Cynthia

I am writing to you today in the hopes of being heard and to convince you that our eye diseases are serious and deserve free health care.

I don't know how to go about it, I don't know what to say, I just know that I can't stand there and say nothing. I can't be afraid anymore. I can't wait for help anymore.

I've been waiting for 17 months now, suffering, physically, psychologically, scared, hoping for a helping hand. That I do everything in my power, although very limited, to get help and be heard.

A few days ago in the media there was a story about a 25-year-old young woman who committed suicide, despite having gone to seek help, which she was refused. This woman could have been me, every day, for 17 months. It could be me tonight. It could be me tomorrow. But I’m holding on. I'm holding on because I want to live, I want to achieve my dreams, and I don't want to hurt the two people I love the most in the world, my parents, who have also been fighting for 17 months by my side, but for whom resources are limited.

Living like this, if I can still call it living, I don't want to - I can't.

I’m clinging on, but I don't even know on to what anymore. I wake up every morning, and I feel like I’m collapsing. I have to open my eyes. Seeing hurts. Trying to understand what I see, or no longer see, hurts so much. My eyes, open or closed, hurt. My most precious sense has been completely destroyed. So I keep my eyes closed as long as possible, and I sleep as often as possible, as long as possible.

Is that living? Always looking forward to falling asleep, and hoping that tomorrow morning, we won't wake up again? Unfortunately, I am not entitled to medically-assisted death. So I have two options: end it myself, because I've been forced into a life I don't want anymore, or hang on.

But to hang on, I need help. And this help is refused to me.

I have always had absolute confidence in our healthcare system and in its doctors, despite the shortcomings. I always felt in good hands. I am fortunate to have had 3 family physicians since my childhood who were all amazing and dedicated women.

But something went wrong. I can only watch the walls fall because I can't hold them up on my own.

My professional life is falling apart. My married life is falling apart. My parents’ lives are falling apart. My social life is falling apart. My dreams are falling apart. My goals are falling apart. My finances are falling apart. My hopes are falling apart.

Here is the list of my struggles, which began the day after the LASIK operation, from the second I opened my eyes. If you do not know what I am describing, I invite you to take a moment and watch videos or photos illustrating these symptoms online, and I ask you to imagine yourself living with ALL of this at the same time, and having the medical system telling you that your symptoms are not worth being covered by provincial health insurance.

- Photophobia: Any source of light, natural or artificial, is extremely painful. Phone, computer or television screens burn my eyes and make my muscles contract so hard that my eyes close on their own. My house windows are completely boarded up with blackout blinds, I no longer go outside when it's sunny. I can no longer practice the outdoor sports that made me so happy, or even enjoy a car ride with the window open... I can no longer enjoy a good movie, or appreciate a TV show. I can no longer perform my professional tasks on my electronic tablet either.

- Eye dryness: My eyes are so dry that when I blink it feels like my own eyelids are sandpapering my cornea, sticking to my eyes instead of sliding and protecting them. The pain that ensues burns as if I had rubbed raw onions against my eyes. No drops, lubricating gels or medications relieve this sensation.

-Corneal neuralgia: During the operation, the nerves of my cornea were cut. The nerves are dead or the connections have never been remade. Corneal neuralgia pain is described as a feeling of knives in the eyes, foreign bodies, needle sticks, pressure around the eye as if someone was grabbing my eye, burning. We become inoperable. Medication in my case helps very little. Only in Boston do doctors have the right machine to see what percentage of the nerves in our eyes are dead. Colleagues made me a fundraiser to help me to be able to pay for an appointment with Dr. Hamrah in Boston. My friend Émilie made me a gofundme because she was outraged similar healthcare was not offered to me here, knowing in addition all the other complications from which I am affected.

- The heat, the wind, the cold, the smoke of a candle, a fire in my living room, performing household chores that require the use of cleaning products, putting on perfume, applying makeup; all that is no longer possible for me because my eyes are on fire.

- Entoptic phenomenon: There are white dots, leaving a white trail behind them, by the thousands in my field of vision.

- Palinopsia: vision disorder characterized by the abnormal persistence, or reappearance of images when no longer looking at them. I look at my sofa, then I look at my wall, and in front of my wall, I also see the sofa. The images overlap and distort each other. I have what is called ghost images, and also negative images.

- Oscillopsia: visual manifestations such as blurred or jumpy vision. It's an optical illusion of movement that makes a stationary object appear to move, to move back and forth incessantly and quickly, to shake, to distort, to jump... It's extremely dizzying and it makes what you're watching absolutely unbearable.

- Loss of peripheral vision: my eyes can no longer see and understand everything. Looking at a landscape, looking into the distance, looking at a large format screen, driving... all of this has become practically impossible for me...

- Floaters: Bodies of various shapes, ranging from small to very large, from translucent to black, wandering all over my vision. They are noticeable in any type of light, but absolutely constraining in daylight. I avoid going outside because they take over my entire vision...

- Loss of binocular vision and loss of focus: My two eyes no longer work together. My brain no longer connects. My eyesight is constantly shaking as she keeps switching from trying to switch from right eye to left eye. I can only look with one eye at a time. My focus is lost, making my job nearly impossible. I have the constant feeling that my eyes are trying to focus like an ill-adjusted camera, but they never do. I have never experienced anything so physically and psychologically exhausting...it's every second of my life...nonstop.

- Eye headaches, sore eyes: probably due to the focus that is constantly trying to get done, my muscles are constantly straining. I could compare this constant feeling to when you try to ''squint'' to look at your nose, the strong painful pulling sensation. And as it is non-stop, it hurts more as the day progresses. The inflammation builds and worsens until I can't stand having my eyes open any longer, and lock myself in the dark with heated masks to help myself fall asleep. The pain is sometimes so intense that it extends to the back of my head and into my jaw. I sometimes feel enormous intracranial pressure, and my blood pressure also increases.

- Blurry vision in the left eye that no glasses can correct. Contact lenses are also impossible since my cornea has been too deformed by lasik. I have absolutely no visual acuity in my left eye, which was my strongest eye before the operation. Keeping that eye open is horrible. I feel constant pressure on my cornea like someone is pressing it with their finger.

- Nyctalopia: I see absolutely NOTHING in low light conditions. I walk around my house with a headlamp in the evening and have had to buy lamps to add to all the rooms in my house. I can no longer do my job after 4 p.m. in winter. Walking outside in the evening, impossible, and at night, even more impossible. I've fallen down my stairs a few times, and gotten stuck in door frames and furniture hundreds of times.

- Loss of contrasts: I no longer see contrast. My black living room furniture, in front of my black sofa looks like one object. I no longer distinguish the furniture from the sofa. My work requires a perfect mastery of colours, so it plays against me a lot.

-Visual Snow Syndrome: Probably one of the worst symptoms anyone could live with...my vision is gray like an old cathode ray television. I have snow constantly in my eyes, it's constantly moving. Billions of tiny dots flickering, making the image my eyes see completely blurry.

-Halos/glares/starburst: Visual effects due to lights. I dared try to go see a comedy show yesterday, casually telling myself that there would be no light show and that maybe I could manage to have a good time. I finally attended this show with my eyes closed. Even that my eyes couldn't stand.

I think my list is coming to an end...

That's a lot... and I'd love to be able to tell you that I’ve exaggerated everything I've told you, but unfortunately no... that's what I have to put up with on a daily basis.

It is impossible, absolutely impossible, for me to live in this state. Having my eyes open is literally torture.

I would give anything in the world to go back in time and not have this operation which was supposed to be, as I was told at LasikMd, quick, easy and painless, and which was going to change my life.

It sure did change my life.

Our medical system must take responsibility. Give me access to the care I need, and do everything in your power to try to improve everything that this surgery took away from me.

I have no more resources, I have no more help, I have no more energy...

You are the only option I have left...

I sincerely thank you for taking the time to read my letter. I am well aware that it is long, and believe it or not I tried to cut corners trying to keep only what was really important, and I could say a thousand and one more things, but I believe that after all that, the main thing is said...

I ask you to use your knowledge, your judgment, your empathy, your humanity, to bring me the medical help that I cannot afford. To take into consideration that I am far from alone in going through this ordeal. Something has to change.

For once, let my words resonate somewhere...