You cannot spend your life preparing for future losses. It disrespects the blessings of the here and now.
Frank Bruni, of The New York Times, has been one of my favorite columnists for years. As you might imagine for someone who is a New York Times columnist, he has a keen intellect and is an exceptional writer. But the two qualities of Bruni’s that compel me to read his every column are his empathic even-handedness and logic coupled with an honesty about his own core beliefs and feelings. The latter he exhibits to just the right degree…not the grotesque reality tv display of dysfunction celebration nor the stoic Mt. Rushmore stance of the wise journalist speaking from on-high. Bruni has a way of writing that lets you know that he knows we’re all in this together, which includes subtle and periodic referencing that he is a human being and therefore has his own set of fears and flaws.
This morning, when I went to the nyt.com site to see what had happened in the world while I was sleeping, I noticed Bruni also had a column waiting. The title was a striking one. I had to read it. I hope you do as well. It delivers an insight that can only be known through the heart and spirit. Frank Bruni’s Am I going blind?
They say that death comes like a thief in the night. Lesser vandals have the same
M.O. The affliction that stole my vision, or at least a big chunk of it, did so as I slept.
I went to bed seeing the world one way. I woke up seeing it another.
This was about four months ago, though it feels like an eternity. So much has
happened since. I don’t mean all the tests and procedures: the vials upon vials of
blood; the mapping of major arteries in my neck; the imaging of tiny vessels in my
brain; the first injection of an experimental treatment (or, maybe, a placebo) into my
right, dominant eye, where the damage occurred; then the second injection; and
then, last week, the third.
I mean the rest of it. I went to bed believing that I was more or less in control —
that the unfinished business, unrealized dreams and other disappointments in my
life were essentially failures of industry and imagination, and could probably be
redeemed with a fierce enough effort. I woke up to the realization of how ludicrous
So I flailed on two fronts. I tried to grow accustomed, day by disorienting day, to
reading and typing with a thick, dappled fog across the right half of my field of
vision, which was sometimes tilted and off-kilter. I felt drunk without being drunk,
dizzy but not exactly dizzy.
I also fought not to be angry and afraid, a struggle familiar to anyone with a
significant illness or disability. The fear arose less from what I’d already lost than
from what I might lose still. Over the next five years, there’s a roughly 20 percent
chance that what happened to my right eye could also happen to my left. I could go
The odds are on my side. But the stakes are enormous. So how am I supposed to
process this? Where on the spectrum of optimism to resignation — of hope to dread
— do I position myself.
On that first morning, several hours passed before I accepted that something
was seriously wrong. I figured that I was just groggier than usual. Maybe I needed
As I sat at my computer transcribing a long interview that I’d just done, I
repeatedly took off my eyeglasses to clean them, convinced that the smudginess of
my vision was some streakiness on the lenses. When I finally gave up on that, I
rinsed my eyes with water — to no avail. It was as if someone had deposited a blob of
petroleum jelly in my right eye and nothing would dislodge it.
The next morning I visited my ophthalmologist, who for many years had kept
tabs on my run-of-the-mill astigmatism and fine-tuned my prescription so that I saw
20-20 with each eye. He said that in this case I needed a neuro-ophthalmologist. (I
didn’t know that such a specialty existed.) I found one, Golnaz Moazami, who could
squeeze me in a few days later, and after three tedious hours of staring at or into
charts and colored patterns and sophisticated machines, she told me this, in a rattat-
I had almost certainly experienced what is colloquially called “a stroke of the
eye,” whereby the optic nerve is ravaged by a brief reduction of blood flow and thus
oxygen. The name for this condition is nonarteritic anterior ischemic optic
neuropathy (N.A.I.O.N.), and it afflicts perhaps one in 10,000 Americans. But I’d
need extensive blood work and tests to rule out other possibilities.
This tends to occur after the age of 50. (I’m 53.) It typically strikes during sleep,
when blood pressure drops, and is sometimes associated with sleep apnea, diabetes,
hypertension or the use of pills for erectile dysfunction — none of which applied to
me. I was a mystery.
I would be surprised, Dr. Moazami said, by my brain’s eventual adjustment. It
would edit my right eye out of the equation so that my left eye could guide me on its
own, leaving me with entirely serviceable vision. There was even a possibility that I’d
get some vision back.
But there was a much better possibility that I wouldn’t. There was nothing I
could do — no diet, no exercise, zilch — to influence the outcome. Worse, the
“stroke” revealed anatomical vulnerabilities that meant that my left eye was
potentially in jeopardy, too, and there was no proven script for protecting it.
Certainly I should drink plenty of water, especially before bed, because
dehydration causes or aggravates blood-pressure dips. Probably I should take a baby
aspirin daily, to promote blood flow. Possibly I should avoid high altitudes, where
oxygen is thin. Mostly I should pray.
I’m not good at religion. I’m better at drama. I called Tom, my partner of more
than nine years: “Would you still love me with a cane and a bad habit of bumping
into things?” I called three of my best friends: “I’m fat, I’m old and now I’m a
Cyclops. Do you think there’d be interest in the movie rights?” I called my sister:
“You have to give me your dog. But first you have to retrain him as a companion for
the blind.” My phone soon ran out of juice. My body was pumped full of it.
An estimated one million Americans are legally blind, meaning that their
corrected vision is no better than 20/200. A few million more have life-altering
vision impairment. Just a tiny minority of both groups were born that way. The rest
lost their sight after seeing perfectly well. They almost always got some warning,
followed by a period of waiting and dread.
Macular degeneration. Glaucoma. Diabetic retinopathy. These are more
common culprits than N.A.I.O.N., whose obscurity helps to explain the lack of
progress in treating it. There’s no huge market of potential patients for drug
companies to profit from. No deep pool of test subjects to study.
Dr. Moazami confirmed that I had N.A.I.O.N. a week after our first visit. On
some people, its impact is subtle; they lose only peripheral vision. But the central
vision in my right eye was compromised, in an unsubtle fashion. When I use that eye
alone, I see the cloudy contours of things, and the nearer an object is, the thicker the
clouds are. I can tell that a paragraph is here. But I can’t make out a single word.
“This is bad, isn’t it?” I asked Dr. Moazami.
“This is bad,” she answered, then added, after an awkward pause: “I’m sorry. I
have nothing to offer you.” But wait, there was one thing: a clinical trial of an
experimental treatment, and she could tell me how to get into it — if I wanted to go
that route. I did. So I soon added a new, time-consuming dimension to my already
busy life. I became an ophthalmological guinea pig.
Ever looked at pictures of an optic nerve? I’ve appraised a Louvre’s worth of
them. And I can’t get over how fragile it seems, this slender thread, fed by about a
dozen minuscule blood vessels, that tethers the back of the eye to the brain and alone
decides whether you get to see the setting of the sun or the rising of a soufflé.
“I consider optic nerve damage the holy grail of solving blindness,” Neil Miller, a
professor of ophthalmology, neurology and neurosurgery at Johns Hopkins
University’s medical school, told me. “If you have somebody who’s virtually
completely blind from cataracts, we can cure that. Corneal damage? We can cure
those patients. We can help a lot of patients with retinal disease. But there is really
very little that we can do to restore vision that’s damaged from optic nerve disease.”
Rudrani Banik, one of the neuro-ophthalmologists who monitor me during the
clinical trial, told me to think of the nerve and its surrounding sheath as “a cable
within a pipe.” My pipe, she explained, is a quarter of the normal size, so if the nerve
swells — as nerves do when bereft of oxygen — it’s more likely to press up against the
pipe and be hurt. “Everything is congested,” she said. “Anatomically, we call it a disc
at risk. I hate to use that term because it scares patients.”
For the first month after my diagnosis, I’d catch myself absent-mindedly
rubbing my eyes, as everyone does, and terror would sizzle through me. Had I been
too rough? Was my congested nerve still O.K.? During a run through the park, a gust
of wind blew dirt into my left eye, and I panicked: I couldn’t allow any injury to it. I
no longer had a spare.
Nights were worst. If the left eye were going to quit on me, it would probably do
so then. I quaffed two, three, four glasses of water just before my head hit the pillow.
Superstitiously, I also took my baby aspirin then. If I somehow forgot to do either, I
bolted out of bed, no matter how close I was to sleep, and made amends.
Then, in the middle of the night, when my bladder screamed, I hesitated before
opening my eyes. What if I’d had another “stroke”? It was the same every morning: a
stab of suspense, then a gale-force sigh of relief. I could still see.
And I can still see. The oddity of my situation — the emotional riddle — is the
distance between the manageability of my current circumstances and what
tomorrow could bring. For the moment my handicaps are minor. I read a bit more
slowly than I did and frequently get a pinched, deadened sensation behind my eyes.
My typos have multiplied. My texting is a joke.
But extra determination and care compensate for most of that, and I’ve learned
that the best response to weakness is strength: Prove to yourself what you can still
accomplish. I had a column due three days after I woke up to my newly blurred
vision. I wrote it on time — and kept to my usual pace from then on.
I cut bait on just one of four speeches scheduled for the subsequent months. I
devoured more books, not fewer, partly on the theory that I should take advantage of
my vision while I had it, but also to train and reassure myself.
On a visit to Washington, D.C., I had a drink with a friend who works for David
Tatel, a distinguished federal appeals court judge there. I filled him in on my odyssey
and assured him that I was O.K., except for my anxiety about the future — about my
independence, my competence. I’m a writer, for heaven’s sake. Explain how I do that
“If this hits my left eye,” I said to my friend, “it’s game over.”
“Why?” he asked, then told me that Judge Tatel was blind.
Tatel, 75, welcomed me into his chambers a few weeks later.
He was given a diagnosis of retinitis pigmentosa when he was 15 and informed
that he would someday lose his sight. He coped by not dwelling on that. He went to
college and law school. He married and started a family. Then, around the age of 31,
his vision began a sharp decline that would end in blindness six years later.
He and his wife, Edie, had two of their four children after that point. He adapted
to his disability; his workplace adapted to him. Various digital advances — in
particular, text-to-speech technology — helped hugely. “I’m really looking forward to
self-driving cars,” he laughed, emphasizing that innovation is transforming the lives
of people without vision.
Of course he has regrets. In a speech last year for the Foundation Fighting
Blindness, he noted that while family members have become “true audible artists,”
describing everything that they pass on nature walks, “I still can’t see the clouds and
flowers and potholes myself — or my wife’s beautiful white hair.” He believes that he
knows what his grandchildren look like, from the sounds of their voices and his
memories of their parents, but he can’t be sure. “Have I created it?” he wondered.
That same afternoon I met Peter Wallsten, 45, the senior politics editor for The
Washington Post. When he was in his early 20s, he learned that he had Stargardt
disease, a juvenile form of macular degeneration that eroded his vision over the
ensuing decade. He works on an enormous screen that shows letters in a gigantic
font, and he listens to writers’ stories and does some of his editing by dictation.
“This is the important thing to remember: It’s not your brain that’s affected,” he
told me. “It’s your eyesight.”
He added, “There are things much harder than this.”
Harder than this: A friend of mine was recovering from a stroke before the age
of 60. Another friend was grieving the death of a 39-year-old spouse. A mother in
her mid-40s was questioning whether a rare cancer that she had battled for years
was really and truly defeated.
I found myself taking inventory of the obstacles and upsets that people I knew
were dealing with. There were children with autism. Parents with Alzheimer’s.
Financial crises. Career disasters. Addiction. Abuse.
And that was merely the stuff at the tip of my nose, in plain sight. How much
else lurked beneath the surface? Show me someone with a seemingly unbroken
stride and unfettered path. More often than not, he or she is hampered and haunted
in ways that you can’t imagine.
And despite my eye disorder, I’m in clover: economic security; access to good
health care; a durable relationship with a man whose face will delight me for as long
as I’m able to gaze at it, after which his voice, which I also adore, will do. What I’m
going through is what everyone endures as the years accumulate and the wear and
tear starts to show. It’s aging writ vivid and large. I’m bumping up against my limits.
The trick is figuring out when to focus on them and when to look away.
I increased my disability insurance. I deleted Machu Picchu, with its high
altitude, from my bucket list. I carved out the necessary hours and showed up for
every eye appointment. The third injection was my last, and there’s no meaningful
sign that the treatment is salvaging my devastated nerve, as it’s meant to. But it’s too
soon to reach any conclusions. I’ll be under observation for eight more months.
And I’ll try to put N.A.I.O.N. out of mind, apart from the water and aspirin.
Joseph Lovett, 72, a filmmaker whose 2010 documentary, “Going Blind,” chronicles
the slow worsening of his vision from glaucoma, told me that his best counsel was
that “you cannot spend your life preparing for future losses.” It disrespects the
blessings of the here and now. Besides, everyone lives in a state of uncertainty. Mine
just has funky initials and fancy medical jargon attached to it.
I’m no longer fit for summits, but I crested a modest hilltop on a run a few
weeks ago. I wasn’t after the view, but there it was, the Hudson River, gray and wavy
and magnificent. I could see upstream. I could see downstream. Lucky, happy me: I
could see for miles and miles.