Yesterday, I hit a milestone in my acceptance of Usher Syndrome. I’ve been pretty open about how this disease effects me, as you can tell from my previous postings on this blog. There are still some things that I have been walling myself off from. Mostly for reasons of feeling like an embarrassment for my family when we are out in public. I don’t really have any issues when friends or family ask me questions about my Usher Syndrome and how it works. I have no issues with their kids asking me why I can’t see something, I can kneel down and tell them the honest truth. It’s strangers in public that I’ve always worried about.
A little over a month ago, I was doing research online for blind canes, and came across the National Federation for the Blind. They have a program where they will ship you a solid fiberglass cane, free of charge to anybody that needs it. Taking a deep breath, and doing some quick measurements to find out what length of cane I might need, I put in a request for a cane. Within the week, the cane arrived in a long tube. I took it out and tested it, then noticed a sticker that says “This cane is a gift from, Jay & Lee Sparks.” Their donation to the NFB meant that I didn’t have to buy my first cane, and I’m grateful for that. Sadly, I then put the cane back in the tube and let it sit in the corner of my bedroom, neglected. I just couldn’t bring myself to use it in public.
I’ve been having a lot of internal issues lately. A lot of frustrations and feeling like a burden. I’ve come to realize that one thing I have been doing is relying too much on my wife and kids to help me navigate in public and in stores when we run errands. I needed to make changes so that not only can I feel like I have more independence, but so that my family doesn’t always have to be looking out for me.
Yesterday, I started using my cane for the first time in a place that I felt the most comfortable. The church we have been going to since November of last year, which is called The Well in SLC. I’ve come to really love the community that is The Well. Everyone has been extremely nice, understanding and I got a tremendous amount of support from them yesterday. I’ve been solidly agnostic, essentially my entire life, we never really did much religious stuff growing up. I’ll be honest in saying that yesterday was the first time since we started going to church as a family that I actually opened myself up to the possibilities of truly learning what Pastor Jason is preaching. I opened my heart and I want to see where this path takes me.
I’ve decided that I needed to break down every barrier I have setup around myself. Whether that barrier was internally keeping my emotions bottled up, the barrier of putting myself in public with a blind cane, and the religious barrier. I am at a point in my life with what this disease is doing to me that I have to be open to every possibility, then engage in those possibilities with a whole heart. I’ve realized that taking down these barriers will not change me, I’ll still be the dorky guy I’ve always been. I will just now be able to try and live life for my family and myself without obstacles of my own construction.
Today’s run was 4.5 Miles in 51:01, giving me a 11:34 per mile pace. Yes, I am off a little bit on my runs now. Between my daughters birthday, myself being sick for three days and then my wife getting sick immediately after. I lost a weeks worth of training. I’m back on my training regime now and starting to see some changes in my body that has me extra excited.