I Have Keratoconus, An Incurable Eye Disease, And Here's What I Want Everyone To Know About It

I Have Keratoconus, An Incurable Eye Disease, And Here's What I Want Everyone To Know About It

I go through the motions and try to seem normal and that's difficult...


Life is such a tragic thing, isn't it? Tragic in the way of being so great that you seem high on life. But, tragic in the way that certain things will happen that are completely out of your control.

No, I do not have a disease that I will eventually die from and I am not trying to compare myself to those of have a terminal illness. I wouldn't dare compare my life to someone else who has to question whether they will see the next day. The disease that I have has no cure and at the moment there is no clear cut way to treat it either.

This is my time with it and how I live with it.

When I was in third grade I needed glasses which I thought was normal, my mom, great-grandparents, grandpa, and grandma all wore glasses. I figured I was just like them, they were awesome and being like them was obviously a thing I wanted. Going to the eye appointments was no big deal at that time, I loved looking at the colorful lens and frames trying to see which ones would make me look the coolest.

I can't remember how many times my mom had to tell me that if I break them she would be pissed, basically, my glasses were my life and my first big responsibility. I wasn't called four eyes or anything of that nature to all my other classmates it was also normal to them. I don't remember who, but there were a couple of others that needed to wear them as well, we just the cool kids.

Fast forwarding to when I was just entering my second or third year of college, I was about 21 years old. That's usually the time when you really start living and becoming a true adult, but man was my experience different. My vision was so blurry even with the glasses, I'll tell you the truth with my glasses I was barely able to see my hand.

It wasn't until I had to get my driver's license renewed that I got my eyes checked again. I went to see my usual eye doctor I wish I could remember her name, but I'm sure it will come to me by the end of this article. She noticed something and told me that I had keratoconus.

There's no cure, it's very rare there are fewer than 200,000 cases per year in the United States. In a nutshell, my corneas shape into a cone causing permanent damage to my eyes. Yeah, a great way to start off being 21 right? My vision was so bad that she couldn't make me a new pair of glasses.

So, I guess you're wondering how I live with something with no cure, very little research, and no one to relate to that has the same thing I do. I go through the motions and try to seem normal and that's difficult, but thank god for contact lenses, right?

I can still do all the things that I love to do and communicate the way normal people do, but there are times when if I don't make complete eye contact with you, I'm still listening just a tip if you ever meet me.

Honestly the loneliest I've ever felt. Sure, I've gone through breakups, I've had pets die, and have lost some friends. But, knowing that this disease will always be a part of my life is devastating.

Am I going to go blind? Will I ever be able to see my friends and family members faces again? What do I do? Those were just the thoughts that I had throughout the last couple of years. It is so tough and honestly had some very dark thoughts in my head, ones that aren't needed to be shared in this piece but you get the point.

This is no sob story and I don't want anyone to feel sorry for me, this is simply my narrative of what went down and what I have gone through. I felt so lonely and very sad, but where is that going to get me? I had to go deep within myself and tell myself that no matter how hard it gets, you can't give up.

Life will never be normal and I won't get to see the world the way my friends do with perfect vision. I know one thing is for sure, I will continue to live my life and never get down again. Hopefully, someone with this disease will stumble upon this article and find out that you aren't alone. I was in that place before, it's scary but you can't give up.

I have keratoconus, but that will never stop me from living.

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I Think I Have Telephone Phobia And It's Serious

While a lot of people commonly fear clowns, darkness, and heights, I fear phone calls.


Is it just me or does anyone else dread having to make and pick up phone calls? Am I also the only one who gets really sweaty and goosebumps everywhere whenever the dial tone sounds? I hope it's not just me. Maybe it's the idea of a disembodied voice over the speaker that scares me or maybe it could just be me being socially awkward for no reason.

Who knows? But I do know that whenever I have to make a phone call, I have to prepare ahead of time, and if you actually see me do it (which I won't let you), you would see that it's an extremely daunting process. First, I type out what I want to say and the questions that I want to ask on my laptop. Sometimes, if it's an important phone call, such as to a place that's hiring or looking for potential interns, I prepare multiple sets of responses in case the conversation doesn't go as planned. Then, I read what I wrote two or three times out loud to myself and correct whatever doesn't sound right because you know, things usually sound better in my head.

I rehearse the finalized version another two or three times, and after that, I muster up all of the courage that I possibly can and force myself to dial the number. Finally, when the person picks up, I do my best to read off of my script, even though it's staring at me straight in the face, and try my best not to sound like a robot. Did I also mention that, when I can, I lock myself in a room so that nobody can hear me? Well, I do that, too.

This is exactly why I avoid receptionist jobs. I don't like having to call someone that I don't know because I tend to stutter a lot when the person on the other end picks up, and it's hard to predict how those phone calls will go, so I can't really prepare for them as I would do at home. Usually, I'm afraid that I won't know how to respond to the callers' questions, and I don't want them to know that I don't know how to answer them, but I also don't want to put them on hold and take up their time.

It's especially bad when an office is so quiet that everyone can practically hear all of the "ums" and "uhs" that come after every word I say. This makes me even more self-conscious about the sound of my voice, and I often say to myself, "Is this really what I sound like?" It's basically just an endless cycle of trepidation. Another thing that gets me is the instantaneity of phone calls. It's not like texting or emailing where you can choose not to respond right away. You could even leave the person on delivered or read if you really wanted to, but you can't do the same when talking on the phone unless you hang up on them, which won't be good for either of you.

Isn't it ironic how the phone was invented so that people could communicate by calling, and yet, I don't use it for that purpose? I tell my friends not to call me because I tend to respond better on Messenger or iMessage because I have time to think over my response. If it's an emergency, then I'll make an exception, but otherwise, I try to avoid phone calls at all costs. My parents are probably the only other exception because they're my parents, and both of them say that they'll take forever to respond by texts, so I really have no choice.

In all honesty, I prefer anything but a phone call. You could send me hundreds of postcards, letters, and emails or even spam my Instagram, Facebook, and Snapchat. You could even write a message on a paper airplane and throw it to me. I don't care, but just don't call me. Will I ever get over this? I should, but I probably won't, which sucks, but I'll manage. I think.

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