In November 2015 I shared my first story about my diagnosis keratoconus (Dear Keratoconus, This is how I feel about you.) I was so happy to receive so many responses from everyone who can relate to my story.
In February 2015 I stopped wearing scleral lenses.
January 2016: my doctor told me he was not going to perform cross linking. And a transplant was not an option, because I still needed to wear lenses. I had to wait for a 2nd opinion from a different hospital. Waiting list: 6 months...
In the meantime no lenses, no cross linking and no transplant.
20/200 and 20/400 with glare, halo's and double vision.
Great cocktail of vision!
When you Google keratoconus, you don't read about how keratoconus can affect your life. My first eye doctor who diagnosed me sent me to an optometrist. And that was it. Later I realized
my sight would depend on those lenses for the rest of my life to be able to see.
Nobody told me about the problems I was facing: lens intolerance, eye pain, not be able to drive your car no more, headaches, anxiety, consequences for your career and to explain yourself over and over and over and over again and people still don't get it. Yes, I'm legally blind. Yes, I can still see. I know the sun is not shining today. No, I didn't smoked weed. No, not a space cake either! Yes, I know it's legal in Holland. My eyes turn red and throw up if there is a lens in it. Period!
My boss told me he thought I was faking my condition even with all the reports from my doctors. He still didn't believe me. I couldn't do my work any more and with that he thought I was lying. I was lost and hurt. This was the hard reality of keratoconus. I should be winning an award for being legally blind and be able to hide it. People don't see how much I try to focus in order to see. Even if I focus, it's blurry and to make it nicer there is the shadow behind the letters.
It's not just about low vision. It's about losing control and misunderstanding. Losing control about your vision is tough. But losing control about your life and being judged and misunderstood was making me depressed. I didn't want to be the young single mother with a visual disability and depending on others or on the state. I wanted to hold on to my sight and run from the reality. How can you find yourself and accept who you are if you are disabled? Adapting to the situation was like I accepted my disability which made me feel like I failed.
However my name is Charlie and the loss of vision gave me an enormous drive to fight for my self-reliance. I'm human and I have a serious degenerative eye disease. I will not let me treat like shit just because people don't understand.
I started to work out in the gym. Lifting weights, yoga, abcore and cycle became the most important therapy to cope with my frustrations and anger towards the nasty bitch keratoconus. While there was no understanding from my work, the gym understood.
I found the keratoconus Facebook group. Wow, I was not alone! There are others who are facing the same issues. And I found hope, strength and faith. I met my keratoconus buddy on Facebook who supported me in every way across the ocean. My tower of strength. Sometimes the darkest nights created the brightest stars. I needed those lights to keep hope and deal with the insecurities that come with keratoconus.
Keratoconus took me to a whole other level in my life. keratoconus literally challenged me to live a life being disabled. And I had no choice but to take the challenge. I'm not there yet, but the ones who are close to me are worth gold. My family, friends and son.
And guess what...
After one year of talking with my keratoconus buddy, I took the plane by myself to see him. From Holland to USA without lenses. We finally had our first blind date!
My life has changed.
Yet, I'm forever grateful for the love that came on my path because of keratoconus.
Charlie Polak (Facebook)