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If you can't see, what does beauty look like?

September 7, 201313 CommentsPosted in blindness, technology for people who are blind, Uncategorized
All that time filming, and we already know who will be the star of the video: Whitney.

All that time filming, and we already know who will be the star of the video: Whitney.

Last Tuesday afternoon four creative and energetic young guys showed up at our door armed with audio equipment and cameras.

Ho hum, just another day for Beth Finke.

One of the four guys was my friend Mike Grant’s son, Sam. Sam and his buddies Craig Benzine, Matt Weber and David Wolff got some good news earlier this year: they received a grant from Google! The money is helping them fund a new channel on YouTube called The Good Stuff, and now they’re busy producing videos. Every few weeks The Good Stuff puts together a playlist of five or six videos centered around a theme (they’ve already covered subjects like Geeks, Origins, Airplanes, Miniature) and if I were you I’d subscribe to The Good Stuff channel right now so you won’t miss the episode coming up. The next theme is “Senses,” and these guys have already arranged interviews with:

  • experts from the Smell & Taste Treatment and Research Foundation,
  • a professor in the Department of Ecology and Evolution at The University of Chicago named Jerry Coyne who studies the concept of free will and how that helps determine ones sense of self,
  • Alpana Singh, the renowned Chicago sommelier who hosted the PBS program Check, Please and wrote the book Alpana Pours: About Being a Woman, Loving Wine, and Having Great Relationships, and
  • Me!

After giving Whitney some affectionate pats and belly rubs, Matt, David, Sam and Craig got to work right away, finding just the right spot for me to sit at in our apartment for the interview and making extra sure all audio and light levels were perfect before they started filming. Craig Benzine conducted my interview and made me feel comfortable in front of the cameras. He’s very familiar with YouTube: he already has an uber-popular vlog on YouTube called wheezywaiter that has half a million followers. That was not a typo. Half a million people subscribe to wheezywaiter, and Craig, Sam, Matt and David are hoping that someday a million people will be tuning in to The Good Stuff.

Craig was armed with all sorts of questions for me, many of them centering on my concept of beauty. Some examples:

  • Did your concept of beauty change after you couldn’t see anymore?
  • You hear stories on the news about the obesity epidemic, so when you’re going down the street with Whitney, doo you imagine everyone walking in front of you looking like balloon characters?
  • The people you were able to see, when you imagine them now, do you picture them aging?
  • Everyone describes Brad Pitt as so good looking, when you hear his name, do you come up with an image of what he looks like?
  • Do you have an image of what the four of us look like?

When the interview was over, they took some short takes of me playing piano and working at my computer, and then we headed outside so they could follow Whitney and me to her favorite tree. The guys had been with us for hours by then, and Whitney needed to go!

So is beauty in the eyes of the beholder? Find out the answer to that and other intriguing questions by tuning in to The Good Stuff now. All the previous episodes are there for you to watch, free of charge, and the producers hope to have “Senses” up by the end of the month.

To whet your appetite , how about I tease you with the answer to Craig’s last softball question. The response to whether or not I had conjured up an image of what these four guys looked like in the short time I’d come to know them was obvious. “You all look like Brad Pitt,” I shrugged, and funny thing, not a single one of them denied it.

Blind drunk

August 30, 201311 CommentsPosted in blindness, Braille, careers/jobs for people who are blind, memoir writing, Uncategorized
My Wednesday writing class and I are sure going to miss Pat.

My Wednesday writing class and I will sure miss Pat.

I’ve run across some bottles of wine with Braille labels on them over the years, and when I found out that the woman who’s been running programs for senior citizens at Renaissance Court ever since I started leading memoir classes there was retiring today, I thought a bottle of wine might be the perfect gift. Pat O’Malley is not blind, but a Braille bottle from me would be unique, meaningful, celebratory, and, most importantly: something she can enjoy in her retirement. I put my talking computer to work and unearthed a handful of winemakers who produce wine labels in Braille:

  • Michel Chapoutier, a well-known winemaker from France, claims to be the first to use Braille labels on wine bottles
  • Lazarus Wine is produced in Spain with the help of blind winemakers, so Braille labels are not just a nicety, they’re a necessity
  • Galant, a Czech wine producer, uses Braille labels designed in Moravia
  • Pyrotech produces wine bottle labels in Braille that are endorsed by the Institute for the Blind
  • Azienda Ciavolich in Abruzzo, Italy came out with wine labels in Braille thanks to the collaboration and assistance of the Pescara chapter of the Union Italian Ciechi (Italian Association of Blind People)
  • Fox Creek Wines received help from the Royal Society for the Blind in Australia to put out bottles marked in Braille and in large print, too.

Not a single American wine in the bunch, sorry to say. The Lazarus wine from Spain sounded particularly intriguing. Blind people interested in working at Lazarus learn the Sensorial Winemaking method by successfully completing one course on “viticulture, winemaking and wine tasting” (offered by The Spanish National Organization of Blind People) and a second “Sensory Course” (taught at the University of La Rioja). If any of you blog readers out there have tried Lazarus Wine, I’d love to know what you think, and where you found it!

In the end, when it came to choosing a wine for my friend who is retiring, I went with Chapoutier — it was the only one available off the shelf here in Chicago. I left Pat’s gift on her desk on my way to leading my memoir-writing class Wednesday. When she caught up with me later on to say thanks, Pat said she knew who that bottle was from the minute she sawfelt it. Cheers!

An American (League) success story

August 27, 201310 CommentsPosted in baseball, careers/jobs for people who are blind, Mike Knezovich, Uncategorized

I’m meeting a Major League Baseball scout for batting practice at White Sox park this afternoon.

That's Kevin at home with his favorite pooch Otto.

That’s Kevin at home with his favorite pooch Otto.

Okay, okay, enough with the jokes. Sure, the White Sox are having a bad year, but no, they are not so desperate they want me to play for them. The guy I’m meeting on the field really and truly is a baseball scout, though. The Sox are playing Houston, Kevin Goldstein is Director of Pro Scouting for the Astros, and he’s an old friend of ours. I got to know Kevin back in the 1990s, when he was working with my husband Mike at a start-up company called Spyglass. Kevin is smart, and he’s computer savvy, too, but so were most of the people I met at Spyglass. Kevin stood out, though:

  • He didn’t have a college degree (I think he was the youngest person working there, and Mike says he was one of the smartest).
  • He shaved his head long before it was popular (and he let me feel his scalp).
  • He listened to The Pixies and They Might be Giants (long before Indy rock was a category on You Tube).
  • He paid attention to new-age baseball stats, otherwise known as sabermetrics (long before the book Moneyball was published).
  • He knew about minor league prospects (long before anyone else did).

I worked in the ticket office at the minor league A team called the Kane County Cougars when Kevin and Mike worked at Spyglass. We enjoyed many a game there together, and when I went with Mike on a business trip once, we joined Kevin for a game during something called the “Arizona Fall League.” Today, the Arizona Fall League is a renowned showcase for up-and-coming minor leaguers. Kevin knew that a hot pitching prospect with the Cleveland organization named  Jaret Wright was scheduled to pitch. Who knew there was such a thing as an Arizona Fall League back then, and if there was, what day Jaret Wright would be starting? Kevin did. When Mike left Spyglass, we moved to North Carolina. When Kevin left Spyglass, he moved to baseball. This story on the Astros web site explains:

It wasn’t until Goldstein, who dabbled in the interactive industry and worked in consulting and marketing, started writing for Baseball America and developing his email prospect newsletter did he one day envision working for a Major League club. “It was something fun that I had a passion for,” he said. “I started Prospect Report, and it started growing on a strange level and some teams were interested in the information I was putting out there.

Mike subscribed to Baseball Prospect Report, and we were all excited when Kevin and that newsletter were mentioned in an ESPN article by Peter Gammons. Tens of thousands subscribed to Kevin’s newsletter after that, Baseball Prospectus (BP) hired him to write for them, and Kevin’s reputation grew as the analytical mind to go to when it came to scouting reports. He eventually took over at BP for Nate Silver — yes, Nate Silver of 538 fame. Mike and I started getting used to turning on the radio or TV and, ho-hum, there was Kevin again, being interviewed on sports shows about prospects. Major League Baseball teams started noticing Kevin, too. Last year while the Houston Astros were in town to play the Cubs, their general manager Jeff Luhnow contacted Kevin for an interview. They talked for about three hours, and Kevin told Mike afterwards that he thought it went well. Jeff Luhnow must have thought it went well, too: last December he hired Kevin to oversee the Astros’ pro scouting efforts. That includes comprehensive scouting of both Minor League and Major League players across the 30 teams, plus independent and foreign professional leagues, too. We are thrilled for Kevin, of course, and especially thrilled he took the time to contact us and invite us to today’s game. Batting practice, too! (I’ve never been on the field during batting practice, and I’m eager to eavesdrop on the players and coaches while they warm up). It’s hot and humid in Chicago this week. I don’t know exactly where we’ll be sitting during the game, but in any case, Whitney is staying home. I’m just not sure how White Sox superstar groundskeeper Roger Bossard might feel about having a dog with me out on the grass, if you know what I mean…!

My proof of heaven

August 23, 201325 CommentsPosted in blindness, Flo, Mike Knezovich, Uncategorized

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, Beni and  Sheelagh in 2007

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.

To our dear, wee Sheelagh

August 16, 201349 CommentsPosted in guest blog, Mike Knezovich, parenting a child with special needs, travel, Uncategorized
That's wee Sheelagh on the left, then our friend Jim Neill, Beth, and Beni. It was taken in August, 2011 in the picturesque Collioure, France.

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.

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.