Using a wheelchair, breathing on a ventilator, and turning 65, one could say that is quite the accomplishment.
I was born with Rigid Spine Syndrome, a progressive disease that has influenced my everyday life for 65 years. This rare form of muscular dystrophy didn't affect me as much growing up. However, my muscles were considerably weaker than average. It wasn't until July 1996 that I started using a wheelchair and ventilator because of my disease's progression.
Looking back on my journey, I see it as having two lives—the one before I became disabled and the one after. I am ever so grateful for the first life as I could do almost as much as others. I traveled to different countries and parts of the United States. I enjoyed hiking, bicycling, and playing golf. I went on many adventures like sky diving, swimming and snorkeling in the Caribbean. My most memorable adventure was hitchhiking from Oregon to Montana and then back to California.
I wouldn't say that my previous life was better than the life I have now, though. The difference is that I am experiencing new and different adventures. One's that can only be from a wheelchair. The significant difference in this life is that I am more involved with the community. With twenty-five years of visiting parks and trails, I have spent several years helping parks be barrier-free and accessible trails better maintained.
Now that I am 65 years old. What now? That is a question I have been asking myself the last few days. As it turns out, 2021 could be my busiest year in a very long time.
I plan to write a review for a couple of accessible trails and then post on my Adventures from a Wheelchair blog. Beginning of May, I will be publishing a new short story. In the Fall, I plan on publishing a collection of short stories. I am also looking forward to continuing to work with Santa Clara Valley Open Space Authority. There are other items that I will be working on and will share about those in the future.
Living with a progressive disease, I have learned to accept what I can do and be honest about what I cannot do. This is not easy at times because there is so much I want to do to help our recreation areas be barrier-free and inclusive for everyone. Fortunately, others share the same goal and passion, like Santa Clara Valley Open Space Authority. Together, we can be an example to other California communities on making sure that everyone can have equal access to nature and with no human-made barriers.
Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul. John Muir