Beth and I have been reading a book titled, “No Barriers” authored by Erik Weihenmayer. Erik is an adventurer who is telling his story about kayaking the Grand Canyon and also discusses his adventures of hiking Mt. Everest. He is also vice president of the board of the not for profit, No barriers USA, which began as a group of adventures that help disabled people enter the world of exploration. While Beth and I were in Chicago last weekend we met Bill Barkley, another adventurer and board member of No Barriers USA. He had climbed Mt. Kilimanjaro and ran a couple of Boston marathons and has been on a number of adventures with Erik. We first saw Bill speak at the conference and later that evening met him and shared a bite to eat. We spoke for hours, he is truly an inspiring per
son as is Erik who we have not met personally, but know of him through his book and his work at No Barriers USA.
The reason why we were in Chicago was to attend an USH Connections conference (more on this in another post) and what I did not mention earlier is that Bill is one of the roughly 20,000 individuals who has Usher Syndrome and is deaf/blind. Erik is blind as well and they both have more accolades under their belts than anything I could ever hope to achieve in my lifetime.
So as I was reading Erik’s book about his life and his adventures, I got to the page where Beth had left her book mark and it dawned on me how easy it was to be reading the same book with her. I mean, how lucky am I to be on this journey with someone who I can share the same physical book with and who never gets upset that I lost her place or complains that I am hogging it. This whole journey that we are on as a family is very similar to reading from the same book, we may not always be on the same page and our perspectives about things may be different, but we are nonetheless reading this book together. Something may be read that Beth interprets differently than I do and vice versa, but having two different perspectives on things is really what is making the whole journey that much more do-able. I don’t know about you, but sometimes I read a paragraph of a book and forget what I just read because of some distraction, this is where she is able to fill me in on some of the things that I missed and I reciprocate when the shoe is on the other foot. Sometimes Beth is ahead of me in the book and sometimes I am ahead of her but we both find the patience to give each other time for the other to get there. Sometimes we even provide each other with a little insight as to what is coming. A perfect example of this is our trip to Chicago…..
It was my first real time immersed in the world of deaf/blindness. When Bill greeted us last Saturday night I ended up leading him to the bar where we settled in for a couple of hours of talking and laughing. This was a pivotal moment for me with coming to terms with Rebecca’s diagnosis. I have not met a person in my lifetime that I felt was more independent than Bill, but here I was leading him to the bar. Clearly he would have gotten there without my help but It was a very dimly lit room and unfamiliar as well. It hit me pretty hard realizing that Rebecca will at times need to be dependent on people her entire life and I am having a difficult time trusting the world to treat her kindly. Before that day I was convinced that I was going to adapt the world to her and nothing was going to stop me from giving her complete independence, but that day I learned that interdependence was just as important. Bill in his presentation put up a slide that talked to this (independence = interdependence), but it still did not sink in until that moment when I was leading him to the bar. He further explained the importance of interdependence as we ate and had some drinks together. I gained more insight into the world of deaf/blindness in the few hours talking with Bill that evening then I ever could have learned elsewhere.
I woke up early Sunday morning and headed to the lobby for a coffee and to do a bit of work and seeing as we were staying at the hotel where the conference was held, I saw many of folks that we had met the day before, but this time it was a different setting. In the conference the previous day no one stared or whispered because everyone in that room was there to make connections with other families and people with Usher Syndrome. That morning in the lobby however while sitting with my coffee typing up an email to the office I saw the stares and whispers. There was one couple that saw another woman with a service dog and they walked from one end of the lobby to the other never taking their eyes off of her. I was just not ready to be hit with that dose of reality that the world will view Rebecca differently. So what I was just realizing or at least stopped hiding from happened roughly two months after Beth had already realized it. She had been to a deaf/blind event earlier in the year and met this reality a lot sooner than I did. She had felt the same way I did after the Chicago event, only her bookmark was much further ahead than mine so she was helping to lead the way.