In my six years as a stroke survivor I’ve undergone pretty invasive things to attempt to “normalise” my appearance and vision – my view of the world.

My eyesight was great for 23 years and then I had a stroke. Suddenly, I had double vision, nystagmus (flickering), blurriness and no sensation. My world was tilted.

Initially I blocked out my double vision with an eye patch. Visitors would say, “Em, all you need is a parrot on your shoulder” to try and cheer me up.

However, a year later, I wore stuck-on prism glasses – a venetian blind look. I then had my first pair of “coke bottle –plus” glasses. These were so thick that they were not only embarrassing to wear but the weight of them hurt my nose. Subsequently I resorted to putting up with a double view of the world. Then the Ophthalmologist suggested eye surgery, whereby they would cut the muscles around my right eye and rotate it. Whilst it had great results, the procedure wasn’t very successful with me – the surgeon over correcting the horizontal double vision, causing double vision in the vertical plane (so rather than your second head on your shoulder, it’s now on the top of your head). Whilst this boo-boo was  positives for everyone I looked at, as they were now taller and thinner, it meant that my brain had to suddenly adapt again to my new realm. It was a good thing as I purchased my first thin pair of glasses.

However, as since my stroke I have permanent damage to my fifth cranial nerve I no longer have sensation and am unable to completely close my eye – so am prone to eye infections, my eye drying out and ulcers. So after several years of a regime of eye patches, gel, sticking my eyelid closed with tape, I had further surgery. This procedure involved sewing a gold pellet inside underneath my right eye-lid, thus not only adding worth to my body value, it made my eye-lid heavy and easier to close. For two years, my daily eye gel application and the addition of the gold has meant that my visual acuity is pretty good. However, recently my vision has become worse. I ignored it for a while, to busy to acknowledge it’s decline but today after visiting my Ophthalmologist I hear exactly what I didn’t want to hear – she highly recommended a lateral tarsorraphy

“What’s that?” you ask

Basically it’s a fancy name for a procedure whereby they stitch your eye closed to preserve your cornea.  This procedure has been mentioned several times as an ‘end point’ means but I have done everything in my power to avoid it. I’ve even taped my eye shut, glad wrapped my eye to keep it moist and been open to my Ophthalmologist’s suggestion to “super gluing my eye shut”

“Can’t they just put a fake eye ball in” My sister queries.

I asked my Ophthalmologist the same question. Aesthetically it’d be better, but as I have nerve damage, it’s not feasible.

So, I’m off to a surgeon now this Friday to hear his view and ascertain if he has any other options. I know I sound vain, but I’ve done so much to improve the symmetry in my face and now feel I have to sacrifice looks for long-term function.

But it shouldn’t matter should it? Why do I care? I’m used to points and stares. Stranger’s inappropriate comments are now part of my day.

I guess I thought that as a stroke survivor, things would slowly improve. However, my condition’s chronic and at 30 years of age is still tough. I’m facing things now that I thought I’d hurdle in my 80s. . I wonder whether more eye gel, glad wrapping it better and not even undergoing eye surgery would’ve helped. Perhaps never undergoing eye surgery would’ve been better. However, I know deep down that I have to choose my situation and learn from my past, in order to move forward.

“Look at the positives Em… you’ll have the blokes in the street lining up thinking that you’re winking at them” My sister says, I can hear her grin.

I try and see the positives too. My first attempt is replying to my future sky diving partner bro – in-law ‘thinking of you phone message’. I text, “Sky diving will be less scary if my eye’s permanently closed”. I grin a little.

Hard to see sometimes, but there’s always a positive in difficult phases in our lives. Sometimes, we just need others around us to point these out.

So, enough about my vision, are you dealing with something tough? How can we accept what we can’t change and change what we can?