Twenty-five years ago I heard terrifying words from a doctor: “You have a degenerative condition that will cause severe vision loss.” Delivered in a cool and distant manner, those few words prompted me to ask several questions. What caused this? What could we do to treat the condition? “I don’t know” said the eye doc, as she ushered me out of her office.
I never went back to that doctor. Instead I sought a referral for an ophthalmologist from family members, hoping to find one who had a better “bedside manner,” one who could do more testing. The new doc confirmed that I had keratoconus, but her only “prescription” was to avoid excessive eye rubbing: She said there was no known cause or way to treat the disorder beyond corneal transplant. And while I was glad to know there was a surgical option if I were to lose most of my sight, I decided to consult an acupuncturist to see if it was possible to slow or stop the spreading distortion in my cornea. He covered my body with needles, confident in the medicine to restore balance in my body.
Being an inquisitive person, I also began to wonder what might be behind my development of keratoconus. What did I not want to see?, I asked myself. While I couldn’t answer definitively, I sensed that I had not been honest with myself about a destructive relationship and weak sense of self. When a second acupuncturist told me Chinese medicine views eye conditions such as mine to stem from unexpressed anger blocking the liver meridian, I searched my heart for anger and realized I certainly had squelched any trace of that particular emotion. I am not certain I plumbed the depths of my disease or had THE answer, but I continued to mull over questions about my diagnosis and messages it might be conveying about myself and my life. I remained curious and open to what I might learn.
These days I still see perfectly well with the aid of regular glasses. I can’t say if the acupuncture, or mindfulness and self-growth worked or if I was just lucky, but I am grateful to be where I am. By chance my eye condition led, after a layoff during the 2008 downturn, to a job working with people with vision impairments that I held for five years and a subsequent position in the same field that I still hold today. In my current job I work with people struggling to adapt to vision loss, and I now encounter people who do not see literally or figuratively or both. Sometimes organic or traumatic reasons have affected the eye, and on the other hand, people do not admit they are losing vision or that their doctor can no longer help them.
I encounter both denial of the condition and the reluctance to open one’s mind to the loss, to a new way of living, to learning about the continuum of care available and the resources that can help begin life anew. I have seen people withdraw and become isolated or wholly dependent on others’ help, others who sought help only after years of such behavior, and still others who dive in to learn all their options and gain skills to do tasks in entirely new ways.
I speak, present, teach, make referrals, but most of all I listen. People tell me their doctors say there is nothing they can do so why bother, while others relate stories about amazing transformations. I feel there is something in this work for me to learn, something about life and healthcare that may benefit us all. Much like having a chronic illness or living with an injury, living with vision loss entails experiencing fear, grief, and sometimes helplessness. Yet when we acknowledge the reality of our loss and our condition, when we let go of wishing for another outcome, we can begin to live in new ways. None of us deliberately and consciously chooses these “disabilities,” and yet they remind us of who we are. We are all vulnerable, we are all conditioned by the society and institutions we were born into, and part of our development entails coming to terms with who we are beyond all that.
Losing sight means having to reorient entirely–to use touch, hearing, smell, and intuition more intensely, to relearn old skills in new ways. In short to see differently. We learn to advocate for ourselves, to deliberately seek what is possible for us and ways we most want to engage in life. We learn to listen within and to go beyond what our doctor says when we suspect that other realms and possibilities await us.
We might all might benefit from questioning whether we are really seeing reality–our own or that of the human condition. How much of the way we see is defined by the society within which we are enmeshed, and is that definition accurate? Have we perhaps limited ourselves or been blind to the possibilities of life? Are we seeing others as they really are,or do we realize that we may not really see them accurately? Can we move beyond some core beliefs we hold about ourselves or the world and discover a new way of being?
What will we do if we become sick, or lose a career that has defined us, or a person who has shaped our own world? Much of life–certainly the challenges–asks us to consider how accurately we are seeing, whether the stories we tell ourselves are true, whether we are willing to learn to perceive and to behave in new ways.
We live in times in which the institutions and work world are dramatically changing. These are times that ask all of us to see in new ways. I am grateful for my experience with my own diagnosis and for the honest sharing I have heard from many people of all ages who live without sight and yet who have chosen to set out into the world in all their vulnerability and strength. People who learn they are both dependent on others and free to do and be all they can be, who let go of the old and learn from necessity as well as from a renewed sense of self. In truth, through their experience with loss, interdependence, and starting anew, they may see more clearly than we.