Valley Life for All column: Meet Missy
Editor’s note: The Aspen Times, in conjunction with Valley Life for All, continues a monthly series of profiles about people in our community who have different abilities.
Meet Missy: She is a wife, mother and friend. She has cortical myoclonus, which causes body jerks. The mobility and accessibility that we may take for granted are huge challenges for her. Her story is worth your time. She was not born with this condition. She now understands the barriers that exist for those who have mobility challenges and wants to help us understand the world from that perspective.
In Missy’s words:
When I saw Corey’s Valley Life for All story, it caught my eye. I have had trouble with things that he has had trouble with, like going into buildings. I have a mobility scooter, and I may be getting a mobility wheelchair. I can walk, but I have to use a cane because of my condition.
One day when I was driving, I had a jerk and it made my steering wheel turn. It scared me. I decided I couldn’t put my life, my daughter’s life or anyone else’s life in danger, so I got ahold of a neurologist.
I learned that I have cortical myoclonus. It makes my body jerk. I have a hard time walking. I can’t drive anymore. I have to depend on people to take me places. When the weather is nice, I get on my mobile scooter and do what I need to do. In the winter when there is snow, I can’t take my scooter out and about. I have also had problems with the scooter breaking down.
My condition makes my body jerk, and I never know when it’s going to happen. One day I passed out crossing the street. I woke up in the middle of the street. Not one person helped me. I never know when it’s going to happen. This is something I don’t wish on anybody. It’s not a fun thing.
Some places don’t have accessibility buttons to push. This makes it hard to get inside. The lights when you cross the street are on the other side of the pole than the direction you are crossing the street. It makes it hard to press the crosswalk button. I have to depend on people. I can do things around the house but to go out and about, it is worse. I’ll be sitting sometimes and the jerks will start happening spontaneously. I never know from day to day what it is going to do.
I just want people to know that it’s not easy. Sometimes people will look at you then just walk on. Sometimes people will stop and try to help you. People do need to know for handicapped people it is really hard to get into buildings. I didn’t notice it until my body started to jerk and I couldn’t walk. It was a real eye-opener.
Local nonprofit Valley Life for All is working to build inclusive communities where people of all abilities belong and contribute. We want to hear your voice. Request a training or join the conversation at http://www.valleylifeforall.org or #voicability4all. Help us redefine the perception of challenge.