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How would you dress if you couldn't see yourself in the mirror?

July 22, 201621 CommentsPosted in blindness, Blogroll, careers/jobs for people who are blind, Uncategorized

I feel good in this outfit, and my Seeing Eye dog Whitney likes the fur coat she is wearing, too.

I was 26 years old when I lost my sight. A Vietnam Veteran who was blinded in a military training accident was assigned to teach me how to cook.

A friend who visited me at Braille Jail (that’s what I called the facility I was sent to in order to learn new blind skills) told me what this teacher looked like. “That guy? He has long sideburns and long hair. Bell bottoms!” my friend said. “He looks like a rock and roller from the 70s!”

The year was 1985. I was horrified.

I started fidgeting with the buttons on my denim jumper, wiggling my toes against the flat cotton shoes on my feet. These clothes I’d bought when I could see would wear out sometime. What would I replace them with? Would I forever DRESS as if it were 1985?

We didn’t have much money back then, but my husband Mike saw to it from the start that I shop at the most expensive and exclusive clothing store in town. My first time there, I paraded out of the dressing room in a tight pair of leggings. The store owner gasped. “Oh, honey – you’ve got some big hips!” Now here was a woman I could trust.

I’ve never put on leggings again, but most of the clothing I wear comes from smaller boutique-type stores. I get to know the store owners and staff and trust them to be honest about what looks good on me –and what doesn’t.

Shopping online is cheaper, I know. A computer screen doesn’t allow a person to feel a piece of clothing, though, and I choose what I wear by how the fabric feels — and I feel — when I wear it.

People with disabilities get stared at. I can’t see the stares, but I sure can feel them. And as long as they’re watching, I want to look good.

Apparently, I do. That’s what people tell me, at least. And Without being able to look in a mirror and judge for myself, I have the luxury of believing them.

This post was published on the Easterseals National blog this week afterEasterseals Thrive hosted a Twitter chat about disability and fashion.

Mondays with Mike: Sean’s last night in town

July 18, 20166 CommentsPosted in Mike Knezovich, Mondays with Mike, Uncategorized

Regular readers know that Hackney’s is our local pub. We’re there enough that Ulrich Sandmeyer, of Sandmeyer’s Bookstore halfway down the street between our condo and Hack’s, calls it Beth’s office.

Where everybody knows our name.

Where everybody knows our name.

It’s a luxury of sorts to finish up a day of work and have a friendly place just a block away. Apart from the food and libations, one of the great things about having a local is that Cheers culture of people who know you, put up with you, stand by you, and are just there when you need to see some familiar faces. (Better yet than Cheers at capturing what can be good about a local is a book called The Tender Bar, by J.R. Moehringer.)

One thing that’s been especially gratifying is getting to know the staff. For as long as we’ve been going to Hackney’s, we’ve seen a stream of college-age and post-college kids come and go. Lots have been students at Columbia College at one time or another, or at other downtown schools like Robert Morris or DePaul.

These kids work very hard. Most are either going to school and working at Hack’s or have a second or third job. They belie the stereotype of the coddled millennial.

Since Beth and I are wont to sit at the bar—even when we are eating—we tend to get to know the bartenders better than the servers—though they’re all of the same good lot. And it’s a helluva lot of fun to watch them grow up before our eyes.

There’s been Billy, who left for what he called a “big boy” job. He’s now married and has two painfully cute children. And Stephen, who landed enough videography gigs to make it a full-time deal. Lynda and Jean left for greener pastures. Sarah became the general manager.

And just last night, we bid adieu to Sean, who’s about to embark on the kind of adventure that everyone in their twenties ought to have. He’s taking whatever fits in his car and driving toward Washington state, where a friend has said “come on down, you can hang out here.”

It was something of an ironic curtain call. So many of his fans showed up that he had to work his tail off to keep up. But he managed, and a good time was had by all.

Like all of the good young people at Hack’s that move on, Sean will be missed. But not forgotten. And we hope to sit with him on our side of the bar at his local, wherever that is, in the not too distant future.

Woebegone but not forgotten

July 17, 201616 CommentsPosted in careers/jobs for people who are blind, guest blog, memoir writing, radio, travel, Uncategorized

Our guest blogger John Craib-Cox is the proud father of a son and two grandchildren in London and a daughter and granddaughter here in Chicago. He signed up for a memoir-writing class shortly after his wife Tessa died unexpectedly on July 17, 2012. That was four years ago today. She was 67.

Today's guest blogger, John Craib-Cox.

Today’s guest blogger, John Craib-Cox.

Tessa Craib Cox was born in England and met John when she was on a graduate fellowship at New York’s Metropolitan Museum of Art in the 1970s. Young newlyweds John and Tessa moved to Chicago in 1974, the same year A Prairie Home Companion first aired. The poignant piece he read in class last week about Garrison Keillor’s final appearance as host of that show is a beautiful reflection on love, family, nostalgia and loss.

by John Craib-Cox

In 1974 Public Radio began to broadcast A Prairie Home Companion. At the time, with two small children and few satisfactory baby sitters, weekend evenings were spent in our apartment and this program became a welcome source of entertainment.

The host, Garrison Keillor, was roughly our ages, and had a familiar dry sense of humor and similar musical taste. This proved to be a winning combination. Friends also liked the weekly program and it provided many shared subjects for conversation.

Many of our friends had grown up, like me, in the Middle West and found Keillor’s Lake Wobegone reminiscences struck a familiar regional note. Our children liked the ragtime music heard on the broadcasts. They would dance whenever the band played something bouncy and up tempo.

Throughout the ’70s we weekly would listen together to Garrison Keillor on the radio, and whenever he was at Ravinia Park we would be in attendance. Keillor had a wonderful sense of the absurd. As they grew, our children would laugh whenever he referred to the freeze-dried mouse morsels obtainable at Bertha’s Kitty Boutique.

After several years the Prairie Home Companion ritual faded in favor of other activities. Then Garrison Keillor left for New York. It was never the same again. Keillor’s first New York program opening monologue opined that it was rather odd to be starting to broadcast from a city where most parked automobiles had a dashboard sign saying “No radio.” That thought wasn’t enough to hold us, however. We ceased to tune in, save on the very rare occasions when we were driving and could find nothing else to listen to.

A wave of publicity alerted me to the impending final program. I made certain to be at home to listen to the broadcast. With the exception of the telephone call from President Obama it was more or less the familiar program that we had started listening to in the 1970s. This final broadcast became a receptive sponge for melancholic feelings contrasting the unchanging nature of the program over 42 years and the totally changed nature of my life in the 42 years since the first broadcast.

As it drifted into the final half hour, the clouds of melancholy became thicker and I became sadder. Suddenly the telephone rang. A friend calling from Italy. I was brought back into the present, making plans for my August trip to London.

One thing I have in common with new British Prime Minister Theresa May

July 13, 201626 CommentsPosted in blindness, politics, technology for people who are blind, Uncategorized

She’s a woman, we’re about the same age, and we’re both survivors. The most significant thing I have in common with Theresa May, though? It’s actually one thing we both would rather do without: the new British Prime Minister and I have Type 1 diabetes.

Theresa May, the UK's new Prime Minister.

Theresa May, the UK’s new Prime Minister.

Millions of people have diabetes. Only a small fraction of us have Type 1, though. That’s the one that is also known as juvenile diabetes. I was diagnosed with Type 1 at age seven. Prime Minister May was diagnosed in 2013. This BBC story about her last Tuesday demonstrates just how complicated it can be to fully understand the chronic disease:

She has rarely opened up about her private life although she revealed in 2013 that she had been diagnosed with Type 1 diabetes and would require insulin injections twice a day for the rest of her life — something she says she had come to terms with and which would not affect her career.

I looked up an interview where she mentioned her diagnosis. “I’m on an insulin regime so I’m injecting insulin four times a day,” she said (the emphasis on the number four is mine). In the interview She also explained that she takes additional injections when she eats extra carbs or her blood sugar tests run high.

Okay, I hear you. It’s just a number. What’s the difference between two, and say, four? Or more? Trust me, it’s a tremendous difference when you’re the one taking all those injections. Not to mention the blood test you need to take throughout the day to determine if you got the amount of insulin right the last time you took a shot. Or whether you still need to take more

Type 1 diabetes — the kind Theresa and I have — comprises only 5 percent to 10 percent of diabetes cases. Type I diabetics have to inject insulin –pills won’t work. In Type 1, the immune system destroys the cells in the pancreas that make insulin. Researchers have not yet been able to figure out why that happens, but they do know it has nothing to do with the person’s behavior.

Ninety to ninety-five per cent of the people who have diabetes have Type II, and in those cases doctors often prescribe exercise and weight reduction. A number of people I know have been “cured” of Type 2 by exercising and losing weight. Type 1 is a whole different story. Prime Minister May and I could run, jump, swim, skip rope, lift weights and do cartwheels from sun-up to sundown (okay, truth is, I could never do a cartwheel, even when I was a kid, but you get the picture) and we could shrink down to a size 3 dress, but we’d still need to inject insulin. That’s because, no matter how much we weigh, those of us with Type 1 produce no insulin. None. Nada.

And so, Theresa and I — along with millions around the world who have juvenile diabetes — take insulin every time we eat. We test our blood several times a day to make sure glucose levels are within range. We balance meals, snacks, exercise and medication to prevent diabetes complications, which can include kidney failure, amputations, and … blindness.

Fast-acting insulins, insulin pumps and home blood monitors were not available 50 years ago when I was diagnosed. I took shots, avoided sugar, and tested my urine at home from time to time to get a guess at what my sugar levels were. I was advised not to have children, warned of the likelihood of complications and told I likely wouldn’t live past age thirty.

No surprise that throughout my childhood I saw my juvenile diabetes as a weakness. In early adulthood, though, I decided to fight back. I studied the disease, bought one of those new-fangled home glucose monitoring machines, and with my husband Mike’s help and support we started testing my blood regularly. I became more vigilant about exercise, walking everywhere and swimming every other day and closely monitoring how much that exercise brought my blood sugars down. I figured out how much my favorite foods brought my blood sugars up, too, and now I inject that new fast-acting insulin six, seven sometimes eight times a day to balance the meals and snacks I like to eat.

A new blood monitor at home talks — it calls my numbers out loud, so Mike doesn’t have to be around every time I want to check my sugar levels. Controlling my blood sugar keeps my weight at a steady level and gives me good overall health. Best of all: It makes me feel good.

Today’s appointment of Theresa May as UK’s new Prime Minister makes me feel good, too. Her appointment gives me even more reason to think that our Type I diabetes is not a weakness after all. It’s a strength. Living well with the disease teaches us perseverance, self-control, discipline and resourcefulness. Coordinating meals with insulin injections forces us to think ahead and make good decisions. Here in America we’ll be making a decision soon about a new leader. I hope we choose one with characteristics like those of my fellow Type I diabetic. Prime Minister May shows good judgment and is careful about her personal management. Maybe it’s just me, but it sure seems having control of yourself is a good place to start when it comes to taking control of a country.

Mondays with Mike: I must be in the front row

July 11, 20167 CommentsPosted in baseball, Mike Knezovich, Mondays with Mike, Uncategorized

Whew. I’m tired.

Beth and I traveled to Oconomowoc, Wisconsin Saturday afternoon—a strategic location for our long awaited trip with our son Gus and his Aunt Bev to a Milwaukee Brewers game.

We weren't in the front row but we had good seats in right field. Thanks Aunt Bev, for the phot.

We weren’t in the front row but we had good seats in right field. Thanks Aunt Bev, for the photo.

But not just any game. At this game, every single attendee received an alarm clock. But not just any alarm clock: A Bob Uecker alarm clock.

Uecker is known for a lot of things, among them being a comically bad Major League Baseball player—he did deadpan bits on how bad that made him a favorite on late night TV. He had a role (as a dad who is also a sportscaster/writer) in a popular 1980s sitcom called Mr. Belvedere. He made the unforgettable “I must be in the front row” commercial for Miller Lite. And, playing the role of the Cleveland Indians radio announcer in the movie Major League, his understated and sarcastic call, “Just a bit outside,” on a wildly wild pitch lives on.

Easily forgotten, however—or simply not known to those who’ve not had the pleasure—he’s an absolutely fantastic baseball radio announcer. There can only be one Vin Scully, but in my view, Uecker’s a close second. Uecker’s home run call typically goes like this:

Get up, get up, get outta here!

Uecker on Johnny Carson, 1982. He's been a staple of late night.

Uecker on Johnny Carson, 1982. He’s been a staple of late night.

We had a great time, but the driving to Watertown to pick up Gus, and then to Miller Park for the game, then back to Watertown, then back to Milwaukee for the night—well, it wore this guy out. Not to mention remembering how to get Gus in and out of the wheelchair and in and out of the rented car without ending up in traction.

I’m happy to say, I haven’t lost my stuff on that fathering front.

But boy am I tired. Sure am glad I have this to wake up to tomorrow morning.

You have to watch, and listen, to believe.

You have to watch, and listen, to believe. (Click for a taste.)