The Clock I Can't Read

When I was little, I remember watching a movie called Jack, starring Robin Williams. It is about a boy with a disease that causes him to age rapidly. By the time he is ten, he looks like a forty-year-old. The story follows him as he deals with his disease while entering into a society that doesn’t initially understand him. One of the things that stuck with me after watching the film is there is a question of how much time Jack truly has left due to his rapid aging.

It made me wonder about myself with my disability. Back then, I knew my muscles would deteriorate due to muscular dystrophy. However, I had lots of questions. How much would my muscles deteriorate? Will I have to eventually use assistive devices? Will the disease shorten my life? Then the thoughts drifted to whether I will be able to achieve the average milestones that able-bodied people experience: driving a car, living on my own, traveling on my own, having my own place, dating, getting married, having children, maintaining a job, etc? I tried not to worry about those things, but there were always hints of those questions in the back of my mind, especially when I saw former classmates posting about kids, marriages, and career moves.

Turns out my life ended up being a mixed bag. As I have mentioned in previous posts, my disability has gotten to the point where I am bed-bound for the most part and attached to a ventilator at all times. I wasn’t able to do the things I like to do, like living on my own, dating, and marriage (mostly due to not putting myself out there enough), and having children.

However, I appreciate the things that I was able to accomplish before my disease took a turn for the worse. I was able to travel to Chicago, Mackinaw Island, and South Dakota without my parents coming with me. My favorite was my trip to Mackinaw Island. My sister and I went with just our church group. I thought it was cool that the island didn’t have any vehicles. You either had to walk or ride around in a horse-drawn carriage. I was happy that everyone walked at a slow pace so that I could keep up. The weirdest thing about the place was the bats. They were everywhere, including the hotel we were staying at. One guarded the elevator to get to my floor. I had to inch around it to get to the elevator door safely. Overall, it was a good trip.

What surprised me the most was that I was able to work as long as I did. I worked from the ages of 19 to 37. I had a variety of jobs, ranging from a calendar store assistant, a school registration office assistant, and a call center representative. The calendar store job was the one that was unexpected. I originally applied to work at Borders bookstore. I wanted to be at a place where I could be around books all day and read in between working. I was excited when they said that they had hired me. However, they said I would be working at their separate calendar store instead. I didn’t even know that was a thing. I initially thought that it would be a slow job, but I was so wrong. People loved their calendars and came in droves. Especially, the kids who were looking for the High School Musical and Suite Life of Zach and Cody calendars. It was a busy job, but it taught me a lot about community service that I used for future jobs.

I think one of the highlights of my life was being able to get my driver’s license. I was the first in my family to get my driver’s license on the first try. I was excited not to have to wait for someone to take me places and go out on my own. It felt exhilarating to have agency to drive alone. I went everywhere I could, like the movies, restaurants, and bookstores alone, and it was great. I even got my own car, a Kia Soul. It was one of the cars that came up where the reviews said that it was easy to get out of, and it drove smoothly while I was able to use it. It made me feel normal because my disability didn’t prevent me from using it for a while.

Everything I have experienced so far has helped me realize that I can’t just sit around and watch life go by. There are things that I want that are unlikely to happen (living on my own, or having children); however, I have things that I still look forward to, like books, anime, TV shows, and movies coming out this summer and fall. I am also looking forward to expanding my career. I have mentioned in previous posts that I am currently writing a memoir. On top of that, I am working on my first digital product to release in July or August. I have a long-term goal of being known as a novelist and an anime and book reviewer.

While the future is uncertain, I have promised myself not to waste the time I have left. Even though there is a lot that I cannot do, I am determined to go after my dreams that are attainable. I don’t want to leave this world regretting that I didn’t go after my goals at 100%. I don’t know that I will be able to accomplish everything I set out to do, but I will enjoy the ride nonetheless.