Telling the story of my life in my home - Fort McMurray, Alberta.

Tuesday, December 1, 2015

Close Your Left Eye

 Close your left eye.

Now keep it closed for a minute.

An hour.

A day.

A week.

A month.

A year.

Sixteen years.

Now you are me.

Sixteen years ago I developed the first signs of the chronic eye disease that has led to a cascade of complications, including scarring of my cornea, glaucoma, and a corneal perforation. I have undergone countless tests, had several frightening and painful medical exams and procedures, dealt with daily medications (both topical and oral), and seen numerous specialists in the field of ophthalmology - retinal, corneal, glaucoma and more.

And for the last sixteen years I have been functionally blind in my left eye, although for the last 14 months quite completely blind due to the medical grade cyanoacrylate glue (aka "crazy glue") used to plug the hole in my cornea and obscuring my vision entirely. I am now considering a corneal transplant in the next year or so (as my current "eye guy" says we can just keep putting crazy glue in my eye, or we can "go big or go home" and try for some actual vision through a cornea that once belonged to someone else).

That I will ever see again from my left eye is, at best, uncertain. And it is a reality I have been trying quite hard to deny for some time.

About 2 weeks ago I received an invitation to attend a session being held here by representatives of CNIB, the non-profit organization that seeks to provide support to persons living with vision loss. I was hesitant to respond to it, not even RSVPing as I was unsure I would attend, coming up with so many reasons not to go.

Work. Being tired. Just not believing it was necessary,

But lurking was the real reason, of course. Hidden away, even from myself, was my reluctance to identify as someone with vision loss.

I have written about my eye disease before, but always in the most cavalier of fashion, if truth be told:

Hey, I might be blind in one eye, but the other one still works! 

Hey, it could be temporary and after a corneal transplant I might have normal vision! 

Hey, so what if my depth perception kind of sucks and people who sneak up on me on the left side can startle me as I have no idea they are there until they enter the peripheral vision of my right eye! 

Hey, so what if my eye is often red, frequently sore, tearful in bright lights and looks completely weird due to the spot of crazy glue you can clearly see! 

Hey, so what if my balance kind of sucks and even walking on uneven pavement is kind of scary because there is a real chance I could fall because I can't detect the difference in depths!

Hey, so what if the glue could pop out and my cornea perforate again, leading to another urgent trip to Edmonton to shove glue in my eye while I lie on a gurney in a cold operating room and am completely awake while they poke at my eye with needles and the freezing that should eliminate the pain doesn't always work!

Hey, these constant trips to Edmonton are no big deal, waiting in "the big chair" to see my corneal specialist to determine if the glue is still holding or if the eye pressure has skyrocketed or if I should begin thinking seriously about what a corneal transplant will mean (lengthy recovery time, time off work, inability to drive, months of frequent rechecks, chances of rejection, risks of surgery) because it has now become an EMERGENCY and I need am immediate transplant to save my eye at all! 

And really, a corneal transplant is NO BIG DEAL, amIright?!?

The lies we tell ourselves can be the most painful ones to recognize.  Last Thursday morning I went and met the very nice folks from CNIB Edmonton, and they were kind and respectful. I spoke to them and to the main presenter, a man who lives not only with significant vision loss but deafness, too.  It was a big step for me, because it pulled me out of the constant chatter of how this was all okay and no big deal and not a big part of my life and into finally acknowledging that the last sixteen years have been one helluva journey, and one I would not wish on anyone.

I am, currently and potentially forever, blind in my left eye. One of my greatest fears is something happening to my other eye, a fear I avoid even thinking about often. But last Wednesday night when I lay awake and thought about whether or not to attend the session with the CNIB I thought about that fear, and how losing all my vision would impact my life, And I thought a lot about my vow to never let fear rule my life ever again, a vow I made years ago but that neglected to consider an eye disease that would be permanent.

I am not alone. There are others in this community with vision loss, some who are seniors and some who are not. I worry about those in my life and this community who forgo frequent visits to the optometrist and who may have silent eye diseases they won't know about until it has already affected their vision. I want to learn more about CNIB and the services they offer to those with vision loss, because if my vision loss is permanent it seems perhaps I should be exploring what exists as support for people like me.

People like me, with vision loss. There. I said it, and maybe now it will seem real to me instead of something I prefer to gloss over as being unimportant.

Close your left eye. Now you are me. And even if you are me, or like me, a person with vision loss, it is going to be okay. I promise.


PS:  If reading this blog has ever meant something to you, then do me a favour: get your eyes checked annually. Even if that is the only "real" thing I can ever do for you, that is quite enough for me. Your vision is precious. Trust me on this one, if not on anything else. Now go call the optometrist.

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