I spent hours each morning alone with my friend Sheelagh Livingston during our trip to Northern Ireland last month. We talked about our partners, the Mournes (her favorite mountains to climb), her nephews, our plans for the afternoon. Sheelagh didn’t avoid talking about her health, but she didn’t want to dwell on it, either, so she asked after my own health instead.

Specifically, Sheelagh wondered what I remembered from everything that happened to me last April. When I got to the part where the miracle workers at Northwestern Memorial Hospital used a defibrillator to get my heart working again, I decided to go ahead and tell her about the near-death experience I had during those ten seconds my heart was out of whack.

It was when I was in pre-op that I coded — that’s a slang term for a cardiopulmonary arrest happening to a patient in a hospital. Up to that point I’d been in a lot of discomfort and pain, but then all of a sudden everything was quiet. Dead quiet.

The First thing I saw was my face. I was the age I am now, and I was starting to smile. “No bright light in the distance, nothing like that,” I conceded to Sheelagh, and the two of us chuckled to think that maybe blind people just can’t see that white light.

Me, Sheelagh’s beloved Beni and Sheelagh in 2007

I couldn’t describe what I was feeling during that time as peaceful, really. More like serene. I still remember shrugging and wondering why human beings spend so much time on earth being afraid of dying, and I recall feeling disappointed, too: no lightening, no thunder, no vestal virgins. It definitely was calm, though. Quiet. Perfectly fine.

A story in The Washington Post that happened to run a few weeks later said that “About 20 percent of cardiac arrest survivors report visions or perceptions during clinical death, with features such as a bright light, life playback or an out-of-body feeling.” National Public Radio (NPR) aired a story about near-death experiences that week, too. The NPR story said that researchers at the University of Michigan monitored the brain activity of rats that had been given lethal injections to induce cardiac arrest, and they found a burst of brain activity after the rats hearts had stopped.

Hearing this news on the radio surprised me. Doesn’t blood flow to the brain stop when the heart quits working all of a sudden? I figured without a fresh supply of oxygen, any sort of brain activity would stop, too.

But those rats at University of Michigan proved me wrong.

“Measurable conscious activity was much, much higher after the heart stopped — within the first 30 seconds,” Jimo Borjigin, who led the research, said in the NPR report. “That really just, just really blew our mind…That really is consistent with what patients report.”

Dr. Borjigin thinks that those of us who claim to have had near-death experiences really just had super intense dreams. She said that when we dream, a lot of activity goes on in one part of the brain, and the other part rests. She thinks something similar is happening with near-death experiences: one part of the brain is trying to make sense of what’s happening, while another part is kicking into a super active state to try to survive. “The near-death experiences, perhaps, really is the byproduct of the brain’s attempt to save itself.”

Sheelagh was in her bed, propped up with pillows and enjoying the tea and toast Beni brought her that morning as I continued my near-death story. I told her I’d just been settling into nothingness when I saw my mom’s face. Flo looked confused. And sad. Next stop? The living room of our Chicago apartment. It was dusk, and Mike was despondent, walking from window to window, looking outside. My Seeing Eye dog Whitney was tracking his every step, and I was nowhere to be seen.

Anyone who knows me well – and Sheelagh was one of those people – knows I do not suffer from low self-esteem. My oversized ego followed me to death’s dark door, for God’s sake. “You’d think I’d be considering world peace or balance or harmony, but all I was thinking was that I couldn’t let this happen” I told Sheelagh, setting the cup of coffee Mike had made me down to place my palm dramatically on my heart. “You must go on, Beth. Their lives will be so awful without you!”

Sheelagh didn’t laugh. She grew quite serious instead. “You have that wrong, my dear,” she said, explaining that those visions simply prove how much I love Flo, and how much I love Mike. “When you love people that much, you don’t want to do anything to make them feel sad.”

So what to think about those images I saw. A message from a future world? A super-active brain? Aliens? Supernatural powers? Intense dreams? Invasion of the body snatchers? A sign from God? I’m going with Sheelagh’s interpretation. It was love. And surviving that near-death experience and being able to travel to visit Sheelagh one last time? That was heaven.

That’s wee Sheelagh on the left, our friend Jim Neill, Beth, and Beni. It was taken in August, 2011 in the picturesque Collioure, France.

It’s difficult to put thoughts about our one-of-a-kind friend Sheelagh into words, so I am very grateful to my husband Mike Knezovich for doing that for us in his guest post today.

In August of 1986, our son — name still to be determined — was getting ready to be born. About the same time, Sheelagh Livingston — an unsuspecting college student from Belfast, Northern Ireland — arrived in Urbana, Ill. Sheelagh had qualified for a year-long exchange program at the University of Illinois, and found herself in the middle of corn and soy bean fields and 90 degree heat with 90 percent humidity.

Undaunted, she asked at the university Study Abroad office about volunteer opportunities outside of campus. She wanted to learn about real Americans, she said. Beth had worked at that office in her seeing days, and one of her former colleagues suggested that Sheelagh contact Beth, who needed a volunteer reader.

On September 3, 1986, the ob-gyn doctor said it was early, but it was time, and scheduled a Caesarian section. Gus was born, he nearly died in the delivery room, and he ended up being in the neonatal intensive care unit for a month. It was crazy, and I took to leaving status updates on our answering machine for concerned family and friends. During that time, young Sheelagh called our number and was treated to a message with a crisis-filled report on Gus and Beth’s condition.

She admitted later that she wondered what she might be getting herself into. “Bloody Americans,” she said, astounded that we’d share personal details on an answering machine. But she left a message. Beth returned it, and eventually, Sheelagh was coming to our home all the time. Ostensibly, she came to read to Beth — mail, bills, and other printed stuff I couldn’t keep up with. But Beth and Sheelagh hit it off riotously from the beginning and became partners in crime. They were two jigsaw puzzle pieces that somehow, serendipitously, fit together perfectly.

I had a lot on my plate back then, so I wasn’t always tickled to learn that somehow walks with Gus in the pram or visits to coffee shops had replaced reading that day. I’d come home, there’d they be. I’d ask how the reading went, and they’d both break into laughter. Reading?

Beth — and I — had a new friend. An interesting one. A vibrant, cherubic, impish, knobby-kneed, twinkly blue-eyed, red haired force of nature who talked a blue streak in a beautiful lilt. She was just good to be with in a room. Beth had been laid pretty low by going blind and then a year later giving birth to a baby with a genetic disorder. Sheelagh was unfazed by it all. And that meant everything to Beth, and really, to me, too.

Sheelagh took road trips with us, had dinner at our place, met our families and friends. And charmed pretty much all of them. When the academic year ended, we gave Sheelagh a hearty farewell party, and she was off for the finale of her American adventure: hiking the Grand Canyon. Beth was despondent. Sheelagh was the first friend she’d made after losing her eyesight. That hadn’t occurred to me until Beth said it. And it really drove home how, for just awhile there, Beth had lost her mojo. With Sheelagh, it’d come back, but Beth thought she’d seen the last of wee Sheelagh.

I, on the other hand, had no doubts that we’d see her again. And I was right.

By 1988, our lives had settled to the point where we could take a trip, with Gus in tow, to Europe. Beth’s sister Marilee and her family were living in Germany then, and they generously agreed to care for Gus so that Beth and I could take off for Berlin to meet up with Sheelagh and our mutual friend Gerald.

A lasting memory from our arrival at the West Berlin train station: I told Beth I could see Sheelagh and Gerald walking toward us on the platform. Sheelagh’s lilt was easy to distinguish from the other accents on the platform, and when she called out a hearty “Hullo! Beth spread her arms for an embrace. At that very moment another woman rushed by to catch a train, and Beth joined the stranger in a perfect, figure-skating pair twirl. They came to a rest, both broke into laughter, and the woman ran on toward her train. Sheelagh saw it all and arrived in a stitch, as she would say.

We sort of traded off continents from then on. We visited Sheelagh in her hometown, Belfast. We met her parents, ate shepherd’s pie cooked by her mom, heard the story of how her dad had been hijacked by an IRA operative, and got a taste of Belfast life during the troubles (it was actually pretty normal, save for the troop carriers). Sheelagh visited Urbana and joined us on a driving trip to the North Carolina coast, helping with Gus. We listened to Country Music, explained–as best we could–about the South and the North. She was entertained, if not also a little stunned. (“This country is so bloody big!”)

And so it went. We traveled back to Berlin after the wall came down, and we took a holiday in Italy together. Beth visited Sheelagh on her own in Rome once, too, and then with a friend years later, after Sheelagh became an occupational therapist and resettled in a lovely lough-side town in Northern Ireland called Portaferry. Sheelagh met her loving companion Beni after she moved back to Northern Ireland, and the two of them were married in 2011. We met up with them in Warsaw, Poland, for our friend Gerald’s wedding. And when Sheelagh and Beni visited us in Chicago we spectated at the Chicago Marathon, attended a gospel choir rehearsal at a friend’s South Side church, and biked the lakefront.

We were lucky to reassemble the crew this past July in Portaferry. That’s the beautiful Strangford Lough in the background.

Through it all, whenever Beth and Sheelagh would come together, they were immediately joined in rhythmic chatter. I have no idea what all they talked about — at least partly because Sheelagh talked very fast in her accent — and I gave up trying. Eventually I knew to learn to get out of the way for at least a couple hours a day and let them pick up from wherever they had left off, whether that was yesterday or last year.

We’ve communicated by sending old-fashioned cassette tapes back and forth over the years, and a few years ago Sheelagh sent a tape with some bad news: She had cancer. She underwent vigorous chemotherapy, and by the time we met her, Beni, and our London friend Jim (who generously organized our holiday) in France, you wouldn’t have known she’d had so much as a cold. After a long, tough go of it, she was the little bouncy ball of sunny mischief she’d always been. And we had a delightful time.

Earlier this year, Sheelagh scheduled a Skype call with Beth. Beth knew immediately it couldn’t be good news. I opted for denial. Beth was right.

The cancer was back with an evil vengeance. Not much more that doctors could do. Sheelagh’s wish? She wanted to be with friends. We planned our visit to Portaferry for May, but Beth’s SOB aortic valve tumor canceled that. We arrived in Dublin on the Fourth of July instead, after Beth’s doctors said it’d be safe for her to travel. Sheelagh and Beni met us in a camper van — they’d bought it earlier this year to take trips to see the friends Sheelagh loved so much.

It was a wonderful few days. Each morning, Beth joined Sheelagh in her bedroom while I read downstairs. Our friend Jim flew in for the visit, too, and every afternoon he’d arrive from the B&B he was staying at and we’d all have an outing together — Sheelagh was still mobile, if laboriously slow. “Our house looks like an OT equipment showroom,” she joked — and she and Beni did have walkers, grab bars, and other hardware of all stripes. We had lunch with her parents, who’d come down from Belfast. We took turns pushing her in a wheelchair as we walked along the Strangford Lough. We met the locals, all of whom knew Sheelagh and Beni.

Throughout, Sheelagh was…Sheelagh. I don’t know how, but she was.

This past Wednesday we heard from Beni:  After a bash for Sheelagh’s 48th birthday last week, things had gone bad to worse quickly. Sheelagh died at home, with her sister Fiona and her beloved Beni at her side.

It’s never going to make sense to me. I know that. I just hope I eventually learn to accept it. I’ll take great comfort from the gift of those four sublime, sunny days in Portaferry with Sheelagh and Beni and Jim. The combination of sparkle and spunk in Sheelagh’s face is etched, and I will always be able to recall her beautiful, sing-songy voice. And like all of her friends, I will always ache for just one more visit.

Gus loves to get out, and every other Saturday he goes to dinner with Bobbie Ladwig’s family. Here he’s getting attention from one of Bobbie’s daughters.

The emotions that come with loving an adult child who has significant disabilities can be difficult to put into words, but when a reporter interviewed my husband Mike for a story about our son Gus in this month’s Bethesda Messenger, Gus’ dad found just the right things to say.

Gus and his three roommates moved into a four-bedroom ranch house in Watertown, Wisconsin in 2006, and the story is an update on how they are doing now, seven years later. The house is supported with 24-hour staffing, and when he’s home, Gus loves sitting at the front window and watching kids play baseball in the small park across the street. Thing is, though, Gus is hardly ever home!

Our son rides a van to a nearby workshop on weekdays, and on his days off, Gus goes to music concerts, attends baseball games, visits the zoo. This weekend he’s going to a carnival with Bobbie Ladwig, one of the direct support professionals at his house. It’ll be Gus’ first time on a Tilt-o-Whirl, and I don’t know who is more excited, Bobby or Gus. In the Messenger article, Bobby tells us that a favorite activity for Gus is eating out at local restaurants :

Ladwig’s wife and six children have become part of the routine. “Every other Saturday, on the days I work, my family meets all of us at the selected restaurant,” Ladwig said. “My kids really look forward to seeing the guys and it is a great time.”

Uprooting Gus seemed daunting to us at first. We would have rather had Gus live in a group home closer to our apartment in Chicago, you know, so we could drop by whenever we feel like it, take him out for ice cream, bring him home to visit now and then. Illinois ranks shamefully low when it comes to providing services for people with developmental disabilities, so Mike and I felt extremely fortunate and grateful to find Gus a home in a facility hours away in Wisconsin. His house is run by Bethesda Lutheran Communities, Inc. “Things have been good for Gus. He gets out of the house and there are plenty of things that he is doing,” Mike told the Messenger reporter. “We have faith in the Bethesda organization.”

On our drives home from visiting Gus, Mike and I always talk about relocating to Wisconsin ourselves. Until that happens, we take great comfort in knowing our son is in good hands, and that he’s healthy and very happy.

Gus benefits from living in a regular neighborhood, and the community benefits from having him out there with them, too. “We used to come up to make sure Gus was OK,” Mike said. “Now we come just to visit him.”

I plan on starting the “Smelling is Believing” workshop I’m leading at Northwestern University’s Summer Writers’ Conference tomorrow sharing accounts of magazine and newspaper editors I’ve worked with who have doubted that a person who is blind could write a good story. You know, like the editor who asked me to write about Miss America, but then wondered out loud if a blind person could interview a beauty queen.

One handout I’ll pass out at the workshop has excerpts from books I’ve read the past couple months. Each excerpt is an example of an author setting up a scene without using their sense of vision to describe it. Here are a few examples, and please forgive any spacing or spelling errors — I transcribed these from the audio versions I listened to, and in some cases I had to make guesses:

• From Canada by Richard Ford: “At the end of these evenings, it was before eight o’clock, when Charlie would pass through, having checked the goose pits, and was telling the sports to go to bed since they’d be rising at four. I’d climb the stairs back to my room and listen to the hunters climb up to their rooms, laughing and coughing and honking and clingingclinking their glasses and bottles and using the bathroom and making their private noises and yawning, and boots hitting the floor until their doors closed and they’d be snoring. It was then I could hear single men’s voices out on the cold main street of fort Royale, and car doors closing, and a dog barking, and switches working the grain cars behind the hotel, and the air brakes of trucks pausing at the traffic light, then their big engines grinding back to life and heading toward Alberta or Regina, two places I knew nothing about.”
• From The Humanity Project by Jean Thompson (this is a description of Mrs. Foster, a new widow): “First there had been Mr. Foster, all dead and tragic. Kristy heard the story a number of times, because it was Mrs. Foster’s heart’s sorrow, the story she’d been left to tell, how she screamed in disbelief when she’d come home and found him, had fallen insensible on the floor, awakening in the dark next to the dead man, how she had touched his knees, and then his old face, speaking to him in an ordinary way about things she had done that day. It wasn’t the kind of conversation he had ever taken much of an interest in, and so she was used to talking to herself. There was only a little bit of normal space before she had to get up, make phone calls, and get on with the business of death.”
• From Catcher in the Rye by J.D. Salinger: “I went to my room and put some water on my hair, but you can’t really comb a crew cut or anything. Then I tested to see if my breath stank from so many cigarettes and the scotch & sodas I drank at Ernie’s. All you do is hold your hand under your mouth and blow your breath up toward the old nostrils. It didn’t seem to stink much, but I brushed my teeth anyway.”
• From White Dog Fell from the Sky by Eleanor Morse: “He left the door open to the night air, to let the heat of the day out. The polished concrete floor at the entryway was cool on his bare feet. Through the darkness, he felt his way toward the bedroom with his hands and bumped into a wall. When he stopped, he still heard that low, deep hum. He lay in the small bedroom with his eyes opened and imagined the thousands and millions of people on earth who would never be alone the way he was alone tonight. Every sound he heard was large: the wings of a moth, the donkey boiler outside groaning as the water inside its tank cooled, the creak of the floor in the living room. The room where he slept was the same size as the house he’d once shared with his mother and five brothers and sisters. In this house, there were still six more rooms, some of them much larger than this one. A small village could live here.”
• From The Wife by Meg Wolitzer: “Then Dinner was placed in front of us, and we ate that, and drank wine, too, and we settled back into our seats for the ride. Hours passed, and eventually we reached the time in any trans-Atlantic flight when travelers fall into a kind of shallow sleep, eyes skittering beneath their lids. No dreams penetrate the endlessly rebreathed air above everyone’s lowered or thrown-back head.”
• From The Round House by Louise Ehrdrich: “I fell asleep on a plastic couch and someone put a blanket over me. I sweated in my sleep, and when I woke, my cheek and arm were stuck to the plastic. I peeled myself unpleasantly up on one elbow. Dr. Eggy was across the room tending to Clements. I could tell right away that things were better, that my mother was better and that whatever had happened with the surgery was better. And in spite of how bad things were, at least for now, the picture wasn’t getting any worse. So I put my face down on the sticky green plastic, which now felt good, and I fell back asleep.”
• From When I Left Home by Buddy Guy: “I’ll spend the rest of the day in the kitchen. Maybe I’ll cook up a gumbo with fresh crayfish. When I was a boy, crayfish tail was bait. Now, it’s a delicacy! The rice, the spice, the greens, the beans. When I gets to cookin’, when the pots gets to boiling, and the odors go flowing all over the house, my mind rests easy. My mind is mighty happy. My mind goes back to my uncle, who made his money on the Mississippi River down in Louisiana where we was raised. My uncle caught the catfish and brought it home to Mama. That fish was so clean and fresh, we didn’t need to skin it. Mama would just wash it with hot water before frying it up. I can still hear the sound of the sizzle, and when I bit into that crispy cracklin’ skin, and tasted the pure white of the sweet fish meat, I was one happy little boy. That’s the kind of food I’m lookin’ for. I’m looking’ today, and I’m looking’ tomorrow, and I’ll be lookin’ for the rest of my life.”

It’d be silly for me to suggest that writers should do away with visual descriptions altogether, but hey, smell, touch, sound and taste sure can bring you to a place, can’t they?

Here’s a guest post from my husband Mike Knezovich:

Beth’s in two distinct minorities: She’s blind. And she’s one of the minority of people who are blind who also use guide dogs. (I’m leaving out that other ultraminority she’s in — you know, the group of people who have had a benign tumor the size of a marble on their aortic valve).

Which is all to say, she’s even more memorable to people than she would otherwise be. (And that’s saying something.) Our friends and acquaintances are justly curious about her blindness — and equally or more curious about the guide dog companions she’s had over the years. Consequently, they take special note when they see articles or TV features about other people who are blind and especially about other blind people and their guide dogs.

So, a week or so ago when the Chicago Tribune  ran a story about a war veteran who’d lost his eyesight in battle and who had to retire his first guide dog, lots of folks read it, loved it, and sent it to us or told us about it. Beth did read it and said it would push every sentimental button a human could have.

I didn’t read it because, well, I don’t read most of this stuff because — not to be too flip here — I live it. I don’t need my heartstrings tugged, I know about blindness, I love Beth’s dogs and I’ve lived through three retirements. I don’t need to seek out heart-wrenching experiences. And, to be honest, the writers often sentimentalize the stories in ways that I find a little condescending and often find impossible to believe.

Well, apparently, this story about the veteran was truly unbelievable. As in totally false. Yesterday, via The Beachwood Reporter — a fabulous Web site from Steve Rhodes that keeps an eye on journalism in the Chicago area and sometimes beyond — this little link popped up on my Facebook page:

http://www.chicagotribune.com/news/local/ct-met-sunday-reader-note-0728-20130728,0,1907352.story

It’s lengthy correction from the Tribune’s editors. An excerpt:

A July 21 story about a blind man and his guide dog contained major inaccuracies.

The story stated that the man was an Army veteran who lost his sight when a roadside bomb exploded. In fact, the man, John Maley, acknowledged in an interview late last week that he was not in the Army and that he lost his sight to diabetes.

Problems with the story came to light after a reader contacted the newspaper questioning the account of how Maley became blind.

The inaccurate information was provided to the Tribune by Maley, and we failed to seek corroboration for his story.

Because of that, the story contained a five-paragraph narrative of the explosion that was not true. In fact, Maley was not in the Middle East in 1991 and did not serve in the Gulf War, he said. Also, in the headline Maley is referred to as a veteran, which Maley now says is not true.

I didn’t read the story (and can’t now, because it’s no longer online), but this news left me sad and infuriated at the same time. Sad because the guy apparently needed and liked the attention so much he could tell that elaborate lie. Sad because really, I know enough to know he was worthy of a story without having been a veteran. Blindness is really really hard. Diabetes is really really hard. Working with guide dogs is both a blessing and an enormous responsibility. A good reporter and storyteller could find these stories and weave a compelling piece about the facts — and the story wouldn’t need embellishment.

The infuriated part comes from the insult he gave to veterans who did serve and were disabled during their service, and especially from the sloppy, irresponsible journalism that seems to be getting more commonplace. It ain’t the blogosphere I’m talking about — it’s places like the Tribune and the NY Times and of course, cable networks of all political bents.

One other emotion — disappointment. Whether it’s movies or television ads or social media, it seems that only extreme-to-the-point-of-freakishness items get our attention. Which numbs us to the true, quiet stories and accomplishments of people around us every day. It’s like we live in a big reality TV show. And we don’t value our own lives, which are pretty rich if we take the time to realize it.

Actual reality provides plenty of drama, heartbreak, inspiration, tragedy and comedy — can we just stick with that?