In the fourth grade I had a class assignment of doing a report on any historical figure. I can't remember why, but I (prophetically) chose Helen Keller. Perhaps because she's the only famous deaf woman, and since being born with a hearing loss I felt some sort of connection. Whatever the reason my 10 year old self had no idea just how much I would relate to the admirable Helen Keller years later. It's a pretty amazing story she has- living in a dark and soundless world and yet managing to be successful and inspiring. Most people, myself included, can't imagine losing a primary sense like hearing or sight. I once read a statistic that most people would prefer to lose hearing over sight, and further more, would choose cancer over blindness. That second part was mind blowing to me. Cancer! But I can also understand why: there are treatments and even cures for cancer (and constant ongoing ground breaking research for it) whereas blindness isn't always treatable, let alone curable. I guess you would have better odds with cancer.
A good friend of mine just became a published author this week. She is an artist and she has the same eye disease as me. I'm a blind runner and she's a blind artist; we make quite the pair. She wrote a short memoir about living with and accepting RP. Each person who has RP has a completely unique story because it affects us all differently. I've been living with it for almost 10 years now, but Laura found out three years ago at 22. I've been legally blind since high school and she has to guide me around when we go out. While not life threatening, this disease can be isolating and soul threatening. Because it's so rare it's very likely to never randomly meet someone on the street who also has it. I'm thankful to be alive in this digital age and be able to reach out to an online community. In fact, I met Laura through a mutual friend on facebook. Our mutual friend had sought me out in an Usher's Syndrome group, and I noticed Laura write on his wall about seeing the doctor to determine if she had RP or not. I sent her a message telling her that I know it can be a scary process going through a barrage of eye tests and facing a bleak prognosis. It was out of character for me, since I had never done that before (or since). But that message started a very special friendship that I am so grateful to have.
At the time Laura was attending art school in Laguna Beach. She eventually moved back home to the East Bay to sort through the aftermath and pursue writing. She started a blog about her diagnosis process, and it was funny and honest and refreshingly optimistic. We were only an hour BART ride from each other and we made it a point to meet in person to commiserate, laugh, cry and hope together. Though we are still at very different points in our disease, there is a lot of emotional similarities. Feeling lost in the uncertainties, adjusting to a new reality with every degree lost, dealing with those close to us who don't know how to react. Putting dreams on hold, and then encouraging one another to pick them back up again.
I'm still pursuing my goal of a marathon and Laura has picked up her paintbrush again, in addition to writing her first book. For another perspective I encourage you to check it out:
Believing is Seeing by Laura Lawson is available here