IG: @hypokayla
Where are you from?
London U.K.
Where do you live now?
Tempe, Arizona
Tell me about yourself:
I’m a mother to 2 handsome young men, 25 and 21, as well as a grandmother. I love being with my kids and grandkids. I have 2 sisters and 1 brother. I’m the oldest. I have dogs and 2 cats, who I adore. My dog, Storm, keeps me company and makes me go out, whereas the cats are very lazy.
What's your EYE story?
When I was 14 months old I was diagnosed with retinoblastoma. The tumor was a fraction from my brain causing my left eye to be removed right away. All my life I’ve had an artificial eye, until 5 years ago when my eye socket collapsed due to the prosthetic being so heavy. They said my eyelid would just shut at about 6-7 pm every night and look very droopy like I’d had a stroke, so I had an operation to put in an orbital implant which never worked.
My body was rejecting it, and I was in terrible pain, so the implant was removed. They realized that a gland had dropped and maybe that was causing the pain. So I had another operation to sort out the gland, which ended up making the pain even worse. My eye socket was not healing and kept getting infected and inflamed. I needed another operation, however, they would not operate again until the pain was under control.
What has been the most challenging thing mentally?
The hardest part mentally is accepting that this is how I’m going look for the rest of my life. I’ve always had much confidence and never thought of myself as being different, until now. Since I cannot have an artificial eye, I have to wear a patch. I bling all my own patches and feel comfortable in them, but still don’t like looking in the mirror.
What has been the most challenging thing physically?
The hardest part physically is accepting how I look. I believe I am beautiful, but people can be very cruel. Finding these pages with people who have the same struggles as me is really helping. Also, It’s hard to admit I can’t go anywhere alone, as I only have 35% vision in my right eye.
Where are you now in your recovery?
I’m still in so much pain and can’t sleep for days. My brain and all across the left side of my face feel like I’m being smashed with a hammer. I’m on a lot of medication which has no effect due to my body becoming immune to them. My pain specialist said my brain has no pain threshold and is so severe that under no circumstances can they operate until my pain is balanced. I’m on 32 pain relief tablets a day. I’ve tried loads of CBD oils, acupuncture, massages, and hot compresses. I personally think my eye socket needs to be packed out with my own body fat and skin and maybe then the pain will stop, but they can’t do this yet.
All the years up until September 2016 I never had pain, I loved going to Moorfields, but now I hate it, as it hurts so much. I just wish the pain would stop. My independence is gone, I feel I am now a prisoner in my own home and feel no one understands, but I have faith it will get easier and I will get back to myself one day.
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