The experiences of disabled people can help in understanding much about human nature. Take denial.
My friend Adam and I launched into an email discussion of denial after I encountered a piece by a blogger named Jason Romero, who has experienced vision loss as the result of retinitis pigmentosa (RP), an eye condition which Adam shares. Both Romero and Adam had their RP diagnosed at an early age and were told it would cause slow and ultimate loss of sight. Both reached their forties before the need for adaptation became inescapable, and both still have some useful vision. Romero’s post begins:
I have always heard about the term ‘coming out of the closet’ as it relates to sexual orientation. I recently realized that I also lived this tortured existence as it related to my visual condition.
Romero admits that well into adulthood, he pretended his vision was adequate for such tasks as driving, even though he had to select times of day and routes that presented the least danger. (For similar stories in full-length memoirs, see my essay “Time to Move Past Memoir.”) It is this form of denial, where the person fails to come to terms with his own behavior at some cost to himself and possibly to others, that is legitimately deemed a disorder.
After I alerted Adam to Romero’s blog, he replied: “It amazes me how common denial is as a reaction to sight loss. Denial and shame. What does it say about humanity that people are so scared of not being perceived as ‘normal’ that they’ll risk life and limb to avoid showing the world who they really are.”
Adam writes in the third person there, but he is the first to say that he, too, has engaged in denial. However, while (for all I know) he may have taken on risks for himself, it is impossible to imagine that such a gentle man would do so if it entailed risk to anyone else.
I wrote back: “Although denial was about shame in Romero’s case, it doesn’t have to be. It can reflect a realistic recognition of society’s response to disadvantaged people of any kind, whether the beggar at a subway entrance you mentioned the other evening or older people refusing to wear conspicuous hearing aids that would enable them to communicate better. Once we’re parked in a wheelchair or declare ourselves with a white cane, we change society’s view of us. To go through this adjustment is very, very difficult.
“That said, one practical reason we might give this reaction the pejorative term ‘denial’ is to discourage us from retreating into ourselves. Our perception of society’s view of us may be valid, but as you’re finding, it turns out that once we start making the adjustment, society starts adjusting to us. The situation isn’t static on either side.”
Adam replied: “There are inward applications of denial, too. It’s not just about pretending in the face of society to appear normal. For me anyway, there is (was) also an internalized motive. I am (was) lying to myself about my need because it represented a precursor to a state that I am (was) not ready to accept.”
Me: “You’re right, and I respect your resolve to be clear and honest with yourself. I went through a similar process in the early years, as you know. Even so, I hope you can put your self-criticism into perspective. You have no cause to be unkind to yourself.”
I’ll pause here to acknowledge that some readers might conclude Adam and I intellectualize away our emotions, itself a possible sign of denial. The fact is that at times, Adam has struggled with the deterioration in his vision, as did I. But he’s an executive at a financial firm, while I practiced law for twenty years, and we can’t help but analyze everything, including our feelings. Besides, thinking things through in this way helps transform an instinctual fear of blindness into a manageable set of problems.
After mulling over his most recent message some more, I sent him a paragraph from my memoir. As he already knew, I lost my vision long ago, due to a different eye condition. By middle school, I could see only out of a tiny aperture in the bottom right corner of my right eye, but even that little vision enabled me to walk a straight line by following a row of windows in daylight or a hallway’s ceiling lights at night. By late in high school, the eye had deteriorated still further, which ought to have made it hard for me to pretend away the impending loss of sight:
The tiny aperture of vision that used to help me navigate was opening less often. Even before my eye sustained the day’s stresses, I could at best make out the shiny turquoise or red of my notebooks. But the gradualness of the decline freed me to live with denial. So what if I were deluding myself? Denial was a skin I’d shed when the time was right.
Adam replied: “This opens another facet of denial. Is denial a conscious decision or an unconscious, unrecognized reaction? Does being in denial have to mean that one has fooled oneself into believing that which isn’t true, casting aside a reality that’s too hard to deal with? I’m reading that passage to say that, much like me, you were fully aware of your choosing not to address the dark future in the dimming present. Denial was a conscious decision to turn away from what you knew to be the facts of your future and just live in the present.
“There’s that passage in Dostoyevsky, the one in which the condemned man continues to see an infinite future for himself, even as he is about to be tied to the stake before the firing squad. Is that really denial? He’s not fooling himself into thinking he’s not going to die. It’s just easier not to think too far ahead. So what’s that? Procrastination?”
Me: “That seeming contradiction of denial and awareness is what I discovered through the process of writing. I knew what I was doing, as you know what you’re doing.
“In your Dostoyevsky scenario, the condemned man thinks about everything under the sun except death while he’s not yet tied to the stake. Between imposition of sentence and the bullet, is it truly denial to mentally defer the moment? Or is it that the fact of death hasn’t taken hold? Fear, yes, but not the actuality.
“Because of the long and gradual transition involved in RP, you’ve got one foot in one reality, the other in another. I believe procrastination is the wrong term for how one handles it. I also think ‘fooling himself’ is overly negative. Maybe I’d call it an honest assessment of a gradually shifting reality, like the spectrum of colors from blue to red. If you’re at mauve, are you really fooling yourself by not jumping ahead to red, or are you accepting you’re at mauve? Mauve says prepare, but it doesn’t say you’ve arrived.
“Denial in the usual therapeutic sense would be if one rejected the necessity of preparation. You use magnification devices and have set your iPhone to VoiceOver. You also don’t pretend you can drive! Once Dostoyevsky’s condemned man is tied to the stake and the moment for the order to fire draws near, his state of mind would surely move from mauve through deepening shades of red.”
That’s where our email exchange ended. I dislike referring to blindness as darkness; blindness is an absence, while darkness has a presence. That reservation aside, I like the idea that denial can be constructive and that it can be a conscious process.
Here are excerpts from the Dostoyevsky passage that Adam referred to. It’s from The Idiot (1868-9), and Prince Myshkin is speaking:
‘… This man had once been brought to the scaffold in company with several others, and had had the sentence of death by shooting passed upon him for some political crime. Twenty minutes later he had been reprieved and some other punishment substituted; but the interval between the two sentences, twenty minutes, or at least a quarter of an hour, had been passed in the certainty that within a few minutes he must die…
‘About twenty paces from the scaffold, where he had stood to hear the sentence, were three posts, fixed in the ground, to which to fasten the criminals (of whom there were several)… My friend was the eighth on the list, and therefore he would have been among the third lot to go up…
‘He said that those five minutes seemed to him to be a most interminable period, an enormous wealth of time; he seemed to be living, in these minutes, so many lives that there was no need as yet to think of that last moment…
In 1849, Dostoyevsky had endured a mock execution in just these circumstances, except that rather than being eighth in line, he was among the second group of three scheduled to be shot. [See Part 1, Chapter 5 of Dostoevsky: The Years of Ordeal, 1850-1859, by Joseph Frank (1983).] I’m confident Dostoyevsky explained his own minutes of denial through Prince Myshkin.
Although his life was spared, he was sentenced to a prison term in Siberia followed by military service, lasting all told a grueling ten years. Then he proceeded to write some of literature’s greatest works.