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When being blind becomes a part of your reality: Living With Keratoconus

See someone asked me where I’m going and all I had to say was I was heading into the ass.

For the past few years my friends and I always shared blind jokes and how bad my sight was, was always something we could laugh about. But for the past few months I’ve watched the world around me slip further and further away, slowly turning into a blur.

Being behind the camera is a solace, except I’ve watched the lens start to lose focus. I’ve lost writing to the unbearable glim of my laptop and even being outside is starting to feel like I’m cutting through to my own soul.

Keratoconus

‘Keratoconus is a bilateral (both eyes) degenerative condition of the cornea, a transparent dome-shaped tissue that forms the front part of the eye. Keratoconus gradually causes the cornea to thin, bulge/protrude outward, and become cone-shaped. This creates an abnormal curvature of the eye called astigmatism. Symptoms may include blurred vision and seeing multiple images, glare, halos or light sensitivity (photophobia).

People with keratoconus typically begin to exhibit symptoms in their teens, and the disease gradually progresses over time. In the later stages, scarring can develop in the area of the corneal bulge or protrusion, which can further impede vision.

Occasionally, people with keratoconus can develop hydrops, which is a sudden break in the internal surface of the cornea that allows fluid to enter the cornea and cause it to swell. This can cause pain and a sudden decrease in vision.’

When I was young I couldn’t bare to watch tv under the light which meant spending a lot of time in my room sitting in the darkness alone. My family often called it being anti-social but they couldn’t sit without the light on so anti-social is what I had.

To normal people it’s just a light, to me it’s like your pushing a flood gate of pain straight to my brain and then comes the headaches. Since I was 16 I was always greeted intense summer migraines that have gotten more and more intense with time. 

See I tried to explain it, the pain it caused but that’s the thing about perception for those blessed to see is you can only ever see from a position of privilege. 

Also in an African family as a kid you almost never know what you’re talking about even when it comes to your own body. Which is something that I still find sad to say is still true as a young woman but that’s another story all together

(Ps: Parents don’t ignore your children’s pain, sometimes they know what they’re talking about. Their Body should be Their Choice)

For years I was greeted with the, ‘why don’t you just wear glasses’ conundrum. See the thing is I tried but glasses only cause me more headaches and dizziness. Which is something I could explain the time I was 15 because the reality is glasses and regular contact lenses don’t help with the corneal irregularities caused keratoconus. But it didn’t stop people from telling me that glasses would make it all better. Hell im 23 now and I still get the exact same remark almost every other day but seriously people IT DOESNT HELP. 

In order for me to actually be able to see, I need to do a procedure called cross linking which will ensure that the disease does not keep progressing ie) the world doesn’t keep getting blurry until well I can’t see anything. Then get scleral lenses —‘large-diameter, rigid gas-permeable contact lenses that are filled with sterile saline solution. While regular contact lenses touch the cornea, these special lenses rest on the sclera, the white part of the eye beyond the cornea. The saline solution fills in and corrects for corneal irregularities, creating a smoother optical surface and better vision.’

If this doesn’t work or if the disease has progressed too much then they will need to do a corneal transplant. A cornea transplant (keratoplasty) is a surgical procedure to replace part of your cornea with corneal tissue from a donor. Your cornea is the transparent, dome-shaped surface of your eye that accounts for a large part of your eye’s focusing power.

Living with Keratoconus has meant days where I can’t work because the light in my office is too bright and my head is too painful. It’s meant not being to read for long under any sort of light and therefore not being able to concentrate.

For the Past few months it’s meant not being able to stand behind the camera because everything is turning into one big blur. It’s meant walking home feeling dizzy and light headed because the sun has been in my face for one second too long. 

It’s meant watching my vision degrade every few months. Watching things that were once clear turn into more and more of a blur. Not being able to read my favorite books. Sometimes missing out on the conversation because someone started the sentence with ‘oh look.’

It’s meant having tons of awkward do you remember me conversations and why didn’t you greet me conversations when honestly, 1) I didn’t see you like literally I didn’t see you. 2) I didn’t recognize your face because again I’m not mean or vain or rude, I can’t see!

It’s meant not hanging out with friends much because I don’t want to be outside for too long and sometimes the lights are just too bright for me to stay and lying down in the dark is the only thing that feels good.

It’s been making jokes and pretending to be okay because even though I’m scared, I still have to work and try to have a normal life.

See I’m typing most of this with my right eye closed cause that’s the only way I can bare to see better even a little. I’m typing all this faced with the reality of continuing to lose my vision until there’s nothing left but the blur. 

Why?

Because see people are different and even with eye conditions, there’s not only short and long sighted there’s a whole host of conditions.

Because I’m blind isn’t just a mere joke anymore, it’s starting to feel like a looming reality. 

So get your eyes tested and screened. Find out how to take good care of your vision. Test your kids the time they are 10 so if anything is wrong it can be caught early.

For now I’ll catch you on the other end of the ass

Ps: if anyone asks about my sight direct them here.

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5 Comments

  1. All shall be well,dont lose hope.God is amazing and work in mysterious ways.Tell it all to him in prayer,he will surely answer.

  2. Thank you for this. I am also living with keratoconus, and you were spot on. Don’t let it get you down though, i haven’t!

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