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2020, in Hindsight

January 6, 20217 CommentsPosted in blindness, careers/jobs for people who are blind, memoir writing, Mike Knezovich, politics, Seeing Eye dogs, teaching memoir, technology for people who are blind

Every December the publisher of my book Writing Out Loud asks me to write a year-end holiday message to send out to people who subscribe to my newsletter.

Image of book cover, link to newsletter signup.

Click on the image to sign up for my newsletter.

But this past holiday, I had writer’s block. Who wanted to think hard about 2020? What would I write about? Conference presentations that got cancelled? Visits to elementary schools that didn’t happen? Friends and family members I haven’t hugged since February? Baseball games we didn’t go to? Life without music concerts? No live theater? No Summer Dance? How I managed to survive all that?

Wait. Surviving it all. Precisely what I’d write about. And now, in hindsight, I could credit blindness for helping me through. Newsletter subscribers were rewarded with the longer version of this story. For you blog readers, the following is an excerpt. Happy New Year!

Let me be clear — the fact that I am blind is not what helped me cope. Being blind is somewhat problematic in a pandemic. Social distancing, for example, can be difficult. Hard to judge what six feet is. Seeing Eye dog Luna and I do our best.

The thing that helped me cope this year is the experience of going blind. Three decades ago, I survived a similarly scary year. 1985 was the year I lost my sight. Like 2020, a year of loss and limitations.

And lessons learned.

Some of those lessons? Slow down. Ask for help. Be brave. Be resourceful. Learn new skills. Help others. Make mistakes, and learn from them. Be grateful. Focus on things you can do rather than fret over those you can’t.

Simply put, allow life-altering events to do just that: alter your life. The skills I learned the year I lost my sight all came in handy when Mike was admitted to the hospital in March this past year with the COVID-19 virus:

  • Luna and I were alone, on our own, for ten days. I wouldn’t have made it through without her, and I’m grateful to the Seeing Eye for her training.
  • People contacted me to see if I needed help, and I answered honestly. I could use some food! Far-away friends and family charged meals-to-go at local restaurants, and neighbors volunteered to pick up my dinners and deliver them to our condo.
  • I got more adept at using VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike called, or when caring doctors, social workers, friends and family contacted me to see how he was doing.
  • My part-time job moderating this blog for Easterseals National Headquarters saved me from feeling lonely. Public policy, special education, health care, funding – all extremely important issues during a pandemic. My work there kept me engaged, and I am grateful my job continued, working from home.
  • Before he got sick, Mike had been taking Luna out for her nighttime “empty” of the day. Now, just like when I was losing my sight, I had to be brave. I donned a mask and disposable gloves every night, and assumed bad guys were staying home during the pandemic.

As days went on with Mike still in the hospital, I started ending my email and text responses by asking that, “If you pray, please pray for us. If you think, send good thoughts our way.”

They did. It worked.

After ten days away, Mike came home. And that’s when it dawned on me. I hadn’t been home alone at all: all those people thinking about us helped us through. In its own upside-down way, 2020 has taught me what a gift it is to love – and be loved by – people so much that we ache to be with them in person. I’m hopeful for 2021, a year of good health, happiness…and hugs.

Beth’s Personal Pandemic Playlist: 19 COVID-related Song Titles

November 11, 202020 CommentsPosted in blindness, careers/jobs for people who are blind, Mike Knezovich, Seeing Eye dogs, teaching memoir, technology for people who are blind

Trainers at the Seeing Eye school encourage us to talk to our dogs as they guide us. “Remind them you’re there,” they say. “It keeps them focused.” Since the pandemic hit, I’ve been taking one, and sometimes two, hour long walks with Luna every day. What happens when I run out of things to talk to her about? I sing to her instead. This blog idea came up on one of those sing-along walks. I narrowed the titles down to songs I listened to as a child and in my young adulthood, and my focus here is on the title of the song, not the lyrics. Here goes:

  1. Every Breath You Take (The Police) Before 2020, I took breathing for granted. Not anymore.
  2. Fever (written by Otis Blackwell and Eddie Cooley, performed by everyone from Peggy Lee to Beyoncé) High fevers are a common symptom of COVID, and when Mike took sick on March 17, his fever spiked at 103 ° and stayed there.
  3. I Can’t Get Next to you (The Temptations) Mike and I separated into what he referred to as our “two kingdoms” at home for a week before he collapsed from fever and was taken to the ER.
  4. Gimme Shelter (Rolling Stones) Sheltering in place became the norm.
  5. We’re All Alone (Boz Scaggs) With Mike in the hospital, new Seeing Eye dog Luna and I were at home alone for ten days.
  6. Puppy Love (Donny Osmond) See above.
  7. And I Miss You (Everything but the Girl) I missed Mike.
  8. Telephone Line (Electric Light Orchestra) I worked on my skills with VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike called, or when caring doctors, social workers, friends and family contacted me to see how Mike was doing.
  9. Don’t Stand So Close to me (The Police) Determining just how far away six feet is without being able to see is not easy. I give it my best guess when out alone with Luna.
  10. Signed, Sealed Delivered (Stevie Wonder) Mike still in the hospital. Friends and family members signed me up for gift cards at small local establishments, restaurants sealed hot meals into to-go bags, nearby friends picked them up and delivered them to our lobby. You know who you are, my friends: thank you.
  11. Does Anybody Really Know What Time it Is? (Chicago) Is it just me? I have a hard time keeping track of what day it is, too.
  12. Only a Fool Would Say that (Steely Dan) January 24: “We have it totally under control. It’s one person coming in from China and we have it under control. It’s going to be just fine.” March 6: “The tests are beautiful. Anybody that needs a test, gets a test.” May 21: “So when we have a lot of cases, I don’t look at that as a bad thing. I look at that as, in a certain respect, as being a good thing because it means our testing is much better. So I view it as a badge of honour. Really, it’s a badge of honor.”
  13. Makes Me Wanna Holler (Marvin Gaye) Chicago Tribune columnist Heidi Stevens quoted Mike in a column when he was still hospitalized and I was waiting to be approved for a COVID test. He told her it was frustrating to watch the news from his hospital bed and hear President Donald Trump deny that the United States lacks sufficient tests. “Setting aside partisanship,” Mike said, “That’s really insulting. It’s insulting to be lying here and hearing that. It’s insulting to me, but also to all the people working here so hard and having to figure out who to give tests to and who not to, because they don’t have enough of them.”
  14. Here We Are (James Taylor) Mike gets released from hospital, spends three nights at a COVID Hotel, and finally comes home COVID-free.
  15. Dizzy (Tommy Roe) COVID-free doesn’t necessarily mean symptom-free. A “longhauler” now, Mike still gets dizzy while taking walks.
  16. We’re Gonna Zoom, Zoom Zoom The theme song from a 1970s PBS children’s show becomes my theme song for the memoir-writing classes I lead.
  17. Long Ago and Far Away (Joni Mitchell) Running into old friends out and about, giving them hugs, traveling to visit out-of-town family and friends, having people in for dinner, visiting elementary schools to give presentations…Seems like decades ago now.
  18. So Far Away (Carole King) See above.
  19. Happy Together (The Turtles) Neighbors start bringing chairs down to local park, and on hot days little kids bring sprinklers, too. While wearing masks and social distancing we catch up with each other. Temperatures are falling now, but hey, we all own warm winter coats! We pledge to continue meeting outside this winter.

Have a song title to add to the list? Leave your suggestions in the comments!

Teaching via Zoom? You Can Do It With Your Eyes Closed

September 2, 202010 CommentsPosted in blindness, careers/jobs for people who are blind, teaching memoir, technology for people who are blind, writing prompts

In his guest post last week, Michael Graff said that when the idea of teaching memoir via Zoom first came up, “Beth was skeptical.” A very generous description there. Had I been editing his rough draft, it’d look like this :

Beth was skepticalstubborn.

Even before COVID, many people were suggesting I offer online courses in addition to in-person ones. “You could get people from all over the country,” they’d say. “You could charge a lot, and you wouldn’t even have to leave home.”A pair of sunglasses on a white desk next to a keyboard and mouse. Not leave home? Being with my writers is what I love most about teaching memoir. You’re right there, sensing the emotion from writers as they read personal essays out loud. As the class continues, you feel a certain trust develop in a room of people who once were strangers. You witness friendships growing.

”Thanks for the suggestion,” I told those computer-screen addicts back then. “It just won’t work for me.”

But they wouldn’t give up. “You can see everyone,” they’d continue, describing how an online class works. “You can watch their reactions right from home”

“But I can’t see!” I’d remind them. And that’s where the conversation would end.

But then, COVID happened.

When Wanda’s Wednesday class was cancelled in March, Sharon Kramer, a writer in that class and a graduate of the Beth Finke Memoir Teacher MasterClass, stepped up to the plate. She volunteered to teach her fellow writers how to use Zoom, and she’s been leading that class via Zoom ever since. I could hug her for keeping that class going.

Not now, though. Sigh.

Writers in two other classes I lead generously offered to stand in and lead classes via Zoom for me during COVID, too. Then Michael Graff (last week’s guest blogger) and his classmate Hugh Brodke lobbied to have me lead a trial Zoom class for Village Chicago. The trial class would be a good way to determine if it’s possible for people who are blind to teach using Zoom, they said. Writers could sign up to see if they’d like Zooming enough to commit to a six-week session.

I passed the audition.

Months later, I am leading three classes a week from home via Zoom. How does a person who can’t see manage to give writing prompts, interact with the writers, field questions, and keep tabs on who is (and isn’t) paying attention? Here’s how:

  • Zoom has a dedicated accessibility team. Thanks to the efforts of people on that accessibility team, Zoom services are compatible with the standard screenreaders I use: VoiceOver on my iPhone, and JAWS on my PC
  • When each writer arrives at the meeting, JAWS barks out their name in my headphone, a la “Alfred E. Newman has joined the meeting,” which allows me to keep track of who hasn’t arrived yet.
  • Ditto when people sneak out early, as in “Alfred E. Newman has left the meeting.”
  • I use keyboard shortcuts to mute and unmute myself.
  • Most writers were in class when we were meeting in person, so I am familiar with — and can identify them by — their voices.
  • Writers I have never met in person email their essays my way for editing before class, going over their written work ahead of time gives me an idea of who they are, and I’m learning to match their speaking voice with their writing voice.
  • Limiting the essays to 500 words helps class, ahem, zoom by.
  • Participants are far less likely to get bored or restless or make unnecessary noise when class zooms by like that.
  • The high-quality headphones I use allow me to hear each writer clearly as they read their essays.
  • The microphone attached to those headphones is high-quality, too, so everyone can hear me.
  • Writers in my classes are not shy about telling me to raise or lower my screen so they can see my entire face rather than only my chin or forehead.

But if you want to know the real reason I’ve been successful leading Zoom classes, it’s this: a writer in each Zoom memoir class I lead volunteers to act as host and moderator. They set up the Zoom class, they know how to mute everyone in class while simultaneously unmuting the writer who is reading their piece, and can contact me in-between classes to rat out anyone who was taking a catnap or filing their nails or reading the paper or watching TV while a fellow writer was reading their essay. Writers in my Zoom classes: consider yourselves warned!

So a huge thank you to my hosts and moderators: Ellen Schweri, Regan Burke, and Michael Graff. I couldn’t do it without you. Zoom is working, yes, but I do look forward to sharing our stories in person again. And to that hug with Sharon, too.

Alone. Together.

April 9, 202042 CommentsPosted in blindness, Braille, careers/jobs for people who are blind, Mike Knezovich, Mondays with Mike, Seeing Eye dogs, teaching memoir, technology for people who are blind

Every night at 8 pm, our neighborhood has a social distancing party. Saturday’s was an especially good party–it was Mike’s first.

Two weeks ago today Mike was admitted to Northwestern Memorial Hospital in Chicago with the COVID 19 virus. Here are some things that happened at home while he was away:

  • When I let my friend Jamie (yes, the same Jamie who was driving me to school visits before the pandemic hit) know, she rallies her book club and some old college friends to help.
  • Each would choose a night and charge a meal for me at one of our small Printers Row restaurants taking to-go orders now (ordering directly means restaurants do not have to share proceeds with delivery companies).
  • Neighborhood friends volunteer to pick up my dinners and deliver them to our condo
  • I eat well.
  • “It takes a village,” I text to one of those local volunteers to thank her for delivering a meal to me one night.
  • ”And ours is a good village!” she texts back.
  • I miss Mike.
  • I get hooked on audio books by Irish author Maeve Binchy. The sweet lilting accents carry me far away, stories are playful. Kind of like Louise Penny books, but they take place in Dublin rather than Three Pines. And no one dies.
  • Becoming more adept at using VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike calls, or when caring doctors, social workers, friends and family contact me to see how he’s doing.
  • My part-time job moderating the blog for Easterseals National Headquarters (located in Chicago) continues, I am grateful, working from home, and, while distracted, I do what I can to devote my thinking brain to that work.
  • I miss Mike.
  • I set an alarm for 2:30 pm every day to listen to our governor and Illinois Department of Public Health Director give their daily update. Their honest and intelligent talks are comforting, and every once in a while the fabulous Mayor Lightfoot speaks at these, too.
  • I miss Mike.
  • Every night my longtime friend who is a doctor checks in with me, or I check in with her. She is working at one of the COVID testing sites and has sequestered herself from her family. Her COVID information helps me understand what Mike and I might be facing, and her friendship is sustaining.
  • I join the 21st century and start carrying my iPhone wherever I go.
  • Finish Quentins by Maeve Binchy. Starting her book Evening Class now.
  • A box of treats — and a bottle of white wine! — arrives by UPS from my friend Jill, owner of the sensational cheese shop Marché” in Glen Ellyn.
  • That’s when my nightly ritual begins: I pour a small glass of that wine every night at 8 p.m., open the window, get comfortable on the couch, nosh on Marché snacks and sip wine while listening to the nightly sing-along going on outside
  • Somehow the days fly by.
  • A box of unused masks and disposable gloves arrives here from my great-niece in Minneapolis, who took care of her mom (my niece Lynne), who was in hospice last year. The unused disposable gloves and masks were left over from that sad time — a bittersweet — yet extremely thoughtful and helpful — package
  • Mike usually takes my Seeing Eye dog Luna out for her last “empty” of the day. Now I don a mask and disposable gloves every time I take her out, and, assuming bad guys are staying home during the pandemic, I am fearless when out with Luna after dark.
  • Without being able to see, Unless people talk — or walk — loudly, it can be difficult to judge what six feet is. Luna and I do our best.
  • When I hear the “ding” that tells me an elevator has arrived, I point that way, command “forward! And Luna leads me to the opening. “Anybody in here?” I ask. Not sure if the elevators here are even six feet wide, so if someone answers, I urge them to go ahead without us: I’m not pressed for time!
  • Discovery: when wearing plastic disposable gloves, you can still feel the Braille dots in the elevator.
  • I finish Evening Class by Maeve Binchy. On to her novel Heart and Soul.
  • I miss Mike.
  • Day 7 of Mike’s hospital stay, and Chicago Tribune columnist Heidi Stevens contacts us to see if Mike and I would be willing to do phone interviews with her. ” I do think your story is a really important one to get in front of readers,” she writes, adding that she thinks it illustrates the complexities that this virus presents for different families. “It also emphasizes how problematic it is that testing is sometimes hard to find and the results take so long to get back, leaving families in limbo.”
  • We both are willing.
  • Heidi interviews Mike in his hospital room that morning by phone.
  • I am interviewed separately by phone at home.
  • Photographers not allowed in hospital, so Tribune photographer comes to Printers Row, meets me outside to follow Luna and me on her afternoon “empty” walk.
  • Heidi works fast. Her column about Mike is published by 5:30 pm that same afternoon.
  • I miss Mike.
  • In our evening phone call that night, Mike and I marvel at how Heidi Stevens does it: the column is beautifully written, accurate, and touching.
  • Word is out now. Mike is in the hospital with COVID 19, and I am home alone with Luna.
  • I miss Mike.
  • Okay, enough of those Irish books. I start Kill “em and Leave: Searching for James Brown and the American Soul by writer, musician, and national Book Award winner James McBride — he grew up near James Brown, and the book is fun to read. Now reading Slam by Nick Hornby
  • In her column, Heidi referred to Jamie’s dinner delivery group as my “meal train,” and friends, family and memoir-writing students near and far start asking me if they can hop on board.
  • “Sure!” I respond, suggesting they buy gift cards in my name at local restaurants.
  • Many of them do. Thank you all!
  • I grant Jamie’s group a furlough from the meal train and start phoning local restaurants who’ve received those gift cards to order my meals.
  • Neighborhood volunteers continue picking up and delivering those meals to our condo, and, I think, appreciate the opportunity to check in at the restaurant to-go windows and see how their friends on staff are doing.
  • I continue eating well.
  • I miss Mike,
  • I start ending my email and text responses to all the friends and family members who contact me after reading the Heidi Stevens column asking that, “If you pray, please pray for us. If you think, send good thoughts our way.”
  • They do.
  • It starts working. Mike getting better
  • So it dawns on me. Yes, Mike has been away for two weeks now, but I haven’t been here alone at all: all these people thinking about us reminds me. I’m one of the luckiest people I know
  • Over the weekend, Mike is discharged after three-day hotel stay. Clear of COVID 19, he can come home.
  • He does.
  • We hug.

If you missed it, grab a Kleenex and read this beautiful post Mike wrote about his experiences for his Mondays with Mike column earlier this week

Mondays with Mike: Houston, we have problems   

December 16, 20191 CommentPosted in Mike Knezovich, Mondays with Mike

Type 1 diabetes has dictated many of the terms of Beth’s life since she was seven years old. Back then, there were not finger stick tests and portable monitors. It was simply regimented meal times and meal plans. And it was all pretty crude.

When she and I began courting, way back in the early 80s, she’d just inherited a little money from her grandma—enough to pay for her first blood glucose monitoring device. It was a breakthrough, but it was high maintenance,

Since then, the monitors have become cheaper, faster, and more compact. Insulin pumps have been a boon to many, and Beth—for nearly the past year—has used something call a CGM (Continuous Glucose Monitor). Here’s how it works: A sensor is applied/installed on Beth’s person via a special applicator. The sensor has a tiny wick that barely penetrates the skin—enough to take readings of blood glucose levels.

We then snap an almond-sized transmitter into the sensor housing. The whole shebang is held on by tape.

Now, in an ankle-bone connected to shin-bone chain, the sensor passes its data to the transmitter, which then transmits the data to an app on Beth’s iPhone. Beth’s iPhone has a feature called Voiceover—Beth then asks Siri, Apple’s personal assistant— “What’s my number?”

And Voila! It tells Beth what her blood sugar is and whether it’s trending down or up. Without pricking her finger.

These things (CGMs) have been around for a good while now. But not talking versions—the iPhone app made it useful for Beth and other visually impaired people with type 1.

At least most of the time. Beth (and I, for that matter–I often help with tests) was used to finger sticking. But it did make for some pretty messed up finger tips. And it’s not great to sneak it out when we’re in public to do a test. In addition, the CGM provides much more or less continuous data, which helps manage insulin levels more granularly.

The kicker: The user can designate other people to follow their readings. So, I can follow Beth’s blood sugar via the internet and an App on my phone.

Until I can’t.

A couple weeks ago, just as Beth and I were leaving to see friends in Washington, D.C., something went haywire. I couldn’t follow the readings. For us, that’s no hardship. I don’t bother checking unless Beth asks me too—mostly when we’re in public spaces when she doesn’t want her phone to bark out her blood sugar numbers.

But then her own readings cut out.

Now, Beth has a talking finger prick monitor that she uses as backup. Except when it doesn’t work. And that’s what we discovered the day before we left for our trip. It fritzed at the worst time.

Yikes. Beth would be flying home after the weekend but I was staying on in D.C. another week for my non-profit organization’s conference.

As it turned out, we learned that the follower outage was a big deal that affected everyone with the same device who had followers. Mostly, this is kids with type 1, and their parents. It even made the NY Times.

We also learned that Beth had experienced a completely unrelated sensor failure.

We were our own little Apollo 13.

And we duct taped our way back to safety. The day before we left for D.C., I ordered a new talking monitor. It arrived the day after Beth got back to Chicago. The intrepid Ms. Finke then asked our building’s generous door person to help her install the batteries, and she was in business, the old-fashioned way (if you can call using a talking, portable blood glucose monitor old fashioned).

When I returned, I helped Beth insert a new sensor, and she and her CGM have been buddies ever since.

Let’s hope it lasts.