It had been sitting on a shelf in my house for months now. I would glare at it like an evil uninvited guest. I did not request the cane, but my Helen Keller trainer had brought it. So there it sat. For a long time, I didn’t even venture to touch it. Ewww! The cane seemed to represent defeat and shame. I would be different. Everyone would look at me. How would they understand that I still retained some vision? What if they thought I was faking it? What if people I knew saw me? I was not ready.
My brother (who also has Usher Syndrome) did some training with his cane. He encouraged me to open up and try it. He showed me how to use it in my living room and we had some laughs as I “practiced.” It felt so foreign to hold it- like I wasn’t myself.
However, on Saturday, something shifted. I was running late to go downtown and meet my friends for salsa dancing. I grabbed the cane and threw it into my bag. I felt compelled to take it. In that moment, I feel like I viewed it as a tool and not a horrible reminder of my condition. I thought that perhaps I could skip the line to the club if there was one! When I got to 59th St-Columbus Circle, I pulled the cane out and tried to use it. It was an experiment for myself. I knew I wouldn’t see anyone that I knew. There weren’t that many people walking around at that time. It was a little hard to maneuver the cane over bumps in the sidewalk but I did notice that people moved out of the way. It was easy to put together but it was more difficult for me to pull the cane apart. Those magnets are definitely strong! When I got to the club, there was no line and I walked right in. It was a great night.
I felt a small victory because I decided to try the cane and it was not forced upon me. I want to make my own decisions of how to handle my Usher Syndrome. I know that now I am more comfortable asking for further training with the cane and seeing where that might take me. I don’t feel that I need to use it all the time, but it is a tool that could be helpful sometimes. It’s better to have it available than not. I do value the fact that it would help me retain my independence and safety. I will not be defeated. Catarina- 1. Usher Syndrome- 0.