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From Here to There: But How?

As my parents drove me to the hospital for eye tests, I said, "I wish I were dead." Not that I really meant it, but I was leaving all that was familiar--my family, friends and school--to be told what was wrong with me. I already knew. I didn't need some stranger to tell me about my vision. To this quiet, ten-year-old, middle child of three heading off into the unknown, it seemed like the end of the world. Where was I going? When and how would I feel alive again? Hence began my journey from life to death, and back to life again.

It had all started about a year earlier with a lazy right eye--one that drooped, turned and blurred. My left eye was fine, and I relied on it for my vision. My left eye had done the seeing--until now.

In recent months, my vision had begun to deteriorate further. Standing at the back of my classroom sharpening my pencil, I saw the blackboard fade in and out of focus. Colouring, I noticed I did not stay within the lines. My handwriting wandered above or below the lines in my notebook. Letters and words bobbed, weaved and merged when I read. Worst of all, television and movie screen images sometimes doubled. Sitting in a local cinema at age ten, I watched clear images of Han Solo and Chewbacca repeatedly blur into writhing blobs, and then sharply crystallize again, all within a matter of seconds. It struck me that the Empire Strikes Back was somewhat less than striking--as was more and more of what I was seeing.

I had noticed the gradual and subtle changes, and I had subtly tried to hide them. I would act nonchalant when answering a blackboard question incorrectly, pretend I hadn't heard when asked to read aloud in class, and slip out to the washroom just as my turn approached to perform some task that required effective vision. It was almost like a game. Now, however, the game was up. My parents had noticed my face-in-the-book reading and wandering writing. So here I was, on my way to hospital. It was about midway through September, and I had just started grade five.

About two months after entering hospital, I was released. It was just before Christmas, and I was blind.

I didn't feel much of anything at the time. I had had a benign brain tumour, and I had contracted meningitis while in hospital. As a result, my basic functioning, memory and level of consciousness were affected. Although I re-learned how to sit, stand, walk, talk, eat, etc., it was like operating on automatic pilot--moving from day to day, never considering or being confronted by the reality of my blindness. I connected no particular value to it--negative or positive. It was only when I returned to school over a year later that the implications began to dawn on me.

How had "the blind student" and "the blind girl" replaced my name? Why were teachers seemingly and suddenly uncertain of my academic capabilities? What was this unfamiliar, intangible distance between myself and old friends? Why did people either focus entirely on my blindness, or avoid it altogether? Why did I vacillate between thinking I could do anything, and thinking I could do nothing? I had lost my footing, and I needed to regain it. But how?

Clearly, things were different. Expectations had changed. Funny, I thought, because I don't feel much different. Had I changed, or others? Whose perceptions had altered? Who did I want to be, or should I be? And, in the end, who makes those decisions? I needed to find the answers.

I started with the practical, learning relevant skills to living independently as someone who is blind. Once I knew braille, I could read textbooks, enjoy Nancy Drew mysteries, and write notes. Once I had some orientation and mobility skills, I could walk with a sighted guide or white cane at school. I learned to rely on my memory and other senses in order to determine my spatial position, and to identify personal and household items such as hygiene products, record albums and food packages. All of these skills I learned quickly and effectively.

But well-being involves more than just having the requisite skills. I often felt self-conscious and that everyone was watching me. Often, they were! Soon, my embarrassment over popping on a slate and stylus at my desk, loudly pounding on a brailler in class, having to answer questions about my vision loss, or tapping down the hall with my white cane became generalized feelings of shame about being blind. I never heard the word "blind" without cringing inwardly, and I never, ever, said that word myself! This attitude was not conducive to good health.

The first step in dealing with a problem is admitting there is one. I confided in page after page of Braille paper in the form of poems. From fear, anger, envy and disappointment to loneliness, I poured out my wretchedness into words only I could read. Years later, when I read over these poems, I saw someone who felt trapped by her blindness--the things she could no longer do, the things she feared to do, and the things that others could not conceive of her doing. For years, I lived in the past, longing for the days of old; feared the future, dreading what new embarrassment, pain or disappointment awaited me; and avoided the present, not wanting to deal with my anxieties or face the pity, ignorance or idle curiosity of others. I was slowly sinking into depression, but I didn't know it.

The next major step I took was attending the school for the blind in Brantford, Ontario. In hindsight, this was one of the best things that could have happened. Here, I was on an equal footing with my peers. I was free to be myself, to excel or fail regardless of my vision loss. Friendships formed based on common age and mutual interests. Just as it should be.

At the W. Ross Macdonald School, I was able to discover my abilities, recognize my limitations, and learn what is possible for people who are blind or vision-impaired. I had come to identify with a peer group. By the time I graduated, several lifelong friendships were in place. Personally and socially, I was on my way.

Midway through my high school career, health problems and depression re-asserted themselves. Doctors tested, diagnosed and treated a variety of physical conditions, some of which I still have. My depression, however, remained undiagnosed.

As with my decreasing vision years earlier, I had become adept at hiding the truth. Though I sometimes cried uncontrollably, isolated myself and dabbled in addictive behaviours, I smiled and acted cheerful, for the most part, when around others. But I knew that I was feeling sad more often. A psychologist enlightened me with "Don't focus on yourself. Reach out, and help others." But how? I couldn't see beyond my own problems.

During my senior year, my life took a turn. I became a Christian. In the depths of despair--feeling sad, angry, lonely, helpless and afraid--and with unpredictable health, I responded to God's offer of love and forgiveness. I decided to follow Christ. I haven't been the same since.

Post-secondary education and volunteer work were the forums in which I continued my identity development and adjustment. I began volunteering at a distressline, and subsequently took positions as a braille tutor, speaker and transportation coordinator. In these positions, I learned new skills. I realized that I could make a difference.

At school, I learned that I could compete with sighted peers. I learned how to learn and how to motivate myself. In both arenas, I saw the need, and took up the challenge, of self-advocacy and public education. Expressing my needs to others in terms of accommodations, setting personal boundaries in relationships, and informing others (and myself) about blindness issues are now ongoing activities--activities I once shied away from and considered beyond my comfort and competence levels. Another few steps taken.

Throughout my post-secondary education, I experienced periods of depression. On several occasions, I considered quitting school altogether. The bouts were getting longer and deeper, moving from lasting a few days here and there to months, and requiring more effort to shake off. And I was beginning to think about death. It was time to take my depression seriously! Up to this point, my attempts at getting help had been haphazard and not altogether honest. I would no longer consider it weak to ask for help or fear what others thought. Such attitudes were costing me! Another step.

My family doctor referred me to a psychologist who specialized in chronic illness. Perfect! She worked in a hospital, and the government would fund my visits. Double perfect! I quickly learned that much of my problem was the way I thought about things. Negative. Unrealistic. Not based on fact. Before long, I was feeling better, and I returned to university in the fall.

Things went well until, sometime after graduation, my mother had a stroke, and I hit a brick wall. Sessions now were more frequent and probed deeper. By the final session, I had learned a great deal about myself.

First, I was depressed. Although I already knew that, a clinical diagnosis validated my experience.

Second, I had unconsciously been living, to a great extent, according to others' expectations. I was frustrated, consequently, and never really knew where I stood. It would be in my best interest to establish my own expectations for myself, and set my own goals. These should be realistic, yet challenging enough to motivate and reward me. By suggesting I set an "achievement" and "pleasure" goal each day, my psychologist encouraged me to take control. And it helped! A further step.

I was learning that the super "adjusted" place or person doesn't exist. Despite the view, held previously by myself, that one can reach that optimal level of adjustment in a given area, it is false. Experts posit that one cycles through psychological or emotional stages, and the process has no end-point. When I learned this truth in a college class, it provided another validation of my experience. One more step.

But where do these steps lead? If that destination, the "adjusted" place or person, only exists in theory as some ideal, what is this journey on which I travel? Perhaps it's one merely of personal growth.

I learned the importance of a support network. My psychologist pointed out that we, human beings, are social creatures and need each other. I intuitively already knew that also, but I had tried to distance myself nonetheless from others. What I needed (and still need) was a network of people to which I could turn in time of need and, likewise, to which I could be a support. Whether it's two or twelve people, this network is an integral part of well-being for everyone. It often takes time and much trial-and-error to develop. Now, my support network consists of a handful of people--family members and friends--people I trust . One further step.

Finally, the psychologist remarked--to my horror, utter resentment and ultimate relief--that I was not taking full responsibility for my life. Well! After the alarm bells died down, the floor ceased shaking, and my ears and nose stopped expelling smoke, I thanked her for her insightful comment. Initially, I had thought, "How dare she! Doesn't she know what it's like to be blind? If she'd been through what I've been through ... If she'd known the people I've known ..."

But there's no point in going to counseling to hear what you want to hear and, when I got right down to the nitty gritty of the matter, she was right! My circumstances weren't responsible for my current situation but, rather, the ways in which I chose to respond to them. The real revelation was that I had a choice in how I respond. And I could choose to take control. That was a leap!

Today, I'm miles ahead of where I was some twenty-some years ago. I'm still blind, have unpredictable health, and still feel sad sometimes, but now I'm further along the road to well-being. Although I can't control some situations, I choose how I respond to circumstances. As a result, I feel and enjoy an increased sense of well-being. My journey might not have a destination (that is, that "adjustment" target), but my journey, and what I learned along the way, has served to bring me back to life--physically, emotionally, psychologically and spiritually. What God has started in me, He will finish.