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My House of Pain

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My House of Pain

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MaryC_Deveau2

For me, life is facing challenges head on with fierce determination, giving it your all, working through physical and emotional pain with a smile on your face.

But for the last six years, I have had to face a new challenge that at times has pushed me to my limit and has challenged me to keep smiling. My struggle is with life-changing corneal pain.

It started out of the blue. My eyes began feeling gritty and scratchy then grew to the point that pain was across my forehead, cheeks and jaw. My vision worsened to the point where I could no longer focus or read for long. Any trip outdoors meant wearing dark sunglasses and wide-brimmed hats. Driving was uncomfortable with the sun and glare making it hard to keep my eyes open, let alone focus on the road ahead. Night time driving was impossible.

I tried many eye drops, bought new sunglasses and starting blaming my eye damage on computer overuse, and myself. “Severe dry eye,” my optometrist said and sent me to a specialist. Tests were done. There was no evidence to support dry eye. My eyes were producing plenty of tears. With his back turned to me, with no compassion whatsoever, he asked if I had considered seeing a psychiatrist. But I knew I didn`t need counselling. What I needed was for my pain to be taken seriously. Trips to several other specialists resulted in the same words.

I soldiered on. Work suffered. As the owner of a publishing company, everything I did was on the computer: editing, accounting, communicating with correspondents. The light from the computer screen intensified the already shooting pains across my forehead, cheekbones and jaw, leaving me struggling to finish projects. Publications would be put to bed then I would crawl in bed myself. Finally, in pain, frustrated and disappointed, I was forced to close the business.

Facing pain day after day, losing your ability to do things you love. Those things are hard enough. But not knowing what is wrong with you, having people question your sanity and feeling like you are alone, can be the breaking point. You wonder where you will turn next when you are slowly running out of options.

When I learned about Dr. Perry Rosenthal’s work, through determination, I made it to Boston where Dr. Rosenthal examined my eyes and diagnosed me with having corneal neuralgia.

Undaunted by the challenges of diagnosing my eyes, Dr. Rosenthal began from a position of belief, compassion and understanding. Years of misdiagnosis and pain dissolved in an instant. He explained what was wrong with me, and assured me I was not crazy. The pain I was feeling was very real. He explained that the cornea is the most powerful pain generator in the human body, 200 times more powerful than skin. No wonder I was in pain.

Cornea neuralgia is a relatively new term in the medical community. Dr. Rosenthal’s mission is to create greater understanding of this often misdiagnosed disease and spread the word to patients, doctors, family and friends of those who suffer its devastating effects.

My photosensitivity has now reached the point where I remain mostly trapped within the walls of my home, seeking refuge in the darkest rooms. Even inside, behind windows covered with blinds and towels with sunglasses covering my eyes, the pain is unrelenting. If you could see my pain, you would see chards of glass sticking out of my eyes with dripping blood slowly running down my cheeks. And that`s just the eye pain. The head pain is like a vice wrapping around, pressing down, never letting go. I gave birth twice with no pain medication whatsoever. Birthing pain doesn’t even come close to this. Many pain medications I have tried have terrible side effects while others are ineffective if used too often. I have what I call only a few hours of “eye time” daily. I ration them out like a prisoner on bread and water.

The pain of corneal neuralgia has caused me to say good-bye to many things I once loved. Drawing kept me going when I was a stay-at-home mom so I tried it again. My first attempts ended in frustration. I couldn’t see the detail. Magnifiers helped some. Then one day, I enlarged the image and it worked! I could do it!

Not only could I draw again but I had developed my own special “close up” style. Instead of drawing a bouquet of flowers, I would draw one. Instead of drawing the whole dog, I would draw his face. I discovered something amazing. When I drew, I lost myself so that for the first time in many years, the pain was not the thing foremost in my mind.

tiger2If the eyes are the windows to the soul, then it seems appropriate, ironic even, that when I draw, it`s all about the eyes. Of all my drawings, this tiger speaks to me most. His eyes say, “I am fierce. I am strong. I will survive.” Tigers prefer to stay out of sight and hunt at night when it is dark. They fight when they must. I am a tiger. I thrive at night after the sun has set. When pushed to my limit, I fight.

I would urge other corneal neuralgia sufferers to be tigers. Be fierce. Be strong. Know that you are not alone in the darkest dark of the night. Try to embrace what you still can do, how insignificant you believe it to be. Perhaps something you find will allow you to lose yourself and not focus on the pain, if only for a minute. May Dr. Rosenthal’s work lead to new efforts within the medical community to bring about a cure for corneal neuralgia.

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