ELDER MUSIC: The Everly Brothers
Elders and Technology

An Extraordinary Personal Health Essay

When, last year, the shock of being diagnosed with pancreatic cancer had subsided to a small degree, I set about deciding whether to write about it in these pages.

A whole bunch of thoughts filled my head: This is blog about ageing, not illness. This blog is not a personal diary, it is an exploration of growing old in general. Writing about my experience with cancer in real time is overly self-indulgent.

On the other hand, since I am unlikely to be able to concentrate on much else for awhile, I may as well let readers in on what's happening so they will understand if I post on a reduced schedule.

And Sunday's TGB music columnist Peter Tibbles, when I consulted him, said that “it's best to tell readers what's going on. They're a smart bunch.”

All this came flooding back when I read New York Times Op-Ed columnist Frank Bruni's remarkable column yesterday. If I retained any doubts about my decision to be as open and honest as possible about the cancer, Bruni crushed them yesterday with his riveting account of life with a condition known as nonarteritic anterior ischemic optic neuropathy (N.A.I.O.N.).

It could, in time, leave him blind in both eyes. The manifestation for Bruni happened about four months ago in his right eye,

“...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.”

Bruni, who is 53, was told this usually occurs after age 50.

”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.”

The doctor said that in time the brain would adjust letting Bruni's left eye help give him useful vision. He might even get some clearer vision back in his right eye.

“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.”

Bruni gives us a lot more detail about N.A.I.O.N. and his treatment but what grabbed me are his continuing thoughts and fears about the possibility of permanent blindness.

”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.”

Further:

”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.”

Bruni met a 75-year-old judge, David Tatel, who has been blind since his late 30s:

”He adapted to his disability; his workplace adapted to him,” writes Bruni. “Various digital advances — in particular, text-to-speech technology — helped hugely. 'I’m really looking forward to self-driving cars,' [Tatel] laughed...”

Bruni also met Peter Wallsten, 45, the senior politics editor at the Washington Post who lost his vision in his thirties:

”He works on an enormous screen that shows letters in a gigantic font,” explains Bruni, “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.'”

No kidding. There are things much harder than a pancreatic cancer diagnosis too. Bruni also quotes Joe Lovett, 72, a filmmaker who documented his slowly developing glaucoma in the film, Going Blind. Lovett counseled,

“'...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.”

I recognized some of Bruni's and the other people's thoughts and conclusions; I had arrived at similar ideas for myself over the months since last June.

But what I most appreciated were the feelings he describes that I hadn't been able to find words for yet. And I get now why my personal celebration a couple of weeks ago at being told I am cancer-free has been more subdued that I would have expected.

Now too, I understand why so many of you, dear readers, have responded so positively to my chronicle of cancer treatment.

Frank Bruni's full essay is a stunningly good and important read that you will find here at The Times. If you do not have access, let me know (use the “Contact” link at the top of this page) and we'll work something out.


Comments

When I felt the need to write about my cancer, I too was reluctant to put all the details in my regular blog. So I started a second blog, dedicated entirely to the cancer, its treatment, my feelings about it, etc. There's a link to it in my main blog, but it's up to interested readers to decide whether to pursue it.

Bruni's eye condition is new to me, and I've studied quite a bit about eye conditions, having had surgery for both cataracts and glaucoma. I wish Bruni all the best. I think I'm more afraid of going blind than of recurring cancer. So far so good on both counts.

Yes, I read Bruni's column and my heart went out to everybody who thought they were in best of health to find out that an evil gremlin had been lurking in their body and suddenly appeared to change their lives forever.

The days are fraught with peril and if we think about it too much it will destroy today's happiness. We can only live today no matter what befalls. The strong ones try to live with courage and acceptance.

It is not always easy to push fearful thoughts aside. Most of us are not Pollyanna's. It's like getting over grief, for that is what we are doing when disaster falls. If we give in to it, we are on the path to a miserable life.

You did not give in to it and fought like hell to survive and, miraculously, you won, Ronni.
Writing about it was a gift to all of us and became a role model for many. You did the right thing by keeping your readers informed on what was involved in facing such a fearful diagnosis and we all learned how to cope from you. Thank you for that.

I was diagnosed with macular degeneration five years ago, terrifying, and now my left eye is getting cloudy, the beginnings of macular degeneration again..Frank Bruni column was exactly how I feel, I wake up and I can still see, no where near my youthful sight, but driving at night is over, I'm 74..thank you Frank for your talent and honest assesment of this frightening condition..Ursula

One of the people Bruni speaks with says "it's not your brain, it's your eyes." When someone gets a diagnosis of Alzheimer's disease, it IS their brain. Not too much reassurance possible after that, and no option to write a column or a blog. When my husband got his diagnosis 5 years ago, he talked about driving off a cliff. But guess what? He forgot : )

Some good insights as I sit here thinking of my dear husband's slide into dementia. I think I am right to continue to let him do what he can, even if it is driving with me as co-pilot. His reaction time is still good, his eye sight is still good. It's his brain that is the problem. We will work around it as long as we can.

"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."--as we more and more bump into our limits as we age. What a splendid article! Apt for me as I'm concerned about the optic migraines which I get with more frequency, the aura continuing but the headache practically disappearing.

To me and most of us here, judging from the posts this past year, taking us along on your dreaded, dreadful journey was a good thing for all of us. We embraced you and your condition, encouraging, cheering, crying, hoping.

Had you not, it might have left us each wondering what was "wrong," for your columns would have revealed some huge blank spots of one form or another.

So your telling gave us opportunities to learn, to change, to grow.

And now Bruni has passed on some understandings you're able to relate with and understand. I look forward to reading his column on this in the paper.

It's a damn shame there's so much separation, divisiveness, and other negative energies when embracing and sharing with others is so easy and feeds enrichment of contentment and togetherness.

"When will we ever learn....."


What beautiful sentiments. Really helps in times like these

Beautifully written! Thx for sharing! I had read Bruni's book about his eating disorder but don't follow his column.

I do volunteer work at a residence for people who are visually impaired. Some were blind at birth, others as they got older. All different ages. They are all remarkable people. One woman took sailing lessons last year.

Although I am following along with your posts, it has been with a casualness since I have not been diagnosed with it. My husband has just finished with five weeks of rado and chemo. Now he's goin through a remission with all sorts of side-effects and maladies -- but so am I! Started with DVT -- my left leg swole up to twice its "normal" size, then his did, too. Neither of us walks well. I can get onto the toilet, but can't get off it. So he must lift me off the stool and help me back to bed. I have fallen several times. I cannot get the walker into the bathroom and he will not allow me to get a home health care aide. Our budget will not accommodate that cheap, but not inexpensive furniture to replace regular furniture. I was prescient enough to forsee the necessity of the product line many years ago, but didn't have the money to invest in it back then or now.

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