My Battle with Retinitis Pigmentosa

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Many of you may not be aware and even those of you who are, I’d like to share a piece of my reality with you. I have a retinal disorder called Retinitis Pigmentosa or “RP” for short. RP is currently incurable. What ends up happening with RP is that it reduces the retina’s ability to respond to light and causes a slow loss of vision and eventually blindness. An average person has about 180° of visual field, I have 15°. Meaning I mostly have only my central vision but no peripheral vision. I am legally blind. For a long time, I went around pretending I was invincible and that the effects of this disorder did not affect my daily life. However, many bruises, stitches, black eyes, open cabinet doors that nearly knocked me out, etc., etc., etc., later, I decided it was time to do myself a favor and get myself a mobility cane aka white cane aka cane. It hasn’t been long since I made this decision and have had a hard time using it but been more open to using it recently. I still feel insecure about it, but the respect and courtesy given to me by complete strangers is one that warms my heart. I wanted to do something that would make me feel confident about using my cane more often and also hope to inspire those that have the same issue of feeling self conscience or insecure about it. To anyone who’s reading this and struggling to use it, I want you to know that, I KNOW. I know the struggle, I know how it affects you emotionally, mentally and psychologically. I also want you to know, that I think you look great, proud, strong and most of all, INDEPENDENT. These pictures mean MY independence and my desire to feel free from fear of a lot of things, not just the kitchen cabinet door, but of anyone who thinks that I’m faking it. A white cane doesn’t just mean “blind”, which is what most people assume. I’m visually impaired and this cane is my safety. In the spirit of #RPmonth, here’s one of my proudest moments. Here’s me, with my infamous bowtie in my best gentlewoman’s get up…with my cane in this amazing city that I love, Chicago. I could not be this brave without the support of those who love me most and those who stand behind me and help me feel more at ease with this decision. I am eternally grateful. Here’s to shedding a little light into the lives of some of us that don’t physically see the world as vibrant as others. I will say, my world is still made up of the most beautiful colors even with my eyes closed. Big thank you to Charlie Billups for the amazing photos#rpawareness #rpawarenessmonth#visuallyimpaired #whitecane #whitecanefashion#mobilitycane #chicago #bowtiesarecool #bowtie#dapper #dappergirls #blumaan #photoshoot#photoshootfresh

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One thought on “My Battle with Retinitis Pigmentosa

  1. I KNOW the struggle. Been teaching kids with special needs for 28 years and just recently began using a white cane for my safety and mobility, since I’ve decided to retire from teaching because I only have about 5 to 10 degrees of vision left. A lot of people had no idea I am visually impaired and look at me, like “What are you doing with that???” Emotionally I have been all over the place. Kuddo’s to you for being so brave. I only hope my journey gets better.

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