“‘There is no cure. All we can do is continue to track your vision loss, and hope for the best.’ The words from my retinal specialist rang through my young teenage ears, unable to truly process the significance of what was just said. This phrase was all too familiar, yet still sent a shockwave of fear of the unknown after each utterance from multiple doctors. Blindness. What is that like? Will I have a successful and fulfilling future, even without sight? How much time do I have before I’m no longer able to see? Why me?
My name is Katey, I am 27, and I have a rare genetic condition called Retinitis Pigmentosa (RP). Every day, I am being robbed of my remaining vision and if no cure is found, I face the possibility of total blindness. To say that living with this condition is like a ‘race against time’ is an understatement. Each and every day, I am faced with two choices: 1) Give up and feel sorry for myself or 2) Get up and make a difference. While I may not have control over my vision loss, I do have control over how I handle what’s being thrown my way.
I’ll be completely transparent. This is my first time telling my entire life story to complete strangers, and although it’s nerve-racking, I have one goal in mind. I want you to walk away from reading this with a new outlook on those around you. The elderly woman you saw at the coffee shop this morning, the waitress from last week’s dinner, the barber who cut your husband’s hair yesterday, the UPS man who almost ran you over a few minutes ago — they all fight battles we know nothing about. To judge a book solely by its cover is foolish. The same goes for judging those around you. If you take away anything from my story, please let it be this: Be kind. Always.
My childhood was absolutely amazing. I truly have the best family in the entire world, hands down. My parents raised me to be a confident, positive, independent woman, and I am forever grateful for that. These traits have helped me get through the hardest days of my life. Around the age of 5, while visiting Disneyland, my mom and dad noticed I was having trouble seeing on some of the dimly lit rides. My dad (having RP himself) knew all too well the struggle with this. After some consulting/family history tracing, we determined I was most likely just a carrier of this disease. Throughout my childhood, I had random moments that made me question why I wasn’t seeing like everyone else. For example, running into mailboxes on Halloween night. Did you know that most people don’t do that? I had no clue! (Joking of course.) Or that people could see well enough in movie theaters to walk up the stairs without a flashlight or an arm to hold? Amazing, right?
All jokes aside, with RP, night vision is usually the first to go or is nonexistent, so any dimly lit or dark place is typically avoided in our family outings. Although there were moments during my young childhood where my condition reared its ugly head, I was constantly shown how wonderful life was, even if we had to do things a bit differently.
My teenage years were like most. My two best friends, Jessica and Kaylee, got me through the most awkward phase of my life and to this day, are my rocks. I was the president of FCCLA, received my letter in Sports Medicine, and was on the newspaper staff. I got my license at the age of 14 and was able to drive during daylight hours. While things were fairly normal, there were still instances where I had to address my imperfections. School dances, pep-rallies, dating, and social gatherings on the weekend were never enjoyable with my lack of sight. Note-taking during class was nearly impossible, so handouts were given to me ahead of time, which of course made me stand out. Power outages and lockdown drills were stressful and frustrating, causing overwhelming anxiety. All things considered, however, I was good at hiding my condition, and most of my classmates had no idea about the struggles I faced daily.
Around the age of 15, my parents decided to take me to an out-of-state retinal specialist for a second opinion. After explaining the situation and our family history, he was dumbfounded as to how I could possibly have X-linked RP. According to family history, and what they knew about this condition, I should only be a carrier. To this day, he considers me a medical mystery. When I’ve had checkups locally, I’ve had doctors call me a guinea pig. Nobody understands how this situation is possible, and everyone wants to play detective. I ended up getting a genetic blood test and 2 years later, it was confirmed I indeed had X-linked RP.
In 2011, I graduated high school and started college about 6 hours from home. My parents taught me how important self-advocacy was and to be honest, this is something I’m still working on today. My first semester of college was overwhelming. I joined a sorority (shout out to my Kappa Delta ladies!) and tried my best to not let my condition interfere with the college life I had dreamed of. Reality sunk in very quickly, however. The sorority house was dimly lit and the campus terrain wasn’t the easiest to maneuver around. I felt depressed, unsure of myself, and decided to go back home. Once home, I continued taking classes at the community college, eventually earning my associate’s degree, and then years later, my bachelor’s degree.
By the age of 23, my vision started to get worse, and I was told I should no longer drive. It felt like my independence had been ripped away from me, and I was devastated. While going to school and working full time as a daycare teacher, I dated and then married my now ex-husband. We had been married for almost 6 years when he informed me he no longer wanted the life we had created. With our 4-month-old daughter in my arms and my incredible family standing behind me, I picked up the pieces of a broken family, and never looked back.
Today, when I look at where I am in life, I am unbelievably proud. The challenges I’ve encountered have led me to who I’ve become as an individual and continue to create a path to an extremely bright future. I have the privilege of spreading hope to thousands of followers and have been given a platform to advocate awareness on a scale much larger than I had ever imagined possible. I have a beautiful 2-year-old daughter who is my world, am in an incredible relationship with a man who understands and respects me on every level imaginable, and I am blessed to teach English as a second language to hundreds of international students.
This spring, I plan on returning to school to obtain my master’s degree in family counseling. There truly is no stopping a determined mind. RP is (for the most part) an invisible disability. Just because I am not wearing frumpy clothes, dark sunglasses, strutting my stuff with a hunchback walk while holding a white cane, doesn’t mean I’m not visually impaired or legally blind. A popular misconception is you can only use a seeing-eye cane if you are completely blind. This is simply not true. Next time you see a visually impaired person with a white cane who happens to be using their phone, think twice before you make a snarky comment or snap judgment.
The phrase, ‘You sure don’t look blind,’ gets old. What should I look like to you? What look would make my story more believable? I think I speak for many visually impaired people when I say this: Society and the standards that have been set over visual impairments and blindness can honestly be more upsetting than the disease itself. When I use my white cane, I am not faking it. I am letting you know I can’t see well, if at all. Unless you want me to run into you full-force, I would suggest you move. Not because I’m an as*hole and feel like I own the cheese aisle, but because I simply don’t see you.
The reality is you don’t know my story, and I don’t know yours. But maybe if we get to know people not solely based on what we see with our eyes, we could find it in our hearts to love everyone for who they truly are. Be kind. Always.”
This story was submitted to Love What Matters by Katey Ann from Boise, Idaho. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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