Cerebral Palsy is a challenging condition at times, but that doesn’t mean I don’t experience a unique kind of joy. For example, in March of this year, my new power wheelchair was finally delivered. The night before the wheelchair was scheduled to arrive, I hardly slept. I felt excitement akin to what I felt on Christmas Eve as a child. The following morning, I waited eagerly in the driveway for the company’s van to arrive.
Once I saw my new power chair, I couldn’t wait to get in it. I felt the same way as I imagine some people might feel when getting a new car. It was all shiny and new. After the assistive technology professional made the final adjustments and I signed the paperwork, I happily raced around my apartment. I had waited for eighteen months for my new chair to come.
One of the first things I did was use my power wheelchair’s seat elevator to get myself a glass of water. For once, I didn’t have to worry about trying to hold a drink while walking around in my walker. It may seem trivial to be excited over a glass of water, but it represented greater freedom and independence for me.
I also find joy in using the Internet and social media to connect with fellow disabled people. When I read the blogs and social media posts of fellow disabled people, I find it comforting to know that I am not alone in this world. One of the most challenging things about having a disability is that sometimes it can be isolating. One of my favorite blogs to read is The Squeaky Wheelchair. Kathleen’s stories about hiring personal assistants and experiences with having cerebral palsy are all too familiar to me. From picking out a new color of a wheelchair or AFOs to turning 22 and aging out of pediatric care, these are experiences that are a bonding experience among those in the disabled community.
Cerebral Palsy is not without its challenges at times. Despite that, I am also thankful for the unique variety of joy that my disability has allowed me to experience, and even more so for the people it has allowed me to meet. I’ve met so many different people. Among them are many fellow disabled people I connect with through the power of the internet to my team of doctors and other providers. I am fortunate to have gotten to know excellent doctors, physical therapists, and personal care attendants over the years.