Coffee Talks: Going Through a Vision Decrease

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This past Monday, I had a day filled with both happy and sad tears. It was a bit of an emotional roller coaster. I had an appointment to get new bifocals and just do a basic eye exam. After that yearly appointment, I then make an appointment to see my retinal specialist. Any eye related thing comes with multiple emotions for me.

This time, I was excited to get new glasses, but I always dread getting pictures of my eyes when it’s not with my specialist. Anytime I go to the regular eye doctor, I’m treated as a bit of an anomaly. My disease, Retinitis Pigmentosa is rare, and I get mixed reactions. You can learn more about my disease with this post, Blind and Capable.

The people doing the exam tend to be shocked that I’m legally blind and have been since my teens. Some even accuse me of lying. Then, they are baffled by the pictures of my eyes. Honestly, they sort of treat me like an animal at zoo. They poke, prod, and get excited by my disease. I have even been asked to get extra pictures of my eyes, so they can use them for teaching purposes. That’s something I don’t mind.

What I do mind is way that they disregard that I’m an actual person. I’m not a test subject. Also, I’m blind, not deaf. However, they talk about me as if I can’t hear them. Usually, I laugh and call them out on their ridiculous behavior. This appointment wasn’t as awful as others, but I still cried more than I care to admit.

Changes and Decreases

With my disease, my vision will continue to deteriorate. There’s no cure, and I accept that. I have about 8% left of the visual field in my left eye. My right eye has some light perception, but that’s it. What was found at this appointment was floating pieces of bone fragment in my eye. I’ll learn more at the specialist, since the standard eye doctor can show me the pictures and what’s in my eyes, but they can’t really tell me much else.

The changes in my eyes have been causing me to struggle a bit more than normal though, especially with blogging. I have low vision aides that help with blogging and writing, but that doesn’t make things easy. Using zoom, larger fonts, readers, and more can be really beneficial, but there are still challenges.

I can’t just go and look up my analytics and see a pretty chart with all of my statistics the same way the sighted bloggers can. It takes me longer to do everyday blogging tasks, and lately it’s been weighing on me. I’ll get through it, but I wanted to be open about what I’m going through.

Acceptance

I stopped being angry about my diagnosis a very long time ago. However, I still have challenges I need to overcome. Lately, all I want to do is grow my traffic and sessions. Housewife Hustle is my job. I want it to thrive, but it’s not always easy being blind in a sighted career choice.

Confidence is something that has pushed me through into positivity. I know my message is good, and I believe in myself and what I do here. At the same time, I do struggle with not having the ease of sight when blogging. Blogging is hard enough as it is, and adding in very little sight makes me have to work even harder.

I’m not complaining, because I’m fortunate enough to not be completely blind yet. There’s still bits of vision hanging on, and I’m so grateful for that. Explaining what I can see is best described as looking through a straw and the end is dim and like looking through dirty glass. Some days, I have floaters that look more like broken glass than dirty glass. So, I wanted to make a visual example to show you all as well.

This is a depiction of how those with RP see in comparison to those with regular visoin. The left side shows a field of yellow flowers with mountains in the back. The right side shows a small tunnel that only captures some of the flowers and is very blurred and dim.

You can now imagine how difficult it is to try and blog with that small tunnel. Through all of this, I’m still incredibly proud of how much I’ve accomplished, blind or not. Blogging is hard. Writing a book is hard. Being a mother is hard. Yet, I do and have done all of those things. Adding a disability to all of that is something I can’t eloquently put into words.

Not Brave, Just Living

Please, don’t comment how brave I am. I’m not brave for living my life, whether I have a disability on top of it or not. Maybe you can say I’m brave for being so open about it, but I’m not brave for being a blind woman. You can read what not to say to someone with a visual impairment if you’re searching for more too.

Now, I want to share the good from my appointment. The happy tears that I cried were because of my husband. He has a hard time seeing pictures of my eyes as well, because it’s not easy for anyone. So, he decided to surprise me with an amazing pair of Michael Kors frames.

I grew up without a lot of money, and my parents couldn’t afford very nice glasses. I don’t fault them, and I couldn’t even afford nice ones when I was starting on my own. My entire life, I have picked out frames from the small cart in the back of the store, because it was what my insurance would cover the most.

I’m not ashamed of growing up without a lot of money or the best insurance. There’s so much gratitude that I have towards being able to have the eye care and resources that I’ve had. However, it was a wonderful and overwhelming feeling to be able to get a designer pair of frames.

Take Care

Do me favor. Don’t take away any pity from this post. I want you to take care of your eyes. Go to regular exams. Wear sunglasses. Just be kind to your eyes for me, please.

I can’t wait to show you all my new glasses when they arrive. I hope you have a great day, and I’m happy I could share a bit more about myself with you all.

-With Love,

Jenni

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12 thoughts on “Coffee Talks: Going Through a Vision Decrease”

  1. I can relate to a lot of this. People tell me all the time how proud they are of me when I go out to a bar, restaurant or concert for just living my life…I guess they think I should just be sitting at home wallowing in self-pity or something.

  2. Jenni, you are an incredible woman. You should know I would tell you this whether you had full sight or not. You continue to inspire others with your honesty and positive body messages. I love that you are so open. I always look forward to your posts. xoxo

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