Cameron

I was 28 years old when, over a period of four days, my eyes spontaneously deteriorated, becoming gritty and bloodshot. At the time, I was more than five years into writing a travel memoir about a teaching internship in rural western Kenya that I had been offered through my university. The experience had been a highlight of my life, and putting it down into words was my all-consuming passion. I devoted every spare moment to writing, often putting twelve hours into the project from one day to the next. 

It was easy to dismiss my growing eye discomfort as the result of excessive computer time. I pressed on with my book, only mildly concerned by the increasing eye irritation that left my vision strained, my conjunctiva streaked with angry red. When I at last finished typing the final word, I decided to give my eyes a much-needed reprieve from digital screens. 

Instead of improving, my eyes continued to worsen. I began to seek the advice of various optometrists and ophthalmologists. They informed me that my ocular surface was dry as my meibomian glands were not producing adequate oil to hold my delicate tear film in place. My tears were evaporating as quickly as my eyes could produce them. I was told this condition was but a minor nuisance and easily treated with artificial tears and hot compresses. Months passed, and again, instead of improving, my eyes only worsened. 

Growing increasingly concerned, I set out determined to find answers as to why this was happening. I visited yet more dry eye specialists for third and fourth opinions and spent hundreds on various pharmaceutical drops, procedures, medications and products that failed to do anything but deplete my bank account. I had my tear ducts plugged and later cauterized to retain moisture on the parched surface of my eyes. When these methods only produced marginal benefits, I widened my search for answers, visiting naturopaths and acupuncturists and spending hundreds more on supplements and intensive dietary protocols. 

As the first year gave way to the second, my eye condition began to morph. Not only were my eyes gritty and bloodshot but they now ached and burned incessantly. The glare of artificial light in a convenience store left me wincing, as did the gentlest breeze. I found that I could no longer stand to have my eyes uncovered and was forced to don goggles day and night to reduce my exposure to moving air. My discomfort was also beginning to progress into outright pain, a deep unrelenting ache that radiated out from my corneas into my forehead and jaw. The pain would wake me in the middle of the night and was often so severe that I would retch and vomit. Dark bruises formed under my eyes, and I began to shed weight as the pain in my eyes deprived me of an appetite. First ten pounds, then twenty and finally thirty. I became skeletal in appearance and, for the first time, I seriously questioned whether life was worth continuing with in this beleaguered state. Few in my circle understood or could relate to what I was going through. I felt uncomfortable burdening those around me with the reality of my circumstances, so I stepped back into a reluctant isolation. 

My unraveling became a hidden spectacle of desperate endurance and daily pain management. Though I did my utmost to grit my teeth and push through my discomfort, my condition would not accommodate my persistence. Everyday activities that I had once taken for granted--innocuous things like watching a film or going to the grocery store--became daunting and near impossible. With my eyes hypersensitive to every fluctuation in temperature, humidity and lighting, pushing myself too strenuously simply caused my eyes to flare. The pain would then leave me bed-bound for days with a rotating arsenal of ice packs.

As my ability to work and socialize gradually vanished, those I still counted among my friends withdrew into their own full lives. The invitations and calls ceased and my life shrank to the size of my bedroom. I was forced to rely entirely on my family for financial support, as my inability to work left me at a real risk of homelessness. And all the while I endured this forced hermitage, I waited on one clinician referral and then the next. Few had insights to offer. Eventually, after living more than two years with this bewildering condition, I received the diagnosis of corneal neuralgia. 

Having a concrete diagnosis is certainly comforting, but ultimately it doesn't do much to change the reality of living with this condition. It is still my daily preoccupation. I have made improvements since I received my diagnosis and began treating my ocular surface disease. That said, every day remains a challenge, both physically and mentally. I have always been industrious and goal-oriented, and it is frustrating to be strong-armed into lassitude by my condition. I try to have hope for the future, but it is incredibly difficult to grapple with the reality that I may never realize my full potential or enjoy community and relationships in a healthy and normal way. I was once an avid traveler but those days may very well be behind me. I love to write and see it as my calling, but finding the wherewithal to put pen to paper and create through a fog of pain is a challenge. 

I choose to have faith that my life has purpose and that it's possible to use even the most negative experiences as a source of perspective and transformation. I pray daily that healing comes, and it is now also my express hope that my story helps to inspire our healthcare leaders into providing adequate resources to those who are suffering from ocular surface diseases.