Day 23: #RollTheBones

Lorin and Dean Brothers with RP

Louise the boys sister who also has RP

The internet is a fascinating place for blind people. With adaptive technology it has opened up doors to people who otherwise would have minimal contact with the world due to lack of sight. I belong to a group on Facebook apply named Retinitus Pigmentosa, which also happens to be the name of the condition my husband and many other people throughout the world suffer. I've been told one in ten thousand people have the gene for this disease and it is a recessive gene. It takes two genes to make this come about. In some families I have been told that only the boys get it, in others, such as in my husbands family,(a family of 6 children) both the 2 boys and 1 of the girls inherited the condition. It is the leading cause of blindness in teenagers and in some families like ours the condition comes in to play early in life and in others not until they're older. It's almost like playing Russian Roulette with time for these people who carry both recessive genes. Not knowing when their hand has been dealt and they bid farewell to their site forever (or at least until there is a cure)  In this group on Facebook individuals  reach out to each other for advise and record their life time struggles. One young woman wrote this piece yesterday that touched my heart because she shares the same questions that both my blind husband, brother-in-law and sister-in-law have thought about and have shared with me over the years. Thanks Katey for allowing me to share this on my blog.

"Lately I've been thinking about how people view me (a legally blind individual).  How do they perceive me? Would their judgement of me change if they knew my story? Below are the top 5 things I wish complete strangers would know about me, a visually impaired individual. Feel free to share! 

1) It takes courage to step out the front door:  

I'll be honest... I worry... A LOT! Should I? No. But I do, and most of it's due to my constantly changing vision. Thoughts like: Will I walk into anyone today? Who's going to drive me to work? How will I find items in the grocery store? What if there's an emergency? What will people think of my seeing eye cane? Will they think I'm faking it? AHHHH! The "What If!?" factor of life when losing vision is insanely stressful... but what would make it less stressful? If people around me knew my worries. Maybe instead of a mean stare when I accidentally bump into someone, I could get a "Hey, no worries!" instead...  or if I whip out my cane to help alert people I have poor vision (but can still operate my phone) I'm able to do so without someone assuming I'm "faking it"... What a lovely life that would be eh? 😉 

2) I still want to partake: 

I enjoy my family and friends, and I enjoy socializing! Will there be some obstacles to overcome? Yes, but with your help I'd be more than happy to go to the bar, movies, mall, or concert! Invites are always welcome (whether you think I'll be able to see or not). It's the thought and support that counts! 

3) I have a future and goals, just like you: 

I'm often asked "What are you going to do with your life if you can't see?" My answer? Get an education, have a secure job, start a family, and reach every goal I've ever wanted to accomplish. Sounds like a regular persons response right? Well it is! Believe it or not, I can be just as successful as you! Life is never going to be "normal" with this condition, and I've learned to accept that. But you know what life WILL be? What I make it. 

4) I desperately want what I can't have: 

You know that drivers license in your wallet? I once had one of those... but voluntary gave it up due to becoming legally blind. You know that job  you hate? I would give anything to be able to work it. You know those stars you see at night while camping? I've never seen one in real life. You know the places you go to visit? I hope to see those one day before it's too late... Now, this goes without saying, but I'll say it anyway... Everyone has something that another person wants... that's life! But it doesn't mean we can't grieve the loss of something we once had, or accept the desire to want more. 

5) Life goes on, and so do I: 

I've been dealt a hand that has challenged me, brought me to my knees (literally!) and made me question EVERYTHING. Can I keep asking "Why me?" Sure. But what's that going to get me? Absolutely nothing. What I can do however, is accept the hand I'm dealt, play it as best as I can, and #RollTheBones in this game called life! 

Much love, Katey Duppong"