People are often commenting on how lucky I am to live life the way that I do. I felt it was time to share my story as to why I have chosen the life that I have. I was recently at a conference with a speaker that shared his story of life with no arms or legs and how he hasn’t let it stop him. Everything we do in life is a result of the choices we make. We are only a victim of our circumstances if we CHOOSE to be.
I was shown from a very young age just how short life truly is. You see, I grew up the oldest of 3. I was the only girl and the only one not in a wheelchair. I had 2 younger brothers with Spinal Muscular Atrophy, and often had people telling me how sorry they were that the boys were physically disabled and in wheelchairs. I always responded that that was the exact thing that made me who I am and there was nothing to be sorry about, especially since they were born with it so they didn’t know a different way of life. Growing up I started volunteering with the Muscular Dystrophy Association at the age of 8. I was helping my mom as volunteer coordinator by the time I was 12. Through this, I got to know so many other kids MY AGE, that would never live to be adults. I have watched kids pass while I was still in elementary, junior high and high school. My brothers taught me to never let my circumstances control my ability to live my dreams or live life to the fullest. It is a lesson I have worked hard to teach my son since he was only 2 when my youngest brother, and biggest inspiration, passed away. He was 6 when my second brother passed.
We were a very talented family and had plans for me to be their manager in the entertainment industry because Dan was a very talented writer with dreams of making movies and Chris was an actor that was going to be in those movies. We still have those screenplays with hopes of someday getting at least one produced. Now here’s why Dan was my biggest inspiration. He NEVER TOOK NO for an answer. Wheelchair be damned, he was going to do exactly what he wanted to in life. Dan had a genius level IQ, but chose to drop out of high school when he started having anxiety attacks from going to school as a result of the interference of nosey teachers that felt being in a wheelchair meant you should automatically be placed in the Special Education class rather than mainstreamed. Keep in mind this was back in the 80s and 90s. Things were a lot different education and accessibility wise. But he didn’t let that stop him. He went to the local community college and participated in their 2 plus 2 program that earned him his high school GED at the same time as his associates degree. He then applied to the school of his dreams and was rejected, but that still didn’t stop him. He went to Hofstra University instead to continue working on pursuing his dreams. He had a home health aide and lived in the dorm just like every other student. He completed a year of courses, then reapplied for the school of his dreams where he WAS ACCEPTED. The Dramatic Writing program at NYU, which at that time only accepted 40 students per year. While doing this he was also applying for his short term goal of a summer Emmy internship. The first year he applied, they saw his talent to make him a finalist. As a finalist, he had to submit a video OF HIMSELF, which meant they now saw that he was in a wheelchair. They weren’t quite ready for that and he didn’t get the internship the first year, but again that didn’t stop him. He moved to NYC for his first semester at NYU, again living in the dorms. This time there were issues finding him a home health aide and mom had to go help until they could find him one. Unfortunately 9/11 then happened so they never did find him an aide. He went through that semester living life, being a part of production groups and meet ups that he helped to launch and just showing people he didn’t give a damn that he was in a wheelchair and that it wasn’t going to stop him. Fast forward towards the end of the semester when he was selected again as a finalist for the Emmy internship. He submitted his video. Sadly he was then taken from us as a result of injuries from being a passenger in a car accident caused by the careless driver he was riding with. The day of his funeral when my family contacted the internship, we learned that the decision was to be made that day between him and one other finalist.
With role models like that, why would I ever live my life any differently than I do??? Live your life the way that you want to. Surround yourself with those that lift you up and encourage you because they are living their life with no regrets and no apologies for who they are. I am a single mom who works for myself and travels on a very small budget. I am fortunate to have amazing friends that will help me make shit happen, but also know that I will be completely honest if I just can’t afford to do something that I am invited to do with them.
One of my favorite quotes of all time is “Nothing can dim the light that shines from within.” ~Maya Angelou. It’s actually going to be my next tattoo.
Find your inspiration, it’s not necessarily the same as your why, then start living your life to the fullest in whatever way that means for you. Don’t let anything stand in your way.
