Hear no evil, see no evil

Heard the one about the deaf girl showing up at the Blind woman’s doorstep?

In our case, this was not a joke. I’m trying to slowly get back into the swing of things, so I stuck with a plan to have 20-plus students from a disability studies class at DePaul University come visit last Thursday. My memoir Long Time, No See is required reading for this “Explore Chicago” class, and students hop on the Red Line from Lincoln Park every semester to come see where/how I live and ask questions about the book. A story in DePaul Magazine about the teacher, Karen Meyer, explains:

She requires her students to draw from an extensive list of books, articles and films-including familiar titles such as “To Kill a Mockingbird,” ”Sea Biscuit” and “Frieda” — which tell stories about people with disabilities.

“They tell me they pick movies they’ve seen before, but after they see it with a different understanding, they have a completely different perspective. They’re looking for themes that they’ve never looked for before,” she says. ”We meet the author of ‘Long Time, No See’-we go to her house,” says Meyer, who is friends with writer Beth Finke.

Mike has been reluctant to leave me at home alone since my surgery. I’d be safe with Karen Meyer and her class here, though, so he was going to take advantage of that time and head to the gym. Our doorman called while Mike was getting his gym bag together. One student was here early, and he was sending her up to our apartment. The student never knocked on our door, and when Mike took off to leave he saw her sitting on the floor in the hallway, looking at her phone. She pantomimed to him, and Mike understood right away. “Are you deaf?” he asked. She read his lips and nodded yes.

Most of the students in this Explore Chicago class are average kids who want to learn about disabilities. This is the first time one of them had a hearing impairment, and mixing a person who is blind with a person who is deaf can be, well…awkward. We disabled types are a resourceful bunch, though. I was confident we’d manage. I let Mike usher our guest to a seat at the breakfast bar, and I shooed him out the door.

The student was probably perfectly happy looking at her phone while she waited, but I couldn’t see to know that, and if I asked, she wouldn’t hear me. What to do? I gave her a copy of my children’s book Hanni and Beth: Safe & Sound and headed to my room to change clothes.

I have a special clipboard that has a line guide. I used it to leave a note for Carla.

I heard her thumbing through the pages for a while, but by the time I returned to the kitchen, the page-thumbing had stopped. I still had some things to do to get ready, but I didn’t want our guest to feel like I’d abandoned her. Eureka! My clipboard!

I’d also hoped to get some quick email messages out when I’d finished in the bathroom, but with a guest sitting in the kitchen alone, I didn’t feel right hiding away in my office. Wait! My talking computer is a laptop. I could bring it into the kitchen! I started typing there , and it dawned on me. I used my pointer finger to call my guest over to the computer keyboard, then pointed at the screen. . “This is how I type,” I wrote. “My computer talks. What is your name? She came to the keyboard and started typing. C-a-r-l-a.

We were in business! It was like TTD, except Carla and I were in the same room. I’d type, she’d read the question and answer. I’d manipulate the keys on my talking laptop to hear what she’d typed, and type out a response. By the time the other students finally arrived (they’d been waiting for Carla downstairs, of course!) I’d learned she lives in Rogers Park, she has one sister who is  only two years old, and sometimes it gets tiring chasing her around the house. “Will you sign my book for me?” she wrote, placing a copy of Long Time, No See in my hand. I signed it in print and in Braille. “To my new friend Carla.”

A sign language interpreter had arrived along with the group of students and stood next to me as I gave my presentation. The only thing that might have tipped them off that I had open-heart surgery weeks ago was seeing the beginning of a scar at my neck. That, and my request to sit on the piano bench rather than stand as I spoke to them. Based on last week’s success, I’m keeping a commitment to speak at a retirement community tomorrow on the benefits of memoir-writing. This Friday Mike and I are attending a birthday party for one of my favorite 80-year-olds, and next Monday I have appointments with the cardiologists who saved my life last month. After all that? I think we’ll rest.

Where Whitney was

People have been asking if Whitney stayed with me while I was in the hospital last week.

She did not.

That’s Greg with his and Lois’ dogs Gamma and Griffin.

Legally, I could have had her in the room with me — Title III of the Americans with Disabilities Act allows those of us who rely on service dogs to have them along in hospital rooms. All bets are off, however, if the dog constitutes either a “fundamental alteration of goods and services available for all” or a “direct threat to safety.” So while Whitney could have legally sat at my bedside once I was recovering in a regular hospital room, she would not have been allowed while I was in ICU. She wouldn’t have been with me in any sterile rooms (such as the operating room). Certain areas of the emergency room/departments would have been forbidden, and she wouldn’t have been able to ride in the ambulance with me to the hospital in the first place — even Mike had to follow behind in a cab.

Hospital staff cannot be made responsible for caring for a service dog while a patient with a disability is in the hospital, and I’m afraid my case left doctors and nurses with bigger problems to solve than figuring out when and where to take Whitney out to pee. The truth is, we never even thought of asking my Seeing Eye dog to sit still and behave at my hospital bedside while I recovered. It wouldn’t have been fair to an energetic ball of fur like her. I didn’t need her to guide me anywhere, and she would have been bored out of her mind.

Our dear friend Greg Schafer rushed to the waiting room after cardiologists recommended Mike call a friend to be there with him while I was being operated on. After surgery was over, Greg offered to stop by our apartment and fetch Whitney, take her home with with him for a few days. Greg and his wife Lois have a huge yard with two dogs and all sorts of other critters. Whitney spent the weekend there tracking deer and enjoying long walks while Mike spent time helping me recover at Northwestern Hospital.

Greg and Lois returned Whitney to Chicago on Sunday. After getting her settled in our apartment, they stopped by the hospital to regale Mike and me with details of ways Whitney spent time with their own beautiful dogs, Griffin and Gamma. Their stories really cheered me up. Whitney was there to greet Mike at home that night, and she was at the door waiting for me when I finally returned home Tuesday. A joyful reunion for sure.

That’s Whit wearing her Gentle Leader.

Surgeons had to cut my sternum to perform open-heart surgery, and until that bone heals I can’t let Whitney wear a harness and pull me. Trainers at the Seeing eye have dealt with graduates who have had open-heart surgery before. Until my sternum heals, they recommend I have Whitney wear a Gentle Leader, a collar designed to gently discourage dogs from pulling while walking on a leash. Mike comes along on my walks with Whitney, and each day the length of our cardio walks expands a minute or two. Neighbors are getting used to seeing me sauntering down the block with Whitney on my left, Mike on my right: a heart-healthy sandwich.

Friends have been volunteering to take Whitney on faster walks every day too, to keep her in shape. Others fill in for Mike when he isn’t available to take me on the slower-paced walks. Between these volunteer walkers, the friend who brought her violin over to perform for me, the ones who have sent or delivered food, friends who have sent cards and music CDs and concert tickets and audio books and get-well bracelets and a lounging gown and body lotion and flowers and gift cards and whew, you’ve all been so kind I need to stop here to take a breath before I go on: my lungs aren’t back to normal quite yet!

Pause.

Okay, I’m back. Thanks to all of those friends and all of you blog readers who have left such encouraging comments here on the blog, I feel loved, and I feel grateful. I’m alive, and I’m healing. And I’m looking forward to getting on the road again with Whitney.

Miracle girl lives!

Wedding day, July 28, 1984. Thanks to some terrific people, me and the miracle girl can look forward to another anniversary. (Photo by Rick Amodt.)

Hello everyone. It’s still me filling in for Beth. She’s home — from Vermont, anyway — but a funny thing happened on her way back to the blog. Many of you already know the story — for those who are reading it for the first time, apologies for the scare. But Beth and I pieced together the following account because we thought you’d want to know. We’re still sorting some things out, so don’t be surprised if we don’t respond right away. Thank you for reading—Mike

Beth had emergency open-heart surgery Thursday morning, and she is OK. More than OK. She’s recovering remarkably well, crazy remarkably well, at Northwestern Memorial Hospital. I just left her room. She is walking the hallways, with a guide, and still attached to surgical drains.

The docs and staff who got her to this point have been streaming through over the past couple days and they all come through Beth’s hospital room door saying, in a tone of amazement, “I just wanted to lay eyes on the miracle girl.”

For the past two weeks, starting when Beth was still in Vermont, she had been experiencing infrequent burning sensations, followed by pain in her chest. Our friend Debbie Wood had a heart attack in her 40s. Debbie works at Northwestern University and by chance was involved in the design project Beth worked on there last month. During that time, Debbie reminded Beth to see a doctor if she ever had any chest pain. “Women tend to ignore them,” she warned. “It could be serious.”

Friends from New Hampshire drove to Vermont and brought Beth to the Burlington airport and she flew home, earlier than planned, to me. At home, her pains seemed to increase in frequency. But they didn’t fit the description of angina – no swelling in the ankles, no lightheadedness, and the pain didn’t spread into her arms or back. Rather than go to the ER, we had our endocrinologist get Beth in for an appointment for a stress test/echocardiogram last Wednesday afternoon at a downtown cardiologist’s office.

That’s when the sh-t hit the fan. Beth had what was technically a heart attack while she was on the treadmill. A Chicago EMS crew rushed Beth to the Northwestern Emergency Room in an ambulance. Followed by me in a cab.

Her angiogram the next morning showed, against all reasonable expectations for someone who’d been diabetic 47 years, that Beth’s arteries were clear. When the cardiologist came from the cardiac catheterization lab to brief me, she said, “Dude, I hope my arteries are that clean when I’m 54.” Which sounded like good news. Except it still left them not knowing what the problem was. And that’s when Beth’s heart went into fibrillation. They had to shock it back into rhythm.  No time to spare now. No decision , either. Open heart surgery.

A dozen staff frantically prepped her for surgery, like a scene out of House. When the anesthesiologist came with release papers for me to sign, and just before they wheeled her away, he said, “ She’s unstable. We’re going to do the best we can do.”

It was only on the operating table that they solved the puzzle — why she had been experiencing chest pains over the past couple weeks. We worried that it had something to do with that staph infection she’d gotten back in Vermont. Or coronary artery disease, which diabetics are more susceptible to than the general population. But no. They’d found — and removed — three benign tumors on Beth’s aortic valve. Such tumors are uncommon. But Beth was, as is her wont, one-of-a-kind. In the surgeon’s words, “I’ve done 10,000 operations and I’ll tell you — one of these tumors was the biggest I’ve ever seen. It’s more than a centimeter.”

He explained that the tumors flapped when Beth’s valve opened and closed. And one of them, the big SOB tumor, intermittently cut off blood flow to Beth’s heart. Leaving her with a burning sensation followed by pain in her chest.

And so, through the combination of some good decisions, some absolutely terrific, wonderful, heroic medical staff at Northwestern Hospital, the good wishes and support of our wonderful friends and family, and, some simple good luck, Beth will be coming home to me again early this week.

Beth will be coming home to the blog eventually, too, and I probably will do a post or two on the subject. There are people to thank, wonderful friends, family members, and complete strangers. And probably a lot of thoughts to be sorted out via writing.

Until then, please, take care of yourselves, and each other.

Thanks to the National Endowment for the Arts

Hi folks–it’s still Mike here, Beth will be back on the job soon. Meantime, thought I’d share a letter of appreciation she wrote to the National Endowment for the Arts, which funded her stay at the Vermont Studio Center — it gives a pretty nice summary of her time there. 

April 19, 2013

That’s us in Johnson, Vt., just outside my studio. Photo by Susie Cronin.

Dear National Endowment for the Arts,

I am writing from the Vermont Studio Center (VSC) to thank you for awarding me a Creative Access fellowship. My Seeing Eye dog Whitney and I have been here a month now, and it’s been a privilege to share ideas with the 50 other poets, writers and visual artists who have come here from all over the world to work on their own projects.

It has also been a privilege to devote time to my writing in the quiet living and studio space the Vermont Studio Center provides. I take breaks from time to time, too: three times a day my clever three-year-old Labrador/Golden Retriever Whitney leads me down a path from our writing studio, over a river, across a highway, and up to the Red Mill building for meals. Trust me, the chef and his staff here make it well worth the journey! Sharing those lovely meals with Vermont Studio Center staff and resident poets and visual artists is a joy, and listening to their stories has expanded my appreciation for the arts.

Vermont Studio Center runs an ongoing arts program with Johnson Elementary School, and Whitney and I spent a lively afternoon there sharing my children’s book and answering questions about writing and what it’s like to be blind and work with a guide dog. VSC also sponsors lectures by residents for the community, and their reading resident night gave me an opportunity to try out new assistive technology with a friendly audience. The technology worked, and that success will encourage me to try it out at the talks I give at libraries, schools and other civic organizations when I get back to Chicago.

I lost my sight when I was 26 years old and took to writing after that. Over the years hard work, supportive friends and family, and the passage of the Americans with Disabilities Act have combined to help me create a busy, fulfilling life.

I’ve been fortunate enough to have two books published, I have a part-time job moderating a blog for Easter Seals Headquarters in Chicago, I write and record essays for Chicago Public Radio, I speak at schools and conferences about blindness and guide dogs, and I teach three memoir-writing classes for Chicago senior citizens every week.

I’ve been thinking about writing a book about all I’ve learned from the writers in these classes, and now, thanks to this Creative Access fellowship from the National Endowment for the Arts, I’ve started writing that book. In one month at the Vermont Studio Center I’ve accomplished far more than I ever could have in my busy life in Chicago, and I’ve developed some good writing habits I plan to take home with me as well.

It has been a real privilege spending every day here in a quiet studio space. I am composing this note from my usual perch here: a cozy chair right by the window. From time to time I take a break, turn off my talking computer and open the window so Whitney and I can stick our noses out and enjoy the fresh air and listen to the river rush by outside. I’m black and blue from pinching myself so much.

Thank you, National Endowment for the Arts, for awarding me the Creative Access fellowship. Look for a copy of my new book in the mail once it gets published!

Yours,

Beth Finke

 

Whitney and Beth (and Hanni), Safe and Sound

Beth and Whit have settled into a routine up at the Vermont Studio Center.

Hi all — it’s still Mike here. Beth’s taking this work retreat seriously, staying offline as much as she can — but the short of it is, all is well. That staph infection that put a scare into us has passed, thanks to some attentive and caring folks up in Johnson, Vt. at the Vermont Studio Center, and to the the good people at Copley Hospital.Beth spent two nights at Copley, and so did Whitney — which presented a little bit of a logistical challenge when it came to taking Whitney out for “park time.” Well, the hospital staff rose to the occasion. They took Whitney out and played with her while Beth stayed attached to IV pole. And Beth and her publisher — Francine Poppo-Rich at Blue Marlin Publications — thanked them by shipping copies of “Hanni & Beth, Safe and Sound” to all the caring people who helped Beth and Whitney.

One of them — Penny Hester — took care of Whitney for an hour and a half while Beth was in the MRI tube (they were checking to be sure the infection had not spread to muscle and joint tissue). Penny is a speech/language pathologist. After she received her copy of the book, she wrote Beth a very thoughtful note — turns out Penny has a therapy dog that helps with some of her patients:

Dear Beth,

You have no idea how much it meant to me to receive your book. I used it with a patient the next day who had no idea of what being “blind” meant. With limited words he would close his eyes and point to the book-“no see Beau.” Beau is my pet therapy dog and Hanni looks very much like my Beau, in the beautifully illustrated pictures of  your book. Thank you for giving me an opportunity to open his world to a new concept.

That Hanni. Even in retirement, she’s winning friends. So is Whitney — though she’s doing it a little differently…Penny sums up Whitney’s goofball personality pretty well:

I found your sweet, clowning companion an absolute joy. She was hysterical playing with Beau’s squeaky toys. She would push her nose against the toy until it would squeak and then jump back a bit and yip.  I loved spending time with her and I was honored to be entrusted with her. When you instructed me about not letting her off her leash — it brought chills up my spine to imagine you having to worry about that when others provide her with “park time.”

Well, Beth says that thanks to Penny and all the good folks out there, she didn’t have to worry at all.

Going once, going twice…The Seeing Eye auction

Hava Hegenbarth is no stranger to this space. Her first appearance was a poignant post about her assignment at the U.S. Embassy in Rwanda. Her second was about her experiences raising a puppy named Spinner for Leader Dogs in Rochester, Michigan. Hava also helps out with the Seeing Eye’s annual online auction — here she is again to tell you about it.

One of Hava’s harnessed pups. You know you want one.

It’s quickly approaching!  My favorite event of the year – the Seeing Eye’s annual on-line auction. Why you may ask, do I get such a charge out of this?

It was at their first annual that I won an item listed as “Spend a day with Seeing Eye instructors.” That day we loaded up some dogs and headed to New York City. There I watched the instructors train the dogs. It was fascinating. After an hour or so, they announced it was my turn. They blindfolded me and handed me a harness. They led me to a dog. That patient dog stood while I clumsily attempted to put his harness on him. I finally got it right and stood up.  I was then told to command the dog forward.

I was terrified! Being blind felt so claustrophobic. The instructors understood. They were kind and encouraging but insistent.

“Just follow your dog.” They told me.

I took a step forward. It was alright.  Nothing bad happened to me. Another step and then another.  Soon I was confidently walking around New York as if had all my life.  What a thrilling experience!

Grateful, I have since then, tried to contribute items to the auction because I really believe in and support what the Seeing Eye does. What I mainly contribute are plush toy dogs which I’ve fit with hand-made leather guide harnesses. These have proved to be immensely popular with bidders.

At first I knew nothing of working with leather and my first harness attempts were somewhat crude.  I studied the craft and acquired some proper tools. Last year I went out to Massachusetts to work with the people who make harnesses for the Seeing Eye. They put me to work making real harnesses. I learned a great deal from them. My latest works are considerably improved. They do look authentic, but I always make them too small to fit a real dog as I do not want to make a harness that could be misused. In any case the harness handles are only leather-covered wire which would never stand up to actual use.

If you think you’d like to own one of these plush harnessed dogs or any of hundreds of other exciting items (including dinner for 4 with Betty White, or Spend a Day with Seeing Eye Instructors) check out the Seeing Eye’s 5th annual on-line auction.  The auction begins April 22 this year and you can find a link to it as well as instructions for registering to bid at the Seeing Eye’s website: www.seeingeye.org. They are also still accepting donations for their auction if you feel inclined to give.

Happy bidding and hope that you win!

Oh Canada!

Hi folks–FYI, Beth’s recovered nicely from her little ordeal, though Whitney’s testing her a little bit. Thanks for all the good wishes, I’ve passed them along to Beth, who seems to

Beth and Whitney outside our hotel — Lhotel — in Montreal.

be taking full advantage of the solitude and unplugging herself.

Now, let’s see. Before Roger Ebert died last week and before Beth was diagnosed with that staph infection we were in…Montreal!

Our three nights/two days in Montreal were magnificent — starting with our cab ride from the airport. You know Beth’s not shy about talking to everyone, especially cab drivers, and we got a cabbie who was articulate, extremely well-educated, well-informed, and talkative. Ethiopian by descent, he and his family immigrated to Montreal from Israel more than 20 years ago. During our half-hour or so drive, we got a taste of Canadian history and the politics surrounding the Quebecois separatist movement, of the state of Montreal’s economy…and pointers on where to walk, what to see, where to eat — and why fast food doesn’t fly in Montreal, only good food does.

He dropped us in Old Montreal — the oldest part of the city — at our hotel, called Lhotel, housed in a hundreds-year-old former bank building. It was formerly known as Hotel Xixe Siecle (Hotel 19th Century) — and some friends who had stayed there years ago recommended it to us. About three years ago, though, it was bought by Georges Marciano — a cofounder of Guess Jeans and art collector. He moved into the hotel — with his collection — which hangs in the lobby, hallways and rooms. We were in the Chagall room (and yes, there were Chagall prints). From an article about him in Macleans:

Guests wandering the halls of the five-floor hotel are treated to approximately 250 original works by A-list artists like Roy Lichtenstein, Robert Rauschenberg, James Rosenquist, Jasper Johns, Frank Stella, Jim Dine, Ed Ruscha, Christo, Claes Oldenburg, Willem de Kooning, and Robert Motherwell. Most are prints with their Sotheby’s or Christie’s stickers still on the bottom right corner, but some are paintings, like After by Jasper Johns and Night Clouds by Michael Gallagher. A portrait of Marciano created by Andy Warhol hangs over the sortie sign at reception.

Out front is one of the LOVE sculptures that Robert Indiana originally created for the Museum of Modern art in 1964. If you go back far enough, you know that sculpture — and variations on it — became ubiquitous during the late 60s and into the 70s.

In all, it was like living in a museum — one night after Beth went to sleep I just wandered the halls to take my time taking in the work. But the artwork was equalled by the staff — in particular a young woman with the absolutely appropriate name of Summer. The evening we arrived we were zonked and only wanted to eat and retire. Summer gave us what proved to be a perfect recommendation for a Bistro-ish place called Holder, only a few blocks away.

It was packed and bustling but not so noisy that we couldn’t have a nice conversation and Beth, as is her wont, got some good eavesdropping in, testing what was left of her French at times. (And there was no TV to be found, even behind the copper-clad bar!) Every person we encountered — in stores, restaurants, wherever — spoke French and Engish, and many so well that I swear I wasn’t sure what their first language was. I think because in some cases, there was no “first.” If there is tension about the language, we didn’t see it. There had been no succession, but French — language and culture — lives, and in my view, that’s for the better. The people we encountered were very attentive, but not in that corporate “I had to take human being lessons and introduce myself as your server” way. They were playful and charming.

By day we walked. And walked and walked. Whitney did quite well on Old Montreal’s streets, where she masterfully threaded Beth through crowded and very narrow sidewalks. I just lagged behind an marveled. We headed up St. Laurent, which years ago marked a separation between French and English-speaking Montreal. We walked miles passing through distinctive neighborhoods — Chinatown, through a Portuguese section, then a more gentrified section filled with high end kitchen and furniture shops.

Whitney did a good job.

And we landed at a little bakery recommended by Summer  – croissant, coffee, and Rioppelle cheese, a Quebec specialty. (Get some if you can–imagine a soft cheese, like Brie, but with a full, nutty flavor). Beth and I ate slowly — comparing the offering to our morning’s croissants at the hotel breakfast. Ahhh. I felt like Joni Mitchell’s Free Man in Paris. Unfettered and alive. But in Montreal, not Paris.

There were two places recommended to us that we did not make it to — Schwartz’s deli, for its signature smoked meat (that’s what they call it–just smoked meat) that is apparently like pastrami on steroids. We walked by but the line was more than we wanted — the weather was beautiful and we were enjoying our walk too much. Plus, we had to burn off the morning croissant to make room for the afternoon’s.

We also intended to go to Au Pied du Cohcn for what sounds like a pork fest, but we failed to land a reservation. Summer came to the rescue. She put it this way: “We have lots and lots of places that will make you feel like you’ve been transported to Paris, but if you were thinking Au Pied Du Cohon, I’d recommend L’Original. It’s very Quebeccoisehttp://restaurantholder.com/en.”

L’Original it was. I had boar shoulder that had been braised and then coated in some sort of divine demi glace. Think pork with more flavor and succulence. Beth had Halibut. Beyond that, we had too much good food to catalog, but I will say that the mussels and frites, yes, they transported me.

On our last night, a Brazilian jazz trio played in our hotel lobby bar. And they were good! Think Gilberto, but they also did some regional styles that we’d never heard before but fully enjoyed.

I can’t really do it justice — I will say that if you get a chance, go! It has much of the kinds of appeal that New Orleans has — it has the energy and texture and variety that only a cultural and historical crossroads can create. In fact, I’d say it’s earned a repeat visit for us.

P.S. — Summer and some friends made a short documentary about their trip across Canada. Which is really big. So check it out: http://www.vimeo.com/smyc or email showmeyourcanada@gmail.com

 

A familiar and most unwelcome feeling

Hi folks, here’s the first of my substitute blog appearances. Hope you’ll bear with me while Beth’s in her residency at the Vermont Studio Center.–Mike

So, Beth and I were in Montreal before we dropped her in Vermont. Everything about our Quebec weekend was fabulous. Fantastic food, charming people–and some great artwork–in our hotel! But more on that later. First, a dispatch about Beth’s first week in Vermont.

Beth and Whitney outside our hotel–Lhotel–in Montreal. The place is packed with the owner’s art collection.

On Sunday we woke up in Lhotel, went downstairs for one more sublime breakfast of sublime croissant and sublime coffee–not to mention meats and cheeses. Then it was off to…Hertz. Somehow, nothing kills a croissant buzz like a rental car. But hey, we got a nice Jetta, and we headed to Johnson, Vermont.

Beth and I had already talked about dropoff day — it was a source of quiet dread for both of us. Now, Beth getting an NEA fellowship to work on her writing was a terrific thing. The Vermont Studio Center — by multiple accounts of friends who’d spent time there — is a terrific place. Still, the dread — well beyond the natural trepidation about a month-long separation.

We figured out that it traces back almost 28 years. That’s when I dropped off Beth at what was then called the Illinois Visually Handicapped Institute — destined to be renamed Braille Jail by Beth after an up-and-down stay of nearly three months. The application process to get into IVHI had been a classic paper chase — with doctor’s reports, waivers, and endless mortgage-financing-style requests for more and more documentation.

We’d been married a year and already had spent a good portion of it apart from one another. Beth’s surgeries and hospitalizations and followup visits were in Chicago — but we lived in Urbana. So I’d see her on weekends and head back to Urbana and back to work, always hoping for the best. After the doctor said Beth would not see again, she came home. It was difficult and awkward, but at least we were together. And I wasn’t trusting her care to strangers.

So, by the fall of 1985, even though we both knew Beth needed to spend time at IVHI, the last thing we wanted was for her to go away for several months.

Still, we thought, it was worth it: Beth would learn Braille. And orientation and mobility skills (using a white cane to navigate). And the romantically labeled Activities of Daily living (cooking, cleaning, daily grind stuff). And, importantly, she’d learn to measure out and give insulin injections for herself using some adaptive tools and techniques. I’d been preparing her shots since she came home.

We moved Beth into her dorm room, we took a guided tour, we met the director. I felt like I was dropping her off at college. Except it wasn’t anything like college. It was something she had to do because she was blind. It didn’t help that though that neighborhood has changed radically for the better since 1985, back then, it was treacherous. And the place felt a little prison-like.

It was not a happy time. We said teary goodbyes, and I drove south to our apartment in Champaign. Telling myself that it was silly to worry and that this was important, all the way down the straight, flat and lonely I-57.

Well.

Not long after I got home, the phone rang. It was Beth. She had a shaky voice. I asked her what was wrong. “I’m at Cook County hospital,” she said. “WHAT!?” I boomed over the phone. I collected myself. Until Beth learned how to do her own injections, a nurse would have to do it. Except IVHI had forgotten that. And no nurse was on duty. She asked staff who were there to simply measure an injection, but they said the rules said they couldn’t do that.

So, of course, the reasonable next step was going to the Cook County Hospital emergency room, where Beth waited in a hallway for hours to receive her insulin injection. It was an awful start to an awful stay that was rife with bureaucratic snafus and delays. For example, we’d obtained a doctor’s statement that Beth was fit enough for the occupation and mobility training — which could be strenuous. But that paperwork got lost. We got replacements, but it set off a dominoes-from-hell chain reaction that prevented Beth from getting mobility training for more than a month. She really was something of a prisoner.

All of this came from an entity that was supposed to be helping. It was the last thing Beth needed at that point. I didn’t much care for it, either.

And so, whether it’s been going away to get her dogs or — going to Vermont — we are both haunted by those dark times whenever she’s headed off for an extended period of time.

Whitney likes the view outside Beth’s studio.

At the Vermont Studio Center, I helped her get situated in her room — and her cute little studio space, which happens to be right beside a lovely little stream, which runs down from lovely mountains. Nothing fancy, but, well, lovely. Still, Vermont is not know for right angles or a grid road system — which present challenges to Beth and Whitney. And we both knew it would take her days before she was confident getting from her dorm to her studio to the dining hall and back.

But, we both know she would. In a very short time on Sunday afternoon, we met terrific people — staff and fellow students–who had already been extremely helpful. And so, though it was sad to part, I felt good by the time I got home Sunday night.

And then, Monday, I got a call. “I’ve had an eventful day,” Beth said. And she had. She slept fitfully her first night. Her elbow hurt. She had a fever. One of the Vermont staff looked at her arm and said it looked bad, and wisely took her to the nearest emergency room. There, they suspected a staph infection. They did an incision — and an MRI — to determine that the infection had not gone deep into her joint and muscle tissue. Still, because of the threat of superbugs, they started her on a cocktail of antibiotics, including some pretty strong stuff.

Luckily, cultures came back that indicated it wasn’t as serious as it might have been. And the antibiotics did their job. And today, she called to say that after two nights in the hospital, she was back in her studio. Writing. With Whitney at her feet. Next to that beautiful little stream. In that beautiful little town. She’ll get visits from a nurse for 10 days, but she’s in great spirits. She says the food is terrific — the Studio has a staff chef!

Whew. She’s back. She’s fine.

And just maybe, the ghost of Braille Jail is gone. For good.

Buy him some peanuts and Crackerjack

Here’s one last post I prepared before taking off for my residency at the Vermont Studio Center. Baseball season is finally here, and when I asked my friend Bob Ringwald to write a guest post about his love for the game, he willingly agreed.My brother Doug introduced me to Bob Ringwald years ago — they’re both jazz musicians, and they play together from time to time. Bob is blind, and it sounds like he’s looking forward to baseball season as much as – maybe even more than? – I am!

Take me out to the ballgame

by Bob Ringwald

The New York Giants moved to San Francisco In 1958, and that’s when I became a Giants fan. I was at a game at Candlestick park on a day when Willie Mays hit four home runs! But in the 60s and 70s, after Willie Mays left the Giants, I was working 6 and 7-nights a week as a musician. I had no time to follow baseball.

We moved to Los Angeles in 1979. One night I happened to decide to listen to a Giants – Dodgers game on the radio, and that was it: Vince Scully, the amazing Dodger play-by-play announcer, won me over. He is the best I have ever heard, and believe me, I’ve heard a lot of baseball announcers. I became a dyed-in-the wool Dodger fan.

We moved back to Northern California some 18 years ago, but I’m still a Dodger fan. I bleed Dodger Blue. Dodgers games are not heard this far north in Sacramento, but I can listen to the games using my computer on MLB dot com.

That’s Bob–Molly’s dad–announcing the lineups (reading from a Braille lineup card) at Dodger Stadium.

When we were still living in Tinsel Town, the Dodgers had a promotion once where you wrote in which baseball job you’d like to do: hang with the grounds crew, drag the base path during the 7th inning, sit with the sports writers and write your own story, hang out with the umpires, that sort of thing. I wrote a letter saying that I wanted to be the Public Address announcer. I knew someone in the P.R. department, so I handed the letter to him. That way it wouldn’t get lost in the thousands of letters I knew might come in.

On July 27, 1991 I used my Braille skills to announce the lineup for a Los Angeles Dodgers – Montreal Expos game. Guess I passed the audition: they invited me to announce the players as they came up to bat in the bottom of the 3rd inning, too, and when I put a little extra English on my announcement of Darrell Strawberry’s name, the 50,000 people in the stands went crazy. What a sense of power!

Later I was invited to go out onto the field at Dodger Stadium to see what the pitcher’s mound, bases, base path and home plate really felt like. I jumped up against the center field wall like a big league outfielder. I picked up the phone they answer in the bullpen when managers call from the dugout. I sat in the Dodger dugout alongside the famous drinking fountain that angry players have been known to destroy with their bats, and, as if that wasn’t enough, I also had the honor to sit in Vince Scully’s chair in the press box. My tour that day ended in the Dodger exercise room. Legendary Dodger manager Tommy Lasorda was on the treadmill, and we had a very interesting chat.

In the early 80s, my daughter, actress and author Molly Ringwald, sang the National Anthem at several Dodger games. Fernando Valenzuela gave her a signed baseball. Another time she was given a baseball signed by all of the 1981 World Series Championship Dodgers. I proudly display those autographed baseballs in my office.

From time to time people ask me, “If you can’t see the action, why would you want to go to the game when you could just as easily be at home listening to it on the radio?” I sometimes answer by saying “Why would you want to go to the game when you can see the action better, close up, at home on TV?” I do take a portable radio to the game to hear the play by play. But there is something more. There is the electricity of the crowd, the sound of the ball hitting the bat and mitt, the P.A. announcer, the venders selling programs, ice-cream, peanuts and other assorted goodies. And of course at Dodger Stadium there are the famous Dodger Dogs. Dodger Dogs are just regular Farmer John hot dogs. But, once you walk through the turn styles of the ball park, they become a gourmet repast.

Care to guess where I’ll be later today? Yes . . . . we’re traveling 400 miles south from Sacramento to Los Angeles to attend the Dodgers vs. Giants opening day game at Dodger Stadium. Care to take a guess which team I’ll be rooting for???

You can check out more photos of Bob’s baseball days on his web site. Play ball!

Fantagstic!

If you liked that guest post an engineering student wrote for the Safe & Sound blog last month, you’re gonna love this update on what Ebay and his classmates came up with as ways I can keep track of the colors of my clothes. Freshmen in other Design Thinking and Communication class sections were working on other projects for people with disabilities at the same time, and here are some examples

• A man who uses a wheelchair wanted an easier way to fold up the footrests when it came to transferring into a car or a regular chair
• A man with cerebral palsy was looking for a more efficient way to pull his trousers up on his own
• Occupational therapists asked for a device that might encourage their clients with Parkinson’s disease to do finger exercises on-the-go
• The Rehabilitation Institute of Chicago hoped a class could figure out a way for clients with visual impairments to know how fast (and at what speed) they were walking on exercise treadmills
• a woman who uses a wheelchair and enjoys outdoor concerts was looking for a way to slide from her chair onto the lawn, then get back into her chair again on her own when the concert was over.

Ebay’s engineering class divided into four different groups to tackle my color identification problem, and Whitney and I traveled to a Design Expo at Northwestern Saturday to hear

A poster from the Fantagstic team’s presentation.

all of the students present their completed projects. Sixteen students had visited our apartment in February with prototypes ranging from carabiners to iron-on tags to QR codes that my talking iPhone could read to me, and seeing (okay, touching) what these four teams had come up with in the end made me glad I’d come out of the closet about my wardrobe woes.

Right now I put a safety pin in the tag of anything I own that is black, and a paper clip on anything white. I wear other colors, too, and I memorize what color those other things are by the feel of the clothing. On their February visit, the students watched me go through my closets and asked lots and lotss of questions. In the end all four teams expanded on my tried and true safety-pin method, each team inventing different things to hang from the pin to correspond to the color of the item.

Ebay’s team came up with acrylic shapes on cloth tags called “Fantagstic!” They reasoned that cloth tags would be lightweight, so I could use two or more at a time to identify multi-colored items. The tags another team came up with were laser-cut acrylic shapes called “Depindables”. The tags all the teams came up with had been tested to withstand high temperatures in the washer and dryer. “Tag Team” was the only team to use traditional Braille code on its tags – the other teams learned from research that a majority of people who are visually impaired do not read Braille. Ebay’s team designed its own palettes of shapes (lines, S’s, C-shaped arrows, dots, corners, and triangles) that they’d tested on me earlier to confirm the shapes were easy to feel and differentiate from each other. The “Code of Many Colors” team used small glass beads on the safety pin: one bead means black, two beads mean white, and so on. Judges from engineering firms were on hand to decide on winners for each proposal, and the winner for mine was…drumroll, please…Tag Team!

The winning “Tag Team” team

The Tag Team system is more than a label to safety-pin onto my clothes. It’s also a way to organize my closet and laundry. Tag Team includes a laundry hamper that holds a number of mesh bags, each bag with a tag attached that corresponds with a single color. They figure doing laundry will be easier if I don’t mix all my clothing in the hamper, only to have to resort it all again when the wash cycle is over. “All you do is put your clothes in the bag it belongs in, take the bag out, tighten the string, and throw the bag in the washing machine.”

What about times I’m too lazy to put dirty clothing into the proper mesh bag, you ask? “No worries,” said Tag Team with pride. With the Tag Team system, everything you wear has a tag pinned inside of it. ”Wake up the next morning, feel the tag on the shirt you wore the night before, and you’ll know which bag to put it in in your Tag Team hamper.”

I had to hand it to ‘em. But if you ask me, all the teams at the design expo were winners. These kids are just freshmen, and not only have they learned about design process, but also how much it can mean to work together to help people with unusual, unique, and unmet needs. I was the biggest winner of all, though: I got to work side-by-side with these talented and thoughtful young people, and when design expo was over Saturday afternoon, I walked out with custom-made prototypes of all the tags!

Folks I talked to Saturday from the Segal Design Institute at Northwestern University told me they’re looking for new project proposals from people with disabilities and organizations who work with us. If there’s something you need and you live in the Chicago area, I encourage you to submit a proposal soon.