Where it all started…
Living with Keratoconus
It’s my first post y’all! I don’t want to sound like a dork, but I'm pretty ecstatic about this moment and quite nervous… I think I may need a drink or two before jumping into our first topic. If you haven’t already, be sure to head over to the “about the blog” tab or click on the link below which will give you a back story on the blog.
Hello World - Welcome to my Keratoconus World! I am honored that you’ve decided to explore this journey with me. I may not know you personally, but do know I appreciate you for taking the time out to explore the Keratoconus (KC) world.
Allow me to introduce myself once more; I’m Shakeila (aka Shaki or tequila) If later on, you decide to give me another nickname be sure to drop your suggestions into the comment section below - would love to hear what you come up with.
Background story:
For those who haven’t figured out my age; I’m 27 going on 28 on November 20, 2020. I was born and raised in St.Vincent then moved to Barbados at the age of eighteen and lived there for about eight years then moved to Trinidad which I hardly survived. Currently, I'm living on a beautifully secluded island within the Grenadines.
Yes, I know I moved quite a bit, and I am pretty sure I’ll be moving once more - the next move hopefully will be the last. The major goal is to live in a country where my doctor resides and/or have better access to proper health care and products.
About Keratoconus (KC)
Some of you may wonder “What is Keratoconus?”
According to the American Academy of Ophthalmology, “Keratoconus is when the cornea thins out and bulges like a cone. Changing the shape of the cornea brings light rays out of focus. As a result, your vision is blurry and distorted, making daily tasks like reading or driving difficult.” (https://www.aao.org/eye-health/diseases/what-is-keratoconus)
On the other hand, my definition of Keratoconus is the process of losing your sanity due to the loss of one’s eyesight. LOL! Just kidding - not really!
KC is a rare progressive disease that affects a person’s cornea (one or both). Studies show that it affects one out of ten thousand, which in other words means “we’re special.” As the disease progresses from the mild to advance stages the cornea becomes thinner and bulges out of the person’s eye. Researchers have said that people with KC cannot become blind - Yay! However, as their vision continues to deteriorate over time they could become disabled; meaning they’ll need assistance to get around both indoors and outdoors. .
I've been in the advanced stage for quite some years and living on my own. I am still not completely ready to go through with the corneal transplant and there are a number of reasons behind this decision which I'll get into in another post. It is indeed difficult to get around without my contact lenses and I do need assistance when going outdoors, but I still don’t ask for help. I see myself as being independent and find it difficult to put my life in someone else’s hands.
Therefore, since it’s just me I tend to keep my independent ass indoors. If I can’t put my contacts I don’t leave. Yeah, I do miss out on a lot of things, but it’s my way of coping/adjusting to the KC life.
My Diagnosis Story
There were no warning signs, no head’s up so that I was able to brace for the impact this disease was going to do for my life - how drastic my life was going to change.
Up until the age of 16 I had close to perfect vision. I was the one others would ask to read out something they were unable to see. The vast majority of my family wear glasses so when I realized it became more difficult for me to see during my lectures, identify familiar faces whilst roaming the street, I figured it was my time to follow suit.
I booked an appointment with a local optometrist (I wouldn’t disclose their name) and the doctor proceeded to do the regular checks and fitted me for a pair of glasses. At the end of the consultation she said two things:
“Your lenses are going to be thick.” - Okay! No problem, as long as I was able to see
Also, you may be getting Cataracts, but I am not too sure.
I remember leaving the doctor’s office that day in complete awe. With no idea what on earth Cataracts was (don’t judge me), yet having the doctor reassured me that there was nothing to worry about because I was young, it put me at ease.
Why shouldn’t I believe a doctor?! They’re to be trusted...right?!
Well, so I thought.
Fast Forward to two weeks after my first consultation, the time came to collect my first pair of glasses, and within me sprouted a feeling of relief. Knowing that within a few hours I would’ve been able to see the world at its true form again. During the two weeks wait process, I asked everyone I knew who wore glasses what the first time was like;
would I feel weird afterward?
Would I walk weird?
….It’s funny how those questions almost sound similar to being asked what it’s like to lose..… nevermind! Lol! I can’t stray from the topic.
I got to the doctor’s office eagerly waiting for them to present to me my “newborn” which cost a pretty penny. Finally, presented to me on a silver platter with the black case beside it were my glasses. My initial thought was
“Damn! Those are some thick ass lenses.”.
Momentarily, I thanked God for the little beauty he had blessed me with because those glasses lenses, whew chiilee!
My hands carefully reached towards the glasses and slipped them onto my oval face. Trying my best to savor the moment, I shut my eyes tightly whilst placing them on my face - talk about the dramatics. It was time - the moment of truth; I slowly opened up my little brown eyes and saw... nothing. I blinked a couple of times, but no improvement. It actually seemed as though my vision worsened with them.
The assistant asked me if I was able to read the “ Open/ Closed” sign hanging on the front of the frosted door which was about four feet away from where I was.
“No, I can’t,” I replied.
She took the glasses off, cleaned them and placed them back onto my face, then proceeded to repeat the question and I repeated my response;
“No, I still can’t,”
There was honestly no improvement. She grew a bit annoyed at me not being able to make out the sign. She huffed and puffed, soon she would’ve blown me away with all her frustration.
She paused for a few minutes then told me to squint. I looked up at her and wondered if she was being serious. Nervously I looked back at the sign, then squinted. She asked once more,
“Can you see anything now?”
“Kinda.,” I replied.
Before I was able to finish the “Ah” sound, she replied,
“Okay, great it’ll improve with time … have a good day bye, bye!” rushing me out of the office.
There I stood outside of the office baffled. Unsure as what had occurred, and like a lost abandoned pup. I looked around the street and everything was a blur. Still, I stayed positive; maybe this was all normal. This was probably what my friends spoke about when they said: “it would feel weird at first.” Maybe weird meant blurry. So, I thought.
I managed to maneuver through the city and safely got to my mother’s office. Not even my mother was able to recognize me with those glasses on. I almost made her trip over some stares while she wondered who was this individual who she thought had a similar resemblance to her daughter but with beanie little eyes.
It was insane you guys. I wore the glasses for an hour, I began developing a headache. It was not until my sister saw me and asked me how I was feeling. I explained to her I couldn’t see well, and she was baffled by that and asked me to read out a label on a promotional bag. When I told her I was unable to see it, she was livid. She took the glasses off, my eyes were swollen and she called the doctor and gave them a piece of her mind. She went in on them!
We were going to sue, but the doctor was a friend of a friend and they asked for us not to. I was hurt because I trusted the doctor. I wanted help and I thought she would’ve at least cared about my well-being but I figure the money was more important.
Not only was I back at square one, but I also began questioning my local health care, and who else have they done such a thing too?!
A week after that catastrophe, the doctor telephoned me and explained, that they read my findings incorrectly, I had something called Keratoconus and they can fly in a doctor from another country to check my eyes. During that telephone call, I felt a number of emotions, but the one that stood out was disappointment that a ‘trained’ professional will handle someone like that. I declined the offer and sought help from another optometrist.
This guy confirmed that I did indeed have Keratoconus, and he explained that he did not have a lot of knowledge on the condition, therefore, he referred me to someone in Barbados who was more knowledgable. His honesty was greatly appreciated because he could’ve done the same thing the previous doctor did.
Luckily I was able to get an appointment shortly after meeting with the male doctor. I flew over to Barbados with my Mother and the doctor fitting me for RGP lenses, which I will talk more about in my next post. Click “Contact lens journey I” for more.
Stay safe Luvs! x
