I’m undertaking a 1000-day reinvention project, blogging here daily to track my progress. In Thursday Thinker, I share a smart idea or theory.
I found out this week that I have an epiretinal membrane a.k.a. “macular pucker” in my left eye, a thin sheet of scar tissue over my retina that is pulling on it and distorting my vision so that I see lines and letters as wavy instead of straight (metamorphopsia). My distance vision is also compromised such that it can’t be corrected to better than 20/80. This is a fairly common complication of aging but also can be related to eye trauma. It could have been caused by my ski accident last fall, in which I hit my face hard on the snow. I had goggles on, but still, my eye could have been concussed.
I had to start wearing readers to use the computer in January, despite my monovision contact setup in which I used to use my left eye for reading and computer work. That worked for 10 or 15 years since I first developed presbyopia. Now I have to use my right eye for both distance and reading, though my left helps with distance depth perception for example when driving.
I’m scheduled with a retinal specialist in two weeks to discuss surgery, the only current treatment for macular pucker. The surgery, a vitrectomy, has many potential complications and usually causes the development of a cataract within a couple years. I understand recovery would be slow, and would not necessarily bring back the vision I had before. Whether to have surgery for this situation or not depends on many factors. I know it won’t be an easy decision to make.
Last night I couldn’t sleep, worrying about this new challenge. I have had poor vision my whole life. I’m extremely near-sighted and I have severe astigmatism in both eyes. I was looking forward to getting new lenses whenever I developed cataracts, so that I could experience good vision after so long.
Now I’m living a different story. I was upset at first and then I realized: this is life — this suffering, this unknowing, this having to choose something that could worsen my already poor vision if it goes wrong. This is my life, this is my quest: to accept my failing eyesight and what it brings with it.
Three kinds of illness narratives: restitution, chaos, quest
In The Wounded Storyteller, Arthur W. Frank covers three kinds of narratives that people use in telling stories about illness: restitution, chaos, and quest.
While Frank writes about illness, his work applies equally to injury, impairment, and disability, such as I am facing. He writes about the human experience of having a body that stops working the way it used to.
He finds the restititution storyline unsatisfying, as it centers the doctor not the person with the illness, and foregrounds the return to health rather than the experience of ill health:
Restitution represents my life as a patient. Health-care workers expected any experience to be interpreted within a narrative of movement toward recovery of health. Whatever happened to me could be understood only as a necessary step toward that achievable goal of health. I wanted to get well and appreciated reassurance that I would. But I also needed recognition of my suffering at that particular moment, as well as recognition that my recovery was by no means assured. I increasingly resisted the restitution narrative, especially how it positioned the physician as the protagonist and relegated me to being the object of that protagonist’s heroism. I was certainly part of this story, but it could never truly be my story.
Instead, he prefers the quest narrative:
Time spent being ill ceased to be time taken away from my life. Instead, how I lived with illness became the measure of how well I could craft a life, whether I was ill or healthy. This attitude is the basis of understanding one’s story as a quest narrative. Illness remains a nightmare in many ways, but it also becomes a possibility, especially for a more intimate level of connection with others.
As a first step in accepting the reality of my life, and my perhaps permanently uncorrectably poor vision, I am not hurrying towards some resolution that may never come. Time spent struggling with seeing is still my life.
I’ve found a number of ways to make this journey easier. I’ve occluded the left lens of the readers I wear for computer work, since the left eye only distracts with distortion. I had already started increasing the text size on my various devices and will continue doing that until I feel no visual strain. I’m going to be ordering new glasses that correct only for distance in both eyes and leave the reading problem aside. My left eye does help with depth perception in distance vision, where the distortion isn’t so distracting.
I’ve also discovered that, without contacts in, I can read a book or magazine if I hold it very close. The distortion all but disappears. This suggests my brain can still combine text images from both eyes even in the presence of the distortion caused by the macular pucker.
meeting suffering head on
Frank writes:
Restitution stories attempt to outdistance mortality by rendering illness transitory. Chaos stories are sucked into the undertow of illness and the disasters that ttend it. Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience. [emphasis mine]
In a recent dharma talk, Buddhist teacher Gil Fronsdal discusses the topic of suffering. He outlines five levels of suffering that you might experience:
- “A suffering that just suffers.” When you feel in distress in some way, fearful or anxious, or sad, or angry, and that feeling you have is “so full that there’s nothing else.”
- Recognizing suffering as suffering. Talking about it. Identifying it. “Step away from it well enough to recognize, oh, this is what’s happening.”
- “Begin seeing it so clearly that we see that there is pain, and there’s our contribution to the pain.” The classic analogy of two arrows. “The first arrow is being struck by life. The second arrow is what we do in response to that.” For example, I hear I have a macular pucker. That is upsetting. But then I start catastrophizing about it. Thinking I’m going blind. Thinking I won’t be able to cope with the surgery.
- Meeting our suffering better. Being in the present moment and directly experiencing it. Feeling what it really feels like — the particular sensations — the tightness in the shoulders, the contraction in the chest. Becoming aware of suffering as grasping and clinging and being attached to wishing things were different.
- Beginning to experience freedom, where some part of the heart and mind is “not caught by the suffering, not reactive to the suffering. Finding more space to allow for the suffering and freedom to co-exist.
I used to meditate regularly and I’ve long studied Buddhist ideas. Perhaps one part of my vision quest is to return with more energy to mindfulness practices and ideas, as a way to meet my suffering head on.
a shipwreck
An illness, or the emergence of a disability as I am facing, can feel like a wreck. I literally wrecked myself on the ski slope, possibly more than I imagined at the time and immediately after.
Arthur writes:
These stories are told in conditions of fatigue, uncertainty, sometimes pain, and always fear that turn the ill person into what Ronald Dworkin describes as a “narrative wreck,” a phrase displaying equal wit and empathy. Judith Zaruches’s metaphor of losing her map and destination suggests illness as a shipwreck. Almost every illnes story I have read carries some sense of being shipwrecked by the storm of disease, and many use this metaphor explicitly. Extending this metaphor describes storytelling as repair work on the wreck.
A story of a wreck and its repair is so much more interesting than the story of a ship that sails on calm seas?
Moving beyond the cliché idea “everything happens for a reason” to Nietzsche’s idea of eternal recurrence, one can see everything that happens as necessary and as though it could not have been otherwise. Instead of seeing an illness, or emergence of a disability, as an interruption, consider it as an integral part of the whole life and one’s being:
Interrupted narratives find many different purposes, and these will be considered in the following chapters. The most general terms of purpose are suggested by Genevieve Lloyd, describing Nietzsche’s concept of the eternal return: “It is a matter rather of seeing everything that happens—whether it be grand or unbearably petty—as integral to the being of a self which, if it were to recur at all, could do so only in its entirety.”
a midlife quest for meaning
Two days ago I felt sorry for myself, that my lifelong poor vision had seemingly suddenly become ten times worse.
Today, I see it as part of my midlife quest — a quest for meaning, for becoming who I might be (more authentic, more moral, more human than before), for a more deep experience of suffering and joy.