal fusion.
I came home one weekend, after walking for hours with my friends, not being able to leave my own bed. After that weekend, I started dragging my left leg because my legs felt like they were weighted down by heavy sandbags. By age 11, I began using a wheelchair full-time at school. I had to adjust to a whole new way of living, and what came with that was severe bullying, not from just kids but teachers too. Teachers were actually more brutal than kids, I’m still terrified of teachers now at the age of 24. Side note, I think it should be mandatory for all teachers to take an inclusion course so they can learn to treat students with disabilities like humans. What I went through from middle school to high school has left me with years of trauma that I am still dealing with today.
Image Description: Photo with words representing Disability Inclusion.
Having a disability means I have to navigate acceptance. I don’t think I truly accepted my disability until 2020. That’s when I first started noticing that I was no longer embarrassed about who I am, and no longer wanted to hide who I was. My voice became louder for my wants and needs, especially towards my equal rights.
Image Description: First photo is a side profile of my face in my wheelchair. Middle photo is little me on a pink slide. Last photo is me in my wheelchair wearing all black and a black mask.
I think there is a misconception that acceptance is only one way of thinking, or achieving it in a certain timeframe, which is totally false. It took me 11-12 years to finally come to terms with my disability and embrace it. That shit definitely didn’t happen overnight. I also want to talk about how acceptance doesn’t mean that I shouldn’t think about the what-ifs. Because sometimes I do think to myself “This would be so much easier if I was able bodied”, or the feeling of just wanting to get up and twirl around like a ballerina, and even thinking what it would be like with a little more independence like going pee when you want without having to wait for someone to transfer you to the toilet. Just because I have those thoughts, doesn’t mean I don’t accept who I am, doesn’t mean I like myself any less, and it doesn’t mean I wish I was someone else. As humans, we all have what-if scenarios, it’s natural. Wishing something was easier doesn’t mean you don’t have a firm grasp on self-acceptance.
I think you get to a point where toxic positivity can overrun you, thinking you have to think a certain way just to feel like you’ve reached that level of acceptance where you don’t have any type of what-if scenarios in your head. What I’m trying to say is acknowledging that acceptance comes in many forms will actually set you free. It’s okay to dream. It’s okay if you haven’t reached that stage of full acceptance, as long as you’re working toward it. Toxic positivity can be limiting; embracing different forms of acceptance and allowing daydreaming moments, can be liberating. Remember, it's a process, and it's okay to grieve and be human.
Image Description: Photo of a sign that says "Welcome to acceptance. Enjoy your journey."
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