As I Was Sleeping…
Contributed by Leann Gibson
Change Is A Part of Life
As a military wife, I am well versed. We await in the wings for the day we are advised when and where we will live. So as the summer of 2011 rolled around, we had to pack up our life and head out. Our new destination? Wainwright, Alberta where I was born and raised. Once settled, I decided I needed a change in career. As a professional chef, the opportunities were limited. I began working for Prairie Vision Centre as a Lab Technician, and enrolled in the Optometric Assistant course. How ironic that I would soon be facing permanent vision loss.
I remember sitting for a few moments on the edge of my bed, yawning and willing myself to wake up. As I began to rise, I knew something was wrong. Unable to put my finger on it, I blinked and rubbed my eyes as I attempted to steady myself. Was I just feeling dizzy? Was I getting sick? It didn’t matter; I needed to get to work. At the office, I was overwhelmed. Why were the lights SO much brighter today? These cloudy fragments circulated my visual field. I felt unsure of myself with every step. The faces of everyone around me were fractured making me unable to distinguish faces. Suddenly I was surrounded by strangers. My world had become lifeless overnight. In some cosmic game of chance, I happened to be in the right place at the right time. After the initial tests had been completed, it became apparent that what I was experiencing was out of the ordinary. A war was raging inside my head. My brain had the knowledge of how the world was to look, but my eyes were incapable of sending the information.
The next step would be a referral to a neuro-ophthalmologist. So many questions began to flood my brain as I carefully suppressed a full-blown panic attack. I was terrified. What was wrong with me? Around this time, I began developing photopsia or flashes of light in the lower portion of my peripheral vision. These “strobe” like flashes would eventually envelop my entire periphery, and would intensify depending on the amount of light. Daylight was becoming my enemy; the glare bled into this massive whiteout forcing me to close my eyes. Sunglasses made it possible for me to function in the outside world. In the coming months many tests followed: OCT scans, Electroretinograms (ERGs), Multifocal ERGs, Goldmann field tests, and Fluorescein Angiograms. Still no answers, however a neurological link causing the vision loss was ruled out. This was a momentous victory to say the least. What followed was an excruciating delay as I was thrown back into the referral pool.
Luckily, two of the most sought after ophthalmologists in Edmonton would continue my care. A couple different conditions began to surface in their minds: Macular Dystrophy and Autoimmune Retinopathy, a spectrum of rare autoimmune diseases that primarily affect retinal photoreceptor function. To identify the autoimmune condition, I would need to have specialized blood work done. I was given two options: have the test completed at home or have it done at the National Eye Institute in Bethesda, Maryland. There I would be given the opportunity to consult multiple ophthalmologists specializing in a variety of eye-related diseases.
I should mention in the middle of all this, we received word that we would be moving again. On the bright side, the city of Edmonton was only two hours away. Considering how many medical appointments I was racking up these days, relocating to where my doctors were would make things easier. So many changes in such a short period of time was starting to take its toll. I was beginning to sink lower than I had ever been in my life.
With my passport in hand and my father by my side, we began the journey to Bethesda, Maryland. What a privilege to experience this one of a kind research facility. Unfortunately, the question remained unanswered. They simply didn’t know. My heart sunk into my shoes. All the hope I had built up rushed out of me until I felt numb. This intruder had savagely taken custody of my life. It should have taken six weeks to get my blood tests back. However, a series of events that were beyond my control delayed the results for four months.
I received a phone call on February 10, 2014 with the results. I had a rare condition called Autoimmune Retinopathy (AIR), my immune system was creating autoantibodies that were attacking and destroying photoreceptors in my retina. In some cases, this disease is related to certain forms of cancer. For some, cancer shows up alongside or after vision loss; for others not at all. The only real way to determine which type I have will be by process of elimination and to screen yearly in the hope of catching any malignancy early enough to be treatable. The world around me fell silent. Time ceased and everything just melted away. Eventually, I became aware my name was being called through the phone. As my mind sputtered to life, my fears became reality.
As the days fused into weeks, and weeks weaved into months, time started to pass without me realizing. I felt a million miles away from everyone, tiny and alone. No one understood. Sure everyone felt sorry for me, but that is not the same thing. In a way, I felt ashamed and weak for allowing this to get the better of me. Smile when your sad inside, that way no one can tell you are ready to give in. I obsessed over what I could no longer see, hopelessly caught between looking to the past and fearing the future.
My darkest prayers were of going to sleep and never waking up. Launching into a kind of self-induced torment, I became an expert in making myself feel bad. Still, my stubborn nature reasoned within my mind, was I really going to allow this to be my life? In a moment of clarity urged on by a quote I read, the choice was laid out for me. It said, “What you allow is what will continue.” I could continue following the path I was on or forge a new one. I alone was responsible for how my life played out. First, giving myself permission to mourn my loss of vision allowed me to take ownership of my pain. Then I began reaching out, joining a few Visually Impaired and Blind groups on Facebook. I started interacting with people who understood what I was going through and a whole new world opened up. A sense of peace washed over me. The only way to hold on to that feeling was to make positivity a priority in my life. By making a conscious choice to extract the good from the bad, all that is left becomes powerless. One of the hardest parts is how my husband has become this faceless stranger. But when I move in close enough I can still see his smile and I choose to be thankful.
At the CNIB I came into contact with low vision specialists, mobility instructors and vision rehabilitation therapists waiting to help guide me along my journey. They were armed with tips, tricks and tools to make my life easier and safer. My new found security began to inch me toward rebuilding the confidence I had lost. Most importantly, these wonderful people were in place to help me help myself. My perspective was forever changed after that day, as if a grand light bulb was suddenly given power. A fantastical idea was set in motion; I could STILL have a fulfilling life. I just needed to alter my thought pattern and realize there are a great many ways to achieve what I want out of life. When I reflect on all that has brought me to this moment, it is without a doubt the unwavering support, perseverance and binding love of my husband, family and friends.
As I continue to nurture this positive relationship within myself, I know it will prove to be the most influential, challenging and certainly the most rewarding. A negative mind will never provide a positive life.