My Journey Toward Greater Independence

A few weeks ago, a friend told me I had to see “Spider-Man: Into the Spider-Verse.” It was everything I loved, with amazing graphics, she said, so I couldn’t just rent it when it releases on DVD. I had to see it in theaters.

I’m notorious for never seeing movies. I love stories, so it’s not like I’m averse to the concept — I just prefer TV shows, because I get attached to characters and want to live in their world for as long as humanly possible. There are, of course, movies I make exceptions for, like “Star Wars” and certain superhero films. (Shout out to my parents, who didn’t complain when I dragged them to a movie theater in the middle of our vacation to see “Wonder Woman” before I got spoiled by the internet.) But I’ve realized that while movies aren’t my favorite medium, I don’t go to the theater because my parents have to come with me.

Take “Crazy Rich Asians,” for example. It’s a movie I desperately wanted to see in theaters, but I’ve lived with my parents long enough to know that neither of them would want to spend our preciously allotted entertainment budget on tickets. So, I just didn’t go, and instead resolved to rent it the moment it became available.

Spoiler alert: “Crazy Rich Asians” is still on my to-watch list.

We’re five weeks into the new year, and so far, my 2019 has been all about personal growth. I’ve done many things that at one point would’ve caused me anxiety. Just last week, I attended two medical appointments by myself and even asked strangers for help with the elevator. That may not seem like much, but for someone with social anxiety disorder, it’s huge. When my friend told me I had to see “Spider-Man” in theaters, I thought to myself: I want to see this movie, and I want to see it in the theater. Why don’t I just go by myself?

(Courtesy of Brianna Albers)

So, I did. I went by myself and wasn’t even all that anxious about it. I’m fine on my own, and when it comes to doing stuff by myself, it’s more a question of what could go wrong. What if my hand slips off my controller? What if my feeding pump starts to alarm? What if there’s a fire in the theater and no one’s around to open the door for me? My mind is stuck in a constant loop of what-ifs, and for once, it’s not even born of paranoia. It’s called being smart. If something were to happen, things could go downhill very, very quickly.

I’m trying to have more faith in myself this year — not because I’m invincible, but because I’ve been in many sticky situations and have always emerged unscathed. If I can have an allergic reaction and ride in an ambulance to the ER downtown and be fine (minus a bloodstain on my favorite pair of jeans), it follows that I can go to a movie by myself without the world ending.

It’s difficult navigating disability because it’s multidimensional. There’s the physical dimension: My body functions differently than other bodies, so there are certain things, like escaping a fiery movie theater, I might not be able to do. There’s the psychological dimension: I am disabled, so there are dangers I deal with on a daily basis — like getting stuck in a movie theater that’s being ravaged by fire — that able-bodied people wouldn’t normally consider. Finally, there’s the societal dimension: Society isn’t set up for someone with a disability (i.e., someone in a wheelchair), so there are things I cannot do, like opening a door to leave a room. As a result, I come with an exit strategy. I try to retain some semblance of control, so if something does go wrong, I know what to do.

But disability isn’t static. Society isn’t accessible, not by a long shot, but it’s getting better every day. Thanks to the internet, I can buy movie tickets online. If something happens during the movie, I can text or call for help. And if a door is closed, there’s a good chance someone will offer their assistance. When I asked the receptionist to help me in the elevator last week, someone in the waiting room jumped to attention, without me even having to ask. There are options. I’ve always known that. But last week, I experienced it in a real, life-changing way.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.