Drawbacks, Challenges and Optimism
These days, members of my RP (Retinitis Pigmentosa) Family Support Group on Facebook are sharing photographs of their eyes under #RP Challenge or #RP Eyes to promote awareness of the disease that eventually blinds them. From children to adults all around the world, people are coming forward with their stories and challenges.
No one’s journey is easy and no one has exactly the same challenges–though we have some common symptoms: night blindness, tunnel vision and a host of other difficulties that ultimately lead to blindness. We’re all at different stages of losing our vision. This #RP Eye Challenge actually brings greater unity and even a celebration of honesty among us while it also acts as an outreach to others who don’t know about our hidden disease. With RP, our eyes appear unaffected. I can only speak for myself but sometimes I preferred others to think me as clumsy or an airhead, even drunk if that meant I could remain in denial and hide my vision loss a little longer. I’m sure others do the same.
I could relate to how one man described his life: “…walking around blind with everyone noticing but me.” He explained that he didn’t need a cane yet but that he can’t function comfortably without it. On occasions when he tries to use a cane, people watch him suspiciously. I felt the drawbacks and especially his loneliness. It’s hard to live in that confusing uncertainty. I know because I lived it, too.
The RP Challenge starts with a hash tag and a description of one’s eyes. Here I go.
These are my plain Jane brown #RP eyes. When I lived overseas, my closest expatriate friends had sparkling blue or deep sea-green eyes that the locals gushed over. My nondescript eyes were often overlooked. But once in an apparent gesture of kindness, a South American neighbor lady sweetly added, “And you, you have … ojos de caballo.” I had horse eyes? I mulled that over and concluded that, of course, that could only mean I had gentle eyes. Kind eyes. Trusting. Compassionate. I took what I could get back then!
But you know what, I love my eyes! I’m so grateful to have gentle, compassionate eyes that I can see out of, however faulty that vision is. I appreciate these eyes that have laugh lines (maybe that’s just my sneaky way of trying to glam up my wrinkles and crow’s feet!).I value having eyes that welcome people into my life. I still trust. And have faith. People can see this in my eyes. In eyes that can’t always see out.
It’s been twenty-five years since I found out I would progressively lose my sight. Like everyone who struggles, I’ve had to continually adapt. But for me, it’s been pretty positive with a few off-putting detours. I choose see myself traveling on an adventurous journey, even when I can’t see what’s coming ahead before I bang into it!
This song, Journey On by Ty Herndon, encouraged me. Some of the lyrics really speak to my heart and make me more determined to incorporate them into my life:
Make the most of what you’ve been given
…grab a piece of rubble from the wreckage
…don’t be afraid to ask for new direction.
I hope this song speaks to you with whatever you’re facing as you, too, journey on!
You have just read “Beloved Eyes.” Copyright Amy Bovaird September 2014. If this encouraged you, pass it on to others to help raise awareness and give them a lift in their journey!