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You read that out loud in class?

December 13, 201522 CommentsPosted in careers/jobs for people who are blind, guest blog, memoir writing, Uncategorized
Regan-Burke

That’s Regan, today’s guest blogger, peaking out of her hood at a Chicago bus stop.

It was a lucky day for me when Regan Burke turned up for one of my memoir-writing classes. A civil rights activist, Regan was a White House staffer during the Clinton presidency and has colorful – and moving – stories to tell. She files away unusual words she hears and cleverly shoehorns one or two of them into each essay – you’ll find one here in her guest post about the value of honesty in memoir-writing.

There’s a Lacuna in My Story

by Regan Burke

Sometimes I email the essays I write for my memoir classes to a good friend.

She tends to find my work imprudent and irresponsible.

”You read that aloud in class?” she’ll ask. “Yep,” I answer. “I did.”

I have a strong motivation for writing the truth. A book by Dr. Howard Schubiner called Unlearn Your Pain caught my eye a few years ago. Dr. Schubiner treats chronic pain psychologically through fearless writing, and after completing his prescribed writing exercises, I joined a memoir-writing class.

I knew assignments and deadlines would encourage me to delve further into the unfinished emotions that may be the genesis of my pain. After six months of writing, pain from my severe spinal canal stenosis disappeared completely.

That’s not the end of the story, though. I still have arthritis and fibromyalgia pain that can be mollified by narcotics or surgery. Instead, I choose bibliotherapy. Writing is my journey to a higher quality of life.

In conversations with other memoir-writers I find some of us worry we’ll run out of new stories to write. The weekly assignments help, and often the prompt brings some emotionally painful incident from my past to light. I don’t always want to write about these first thoughts consequences of my alcoholism and drug addiction, mean sisters, non-parenting mother and father and my own non-parenting. However, since I have proof that bibliotherapy works, it is essential to force myself to sit with my MacBook and coffee plunking out stories.

Some of my writing classmates have asked me how I can be so honest in front of our groups. Writers in class were once anonymous faces, but as happens in the passage of familiar time, we are now interesting companions curious to hear each others’ next 500-word installment. I have trusted them.

Don’t get me wrong. If all my short memoirs were put in chronological order, a reader of the work might wonder if something was missing. “There’s a lacuna in your story,” I can hear my friend say over coffee. “What about THE MEN?”

No matter how many weekly 500-word memoirs I turn out, there will always be holes, i.e. THE MEN. I will never be honest about the men in my life, even the dead ones. This may prolong or even deepen pain in my knee joints but there you have it. No men stories.

I considered starting my own 12-step-type memoir-writing group where we adhere to honesty and confidentiality. But if I’m not writing about THE MEN in one group, I’m not going to in another. I don’t trust my own resilience to withstand the anticipated embarrassment, shame or judgments.

The class Beth teaches is on break now but my other memoir-writing class led by Linda Miller at the Center for Life and Learning continues. Our assignment this week is to write a “big story.” Obviously my only “big story” is THE MEN. The hole goes unfilled. And as I write this, I drink coffee and ice my knees.

Disability isn't always the most interesting thing

December 11, 201518 CommentsPosted in blindness, radio, Uncategorized

My first opera experience last night was a huge success, and while I work on paring that grand experience down into a piece short enough to publish here, as long as we’re on an orchestral bent, how about I share some thoughts about Steve Inskeep’s interview of Itzhak Perlman on NPR’s Morning Edition a couple weeks ago.Itsaac-Perlman-hqdefaultI’ve heard Itzhak Perlman perform on the radio and on television, but without being able to see the renowned violinist on stage, I had no idea he had a disability until I heard that radio interview and learned that Perlman contracted polio when he was 4 years old. He’s used crutches ever since, and when he was asked about his disability during the NPR interview, he said it has nothing to do with his performance. “I can’t walk very well, but I’m not onstage to do walking,” he told NPR’s Steve Inskeep. “I’m on the stage to play.”

I thought it was a great answer. Steve Inskeep, however, kept pushing with follow-up questions: Does it make any difference to you that you sit rather than stand during solos? Did polio limit your options, and that’s why you gravitated to playing the violin? So you’re telling me that people expected no less of you because you couldn’t walk?

I know that those of us who have disabilities are in the minority, and its human nature to be curious about how and why we do the things we do. But isn’t one or two questions enough? Before asking one of his many, many disability-related questions during the interview, Inskeep acknowledged that the particular one he was about to ask would be “surely an unanswerable question” and then went on to ask it anyway. “Would you have been the same musician that you are had you not been stricken with polio at a very young age?” Perlman’s answer to the surely unanswerable question was just another example of what a gracious and self-aware man he is:

“I think yes. You know, a lot of people like to think that polio was an inspiration in what I do. I think that music has to do with what kind of passion do you have. If I was destined to be a musician, it would have happened.”

So hmm. Maybe the reason I didn’t know that Itzhak Perlman had a disability has nothing to do with the fact that I can’t see him. It’s just that his disability is not the most important – or most interesting — thing about him.

What's Opera, Doc?

December 9, 201525 CommentsPosted in blindness, Braille, guide dogs, Seeing Eye dogs, technology for people who are blind, Uncategorized

The opera Bel Canto (based on Ann Patchett’s novel by the same name) had its world Premiere at Chicago’s Lyric Opera Monday night, and I’m going to tomorrow night’s performance. It will be the first time ever that I’ve attended an opera.

When I was a kid, the only opera I knew was the Merrie Melodies cartoon one. you know, the one where Strauss music follows Viking Elmer Fudd as he bellows “Kill the wabbit! Kill the wabbit!” and chases Bugs Bunny? It still makes me smile, just thinking about it.

I ditched a day of high school for the movie premiere of The Who’s Tommy, and I played the double-album to Jesus Christ Superstar at high volume in my basement bedroom, but I never did see a rock opera live on stage. Opera was not on my radar in college, and after I lost my sight I figured that with all the over-the-top costumes and staging and lyrics in foreign languages, opera would be forever off my list. But then came a sequence of events more outlandish than most opera plots:

  1. Ann Patchett, one of my favorite authors and a woman who didn’t know a thing about opera before, came out with a bestseller with a world-renowned soprano as the main character.
  2. Mike and I moved to Chicago.
  3. Real-life renowned soprano Renee Fleming signed on as the Lyric Opera of Chicago’s creative consultant.
  4. Ms. Fleming saw to it that the Lyric obtain rights to the novel Bel Canto.
  5. And now, tomorrow night, this blind woman will debut in the Lyric’s audience.


The Lyric Opera’s trailer for Bel Canto

I’ve been preparing for my debut ever since I heard that the opera Bel Canto would be opening here this year. I started by rereading the book, then I went to the Harold Washington Library Center in Chicago with friends a few weeks ago to hear Ann Patchett and Renee Fleming talk about the making of the opera, and then last week I went to the Lyric with a friend to hear the men behind-the-scenes give a panel about all the work involved in developing a new opera for the stage. Thanks to them, I now know what a “librettist” does.

Still, I wasn’t sure I’d attend the opera. Tickets can be pricey, and not only would I miss out on the costumes and the staging, but without being able to read the subtitles (this opera is sung in nine, count them, nine different languages) I wouldn’t understand most of the dialogue. I’m pretty game for trying new things. Experience has shown me, however, that at times overreaching can leave me feeling worse about my blindness than staying home. Maybe going to an opera would be an overreach.

Eyebrows up! My positive experiences with other Chicago cultural institutions in celebration of the 25th anniversary of the Americans with Disabilities Act this year spurred me on. I wrote Nora O’Malley, Facility Operations Manager for the Lyric Opera of Chicago with my questions about accessibility — namely, the subtitles. “I am guessing it is unconventional to ask for the libretto of a brand new opera ahead of time,” I wrote. “But if I promised not to share it with anyone else, might you find a way to email it to me before the opera? That way I could use my talking computer to read it before I come…”

Nora wrote back write away. Turns out she remembered me from a talk I’d given in September at Greater Together, a cultural accessibility summit here in Chicago. “A Word version of the program is attached,” she wrote. “We’ll also have Braille programs available if you’re interested.” She asked where I’d be sitting and said they’d find a way to accommodate my Seeing Eye dog Whitney if I bring her. “If you do plan on bringing her, you can notify me via email, call me or simply ask for the House Manager when you arrive and we’ll make it work.” The program she attached outlines the plot, and before I head to the Civic Opera House I’ll read through it to see how the libretto (did I mention I know what that word means now?) might differ from the original book version

As for the subtitles, turns out I may be able to hear them at tomorrow night’s performance. “Lastly, the December 10th performance of Bel Canto is our Audio Described performance,” Nora wrote. “Would you be interested in listening in?” I am! I will! Time to dig out my ball gown and opera-length gloves – I’m off to the opera.

Mondays with Mike: My home town

December 7, 20156 CommentsPosted in Mike Knezovich, Mondays with Mike, politics, travel, Uncategorized

As Beth wrote in her Sunday post, we spent a wonderful weekend with our friend Lydia, who moved to Cambridge to take a job with Harvard Magazine. Lydia’s a gifted writer and a solid reporter to boot—she just won an award for this article on the human biome that she wrote for the University of Chicago magazine, her previous employer. She’s still doing long-form stuff, but at her new gig at Harvard she also gets to write about Harvard’s highly ranked women’s hockey team. Lydia’s a hockey player herself, and teaches little kids to skate, so it’s a labor of love and nice change of pace for her.

An aerial view of Harvard Square.

An aerial view of Harvard Square.

Beth and I stayed in Cambridge, right on Harvard Square. I’ve been to Boston proper several times, but this was the first time I’d stepped foot in Cambridge. It was in many ways exactly what I expected. Harvard Yard, small by Big Ten standards, was just as Ivyish as I’d imagined. And there were the nearby neighborhoods, with big old houses and tree-lined streets and red-brick sidewalks that were buckled by tree roots. (Let the record show, however: It’s no Madison. I’m a University of Illinois graduate, and nothing beats our Quadrangle. But Madison, Wisconsin, is in a league of its own as far as college towns go.)

In other ways, I was a little surprised. Cambridge is more urban than I’d guessed, and there’s a lot of traffic and bustle mixed in with all the ivy quaintness. And I was a little surprised that it seemed like, well, lots of other college and university towns. Not sure what I expected—that Harvard students would look different? Well, they don’t. I mean, there’s clearly a lot of money in that town—you can sense it the same way you do in say, D.C. But overall, and I’m kind of happy to say this, it seemed like just a nice college town.

All in all, it was a splendid visit. Our friend is getting along well. But she made clear she misses Chicago, dearly. She’s actually from the South (and no Chicagoans, I don’t mean Kankakee), but between journalism school at Northwestern, community newspapering in the South Loop and her time at the University of Chicago, the city seems to have gotten into her blood.

When I first moved here, I wasn’t sure I could stand the sirens and the screeching of the L and all the construction noise. And it never gets really dark because of all the light pollution. Wide open spaces are hard to come by. Randy Newman’s got a song called “I Love L.A.,” in which he extols the virtues of Southern California, and explains why he wouldn’t live in some other places, including Chicago—here’s a line:

“Let’s leave Chicago to the Eskimos, 

that town’s a little too rugged, for you and me babe.”

My first year or two here, I thought maybe it was a little too rugged. Gradually, something has changed. I think it’s perhaps that I’ve embraced the rugged, and rugged is what I love about this place. It is also, at times, what I hate about it. It’s goodness and awfulness seem to both be bald-faced. Phenomenal architecture and the symphony and art—all this tremendous beauty only miles from the Laquan MacDonald shooting. They might as well be separate universes. And citizens seem to be addicted to boss-system politics at the expense of transparent democracy—we must be, we keep voting for the monsters.

But, walking home from the Orange Line L stop on our way home Sunday, we passed the Harold Washington Library. Which reminded me that there are good people chipping away against the awfulness. And sometimes they win out. Like the many quiet heroes who stayed on that MacDonald case and made sure it didn’t go away.

Good striving against evil. Always. Right here in Chicago.

Does she get an organ donor card now?

December 6, 20156 CommentsPosted in baseball, Mike Knezovich, travel, Uncategorized

Retired White Sox organist Nancy Faust donated her own personal Hammond organ to White Sox Charities for their holiday garage sale, which was held yesterday. Nancy and I have become friends over the years, and she told Mike and me about her “organ donation” a few weeks ago when we joined her along with her husband Joe Jenkins and their son Eric for happy hour to hear Chris Foreman on the Green Mill Jazz Club’s Hammond B3.

Me and Mike with Nancy Faust at the Green Mill. Nancy showed Mike her World Series ring--and yes, he did eventually let go of it.

Me and Mike with Nancy Faust at the Green Mill. Nancy showed Mike her World Series ring–and yes, he did eventually let go of it.

“The one I’m donating is a Hammond Elegante,” she said, assuring me that she and Joe still own a number of organs so she’ll have a way to play at home when she gets the urge. Nancy’s mother was a professional musician, and Nancy’s father owned a business renting organs to music clubs, bars and civic groups in Chicago when Nancy was growing up. Her husband Joe eventually took over that business, and he’s retired now, too. “I was lucky to be born with perfect pitch,” she told me. “I’ve been playing by ear ever since I was a little girl,” To prove her point, she turned toward the Hammond B3 playing behind us. “Like right now,” she said. “He’s playing in the key of F.”

We all had a fantastic time together at the Green Mill, and back home I looked up Nancy’s donation on an MLB site:

This organ is a Hammond Elegante Model 340100. Nancy was the White Sox organist for four decades from 1970 – 2010. This organ is Nancy’s personal organ from her home. She has autographed the music rack.

Hmm. The wheels started turning. I can play piano. Could I play the organ? Even if I couldn’t play it, wouldn’t it be cool to own one? And wouldn’t it be especially cool if it had once belonged to White Sox organist Nancy Faust? But wait, there’s more: the money spent on the organ all goes to charity!

The MLB site said the opening bid would be $1000 and gave the organ’s dimensions as 53 inches tall and 55 inches wide. That wide? Almost six feet, right? We already have a grand piano, an upright string bass, a guitar, an accordion, drums and various percussion instruments squeezed into our living room. Our apartment really isn’t big enough for a Hammond organ. But we could always get rid of the couch, right?

About the time I was getting serious about this — and Mike was getting nervous — we were happily distracted by a visit to our dear friend Lydia. She moved away from Chicago a few months ago to take a job writing for the Harvard Alumni Magazine. It’s a great job in a very cool town. We knew we’d miss her, though, so we made arrangements long ago to fly to Boston to spend these past couple days with her in Cambridge. We walked and laughed and hung out and shared stories and ate lots and lots of oysters. To Mike’s great relief, all thoughts of bidding on the organ went out the window, and by the time we landed back at Midway, the bidding had closed.

This just in: MLB reports that “the organ, put up for sale by the Chicago White Sox during their annual holiday sale for charity on Saturday, was purchased by Josh Kantor, the popular organist for the Boston Red Sox at Fenway Park.” Fantastic to know it will be quite literally, in good hands.

  • Hammond Elegante Model 340100: $1000+.
  • Friendships with Lydia and Nancy: Priceless.

And if you want to see and hear Nancy talk about her donation, check out the video clip below:
[mlbvideo id=”533078483″ width=”400″ height=”224″ /]