I’m undertaking a 1000-day reinvention project, blogging here daily to track my progress. In Tuesday Book Club, I share an idea from a book.
In The Wounded Storyteller, Arthur W. Frank proposes that there are three kinds of stories a person can tell about an illness or disease — restitution, chaos, and quest:
Restitution stories attempt to outdistance mortality by rendering illness transitory. Chaos stories are sucked into the undertow of illness and the disasters that attend 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.
Frank suggests that Nietzsche was the paradigmatic illness-as-quest storyteller:
My nominee for parenthood for the contemporary quest story… is Friedrich Nietzsche. Nietzsche suffered from undiagnosed chronic ailments, including debilitating headaches. He wrote, “I have given a name to my pain, and call it ‘dog.’ Nietzsche describes his pain as having the dog-like attributes of being faithful, obtrusive, shameless, entertaining, and clever. “I can scold it and vent my bad mood on it, as others do with their dogs, servants, and wives.”
Yesterday I wrote of Nietzsche’s theory, or perhaps psychological trick, of eternal recurrence, the wish that one’s life events would occur again and again into eternity. This was Nietzsche’s way of affirming and even celebrating the miseries of his life (which included a decade-long period of descent into madness). This was the lesson he took from his at times miserable life. He was, indeed, a wounded storyteller.
The hero’s journey frames a quest narrative
Mythologist Joseph Campbell developed a popular narrative framework for interpreting myths and other cultural stories: the hero’s journey, in which the hero is called to adventure, departs his ordinary world, traverses a road of trials, experiences temptation and atonement, and then finally reaches an apotheosis (elevation to the highest, most perfect or even divine status). After this, the hero returns with some insight or other reward to give back to society.
In a quest story of illness, the hero doesn’t physically war with enemies. The wounded storyteller is a different kind of hero, writes Frank:
For me as a member of the remission society, Campbell deserves his influence because of his moral insight that mythic heroism is evidenced not by force of arms but by perseverance. The paradigmatic hero is not some Hercules wrestling and slugging his way through opponents, but the Bodhisattva, the compassionate being who vows to return to earth to share her enlightenment with others. What the myths are about is agony. The hero’s moral status derives from being initiated through agony to atonement: the realization of oness of himself with the world, and oneness of the world with its principle of creation. Suffering is integral to this principle, and learning the integrity of suffering is central to the boon.
This makes me think of one of my favorite forms of meditation, tonglen, a compassion practice in which you start by experiencing your own suffering (or that of someone close to you) and then expand the feeling and compassion for that suffering to all the beings who experience it.
A call to adventure from my left eye
Yesterday I began reading recent research into epiretinal membranes (ERM) a.k.a. “macular pucker”, the visual disturbance I am confronting, and their surgical treatment (there is no treatment other than surgery). I have a thin layer of scar tissue over my left eye’s retina. It is pulling on my retina and distorting my vision. I have always had poor vision in my left eye, but now it is so bad that I must occlude that eye when I’m trying to read or work on the computer. My visual acuity can be corrected to no better than 20/80, and I suffer from metamorphopsia, or distorted vision. Lines that should be straight appear wavy to my left eye.
This makes me recall Gordon, who I worked with in my first software engineering job in 1991. He had terrible vision, much worse than mine. He wore the proverbial coke bottle glasses. During the time I worked with him, he suffered a retinal detachment (apparently more likely to happen in those with severe myopia), and had to sit upright for what I recall was a month-long period of time, as the surgical repair healed.
Now, apparently, the approach for retinal surgery often involves using a gas bubble to hold the retina in place, which can require weeks or months of positioning one’s self face-down for up to 22 hours a day! However, for an ERM peel and vitrectomy (the surgery that treats an ERM) the surgeon may use only a small gas bubble or not at all (according to Claude).
I had been worried the most about being awake for a surgery on my eye. These kinds of surgeries are almost always done under local, not general, anesthetic apparently. But now I’m worried about what the recovery may bring, should the surgeon recommend surgery and should I choose it. Since my visual acuity is just 20/80 corrected in my left eye and I’m suffering from metamorphopsia, surgery seems a likely path forward. How will I manage the recovery? What if I suffer a retinal detachment because of the surgery (a common complication)? Maybe I will find myself face down for weeks.
I feel some kinship with not just Gordon, but also my good friend JL, who has to get injections in his eyes every six to eight weeks for a chronic macular problem, and who has had more than one retinal surgery in his life. I feel compassion for my dad’s partner Hilde, who has had macular edema since getting cataract surgery a few years back. These people have already gone on their own hero’s journey. Perhaps now it is time for mine.
To hide my disability or not
This problem with my eye is disabling. Last fall, I bought a robot vacuum for the first time. Even with reading glasses, I could not read the tiny light gray text that Roborock uses on its vacuum control app. Adjusting settings on my phone for contrast and text size only helped a little. That may have been the first evidence I had of my macular pucker though at the time I just assumed it was my regular old astigmatic, myopic, presbyopic eyes causing the problem.
For now, in order to use my computer, I have a pair of reader glasses with saran wrap over the left lens. At first I occluded the lens with medical tape but, through chats with Claude, learned that diffusing the incoming light and images might work better. In talking with my optometrist, I also learned that some people have glasses made with a frosted lens to achieve the same thing.
“Then,” I thought, “people will know I have a vision problem.”
But isn’t that okay?
Frank writes that some people turn the agony of their illness and its after effects into a manifesto:
Writers of manifestos underscore the responsibility that attends even provisional return from illness. Society is suppressing a truth about suffering, and that truth must be told.
He cites Audre Lorde’s experience of mastectomy:
The clearest prophetic voice is that of Audre Lorde. Lorde’s anger at social secrecy and hypocrisy finds its focus in demands that she begin wearing a breast prosthesis after her mastectomy. When she visits her surgeon’s office ten days after surgery, the nurse points out she is not wearing a prostehsis. The observation turns into an order…. The nurse’s bottom line is, “We really like you to wear something, at least when you come in. Otherwise it’s bad for the morale of the office.”
A culture which celebrates and even demands we all enact youth, and beauty, and perfect physical health seeks to disguise physical disability or difference.
In the past, when I ordered glasses, I have had to select frames that are not too large, lest my lenses look like Gordon’s. I have always ordered lenses with high-refractive material, again to make them smaller and sleeker. And anyway I mostly wear contacts, because they have given me good vision in the past and I find them more comfortable than glasses to wear — plus, they hide the fact of my poor vision.
I am not trying to imply that my relatively minor vision problem is anything like suffering breast cancer and a mastectomy. I’m just exploring the urge to hide what has gone wrong with our bodies versus using it as a way to connect with other people who suffer similarly.
Frank writes:
Seeking to be for the other, reaching out as a way of being, does not mean rescuing this other from his own contingency. What will happen to the other person, what he will end up suffering, remains as contingent as what happens to the self. Communicative bodies seek instead to affect how the other understands her embodied contingency. To use Campbell’s terms, the communicative body seeks to share the boon that it has gained upon its own return. Others need this boon for the journeys they necessarily will undertake.
Finding a boon for society
I think of an aphorism that a friend shared with me recently, one that she heard from Demi Moore, via a documentary about the brat pack:
Things don’t happen to you, they happen for you.
Perhaps I could change that, given today’s reflections, to:
Things don’t happen to you, they happen for you, and, should you choose it, for others.