Life is Hard, but Still Worth Living

I have been bullied most of my life. I was bullied by my peers. I’ve been harassed by the system, by society. It is a common experience for many of my disabled friends, as well. It can be exhausting having to fight for everything we need, to be treated with basic human respect, and to have the resources to ensure our basic needs are met.

Still, I would rather be alive, to fight another day for my rights and the rights of all disabled people. I am proud to be disabled. I am proud to be part of a community where I know so many people fighting for our rights. I know disabled people who are changing the way the world looks at disability and at our community. Change is slow, but it will happen…it is happening!

It took me a long time to figure out that my life had meaning and value. I have struggled for years with self-doubt. I grew up around people who told me that being disabled was something that was horrible. It was something I should hate about myself, and be angry about. I was supposed to want to be “cured” and focus solely on that, as opposed to learning to live independently, whatever independently might mean for me.

When I was a teenager, I almost took my own life, because I thought that things would never get better. I believed people who said I did not deserve to be happy because I had a disability. I believed people who said I would never accomplish anything because I was disabled. Luckily, I was interrupted in my attempt to take my own life. For that, I am extremely grateful! I would have missed out on so many wonderful experiences. Things I never dreamed could be possible for someone with disabilities, like mine. At least not anything I believed might be possible when I was a teenager.

I was 19 when I tried to kill myself. When I was 21, I started dating the love of my life. I never would have started dating her if I had taken my own life. We soon moved in together, and I eventually adopted her son, as my own. I helped raise him to be a terrific young man. My partner and I have been together for over 14 years now! We have done so many amazing things I would have missed out on, if I were not alive. We’ve made multiple films together. We’ve lived in three different states. I received my B.F.A. in Film. I’ve hosted/been on panels at New York Comic Con for the past two years. I’ve spoken at John Jay, NYU, and mentored students at the White House. We’ve traveled to Washington DC, New York City, Louisville, and home to Michigan where our journey started together as a couple.

Like every relationship, we’ve had our ups and downs, including more than one hospitalization for me. Still, for all the times I have been sick or in pain or tired of fighting in a world not accessible to disabled people, all the wonderful moments are worth all of the crap thrown at me. It helps knowing that I am not alone. It helps to know that there are other disabled people, some with Spinal Muscular Atrophy, like me, others with a variety of other disabilities who feel the same way. Life as a disabled person can be frustrating and ridiculous, but there are moments with friends or family (chosen and/or blood) that are worth sticking around to experience.

I know it is hard to imagine life ever being wonderful. It took me years to realize what wonderful could mean. It is especially hard as a teenager or young adult. I never could have dreamed I would experience the joy of finishing my first film in New York City! It was one of the best moments of my life! You will have amazing moments just like this in your life, too. You just have to realize that being a teenager sucks for everyone, disabled or not. The teen years are awkward and gross, and getting through them seems impossible. It’s not. You just need to remember to Live On. You are not alone. You will find people who value you for who you are! You will find them.

Life is going to be hard. It is hard for all of us. But life is still worth living.