Was it a virus? I don’t care, I feel better already!

Last night I woke up in the in the wee hours feeling like a little volcano was erupting in my stomach, forcing nearby areas to evacuate. It might have been something I ate, or a gastrointestinal virus, but at this point it doesn’t matter. I know it wasn’t the flu, because I’m sitting up straight and working on this blog. This morning, that didn’t seem possible.

Right now I’m having that feeling where, really, I’m still wiped out, but by comparison, I’m positively bouncy. Even if still in my robe. Feeling good is relative. Of course, while in the trenches of misery, I was resolving to go to the gym more often, eat better, you know the drill.

But that gall-bladder attack feeling so awful that I wanted to leave my body behind until it got its act together reminded me that, a) we humans can’t do that and so I had to suck it up and grin and bear it, and b) I’ve been pretty lucky for a long while to be mostly healthy.

I seem to have reached a new stage of life. I mean, I still feel like I’m 25, looking for the next adventure. But before I can embark, I feel the need to call out “oil can,” like The Tin Man, to get things humming.

Beth’s always dealt with a chronic disease—type 1 diabetes and all its ravages. And for the better part of my life, in a real way, I have, too. I watched her lose her eyesight, and I spent more hours that I can count maintaining hospital vigils for her and for Gus.

Any time I’d rant about how illogical and inefficient the health care system was, most friends looked at me with glazed eyes. Some would pretty much run away. I’ve come to realize that they just couldn’t relate. We were all 20-somethings, and had been healthy and had minimal experience with the system.

I’ve come to understand that because of my unique experiences compared to our cohorts, there were some lonely periods. I struggled with how far I should go with the stiff upper lip thing—I didn’t want people to think either of us couldn’t do something because our lives were taxing enough. Our lives could be really hard sometimes and I wanted to be able to say that without people thinking we were whining. Sometimes I think I isolated myself.

Fast forward, and whaddya know? No one gets out of here alive, and the people around us are catching up to us in maladies suffered, doctor visits, and hospital visits. A few weeks ago, Beth turned to me and asked, “Do you think that for the rest of our lives we’ll know at least one person going through radiation or chemo?” I would’ve liked to have said, “Nah.” I didn’t say anything.

I don’t like it much.

For one, I don’t want to lose friends or see them suffer. For another, I’ll be honest, I feel like I went through this whole health problems thing once, and now I have to do it again? Who do I see about this?

But I like to think that one upside of the struggles in our twenties is that it may have taught me, just a little, about how to be a comfort. It requires walking a line. The people that helped me keep afloat made themselves available. They knew when to be there, and when not to intrude. Being there has an intrinsic value. You don’t need to provide answers. Be there.

Just as important, they knew that sometimes, they could see things we couldn’t, and the injected themselves at just the right time and the right way. Sometimes, it’s best to intrude.

When I was in college literature classes, I used to scratch my head when professors or TAs would say something heavy like, “This book wrestles with the human condition.” What are they talking about, I thought, what’s the big deal about this human condition?

Now I know. The human body is both miraculous and wretched. We love people only to lose them or leave them behind. We want to live on, vaguely, but what if that life bears little resemblance to life as we have known it? Financial companies implore us to plan, plan, plan and make sure we have enough money to ,,, I don’t know. We are asked to trade off the present with future, when despite our best efforts, the future is one big crapshoot.

I don’t know about any of it.

What I do know is we just bought tickets to see the Sox play the Cubs in a spring training game—and Nancy Faust will be playing the organ!

The White Sox are still in the running for Manny Machado.

Last Saturday we made new friends over a scrumptious pot of red beans and rice made with the Camellia beans our friend Seth gave us while were visiting New Orleans last week.

We’re doing our best, and it ain’t all bad.

Last Spring we published a post here listing questions my young friend Ali, who is blind, had while planning a trip with her boyfriend Joe from her college campus to a Chicago jazz club to celebrate their anniversary. Since then Ali has become so adept at using technology to help her get around on her own that I asked her to write a post for the Easterseals blog about her favorite apps and how she uses them. I thought you Safe & Sound blog readers might be interested, too. so here it is:

by Alicia Krage

Back in May 2018, I wrote a post here about transitioning from the iPhone 6 to the iPhone 8, and how important this was for someone who uses their phone for everything. It’s a new year now, and I’ve decided to go a little more in depth with my first post of 2019: I’m taking a closer look at what I use my phone for. Starting with the apps I love most, here are some apps I think are especially useful for people who are blind:

1. Be My Eyes. This app connects a blind person to a sighted volunteer via FaceTime. When I first heard about this app, I liked the idea of having assistance at the touch of a button, but I’ve always been a little skeptical about my camera usage and accuracy. The cool thing about this app is that Voiceover will tell you what camera it is using — the front or the back — so you know how to hold the phone. You can use this app for anything you need help with, such as reading the expiration date on an item. I recently used it to get the expiration date on my vitamins. I knew someone recently who was traveling and used it to get assistance reading a sign. Whatever you need a set of eyes for, they’re there for you 24/7.
2. Uber. We knew this would be on there because of my assistive technology journal, right? If you didn’t, that’s okay, but I knew when I thought of this blog post idea that it would be on there. As someone who travels a lot – and also as someone who doesn’t always plan when to go out, I just leave when I feel like it — this app is great. It’s also very accessible. I don’t run into issues where there are certain text fields it doesn’t read. It reads everything, and when you leave the app open as you wait for your ride, Voiceover automatically refreshes the driver’s ETA without you having to continuously check. As the driver gets closer, it automatically reads that to you.
3. Trivia Crack. This isn’t useful for my day-to-day life, but it’s useful because sometimes I need a break from school and I want to play a game. You can play against a friend or a randomly-selected opponent, but it’s basically just 25 rounds of trivia questions. You learn a lot and it’s also rare that I see games that are accessible. (Tip: The version with no advertisements, while it costs $1.99, is much more accessible than the version with occasional ads.)
4. Amazon. This app is much more accessible than the website. I recently started doing more online shopping for the holidays, now that I found out you can mark something as a gift and they’ll wrap it for you. But anyway, navigating the screen and selecting the item you want is no trouble at all. Entering a credit or debit card number is simple, too. It’s also just one of those apps that I didn’t have to have someone show me how to use. I could pretty much figure it out by myself.
5. Ariadne GPS. I’ve told pretty much every blind and visually impaired person I know to purchase this app. I think the word “purchase” has made them contemplate actually doing so. I know a lot of people like free apps, but this is 10 dollars well spent. It allows you to see your precise location when you select “where am I?” It’ll give you the address, the city, state, and even tell you what county you’re in. You can select “start monitoring” so it’ll keep updating your location. It also tells you what direction you are going, and how fast you are driving in a car. It’s the most accurate GPS app I’ve ever come across….and I’ve come across a lot that don’t work.
6. Ventra. This is a great app to use if you travel by train in the Chicago area a lot and don’t want to always carry cash with you — you can use a Ventra card instead of paying with cash. While the signing up process was a bit tedious with Voiceover (the speech synthesizer that comes with iPhones), once I got my account set up, it was great. One of my favorite features to use is “transit tracker,” that allows you to see how far away your train is. It also allows you to add a certain train to “favorites,” so if you’re like me and you typically like to take the same train at the same time, it comes in handy.
7. Read 2 Go. This app is associated with bookshare.org and costs 20 dollars, but again, it’s money well spent. I put this on the list not for its accessibility, but for what they offer. They pretty much have any book you could possibly want to read. It’s free if you are a student. If you aren’t, it’s 50 dollars a year. That sounds like a lot, but I think that’s worth it for all the audio books you could ever want.
8. Google Maps. I know, you wouldn’t think this would be as accessible as it is, since maps are pretty visual, but you’d be surprised. This is last on the list because I don’t use it too often. I used it more back when I used cabs and wanted to calculate the fare based on distance and time, so I use it a little less since I don’t typically use cabs anymore, but it comes in handy. I still use it when I’m planning trips, or when someone is picking me up and I know where they’re coming from so I can have an idea of how long it’ll take them to get here. It’s another one of those apps you can pretty much figure out yourself.

Have any apps you especially like? Leave a comment and let me know. I might give it a try!

Writers sign up for my memoir classes for all sorts of reasons. Many want to get their stories down on paper to leave for their families, some start off writing their own stories and continue coming to listen to classmates read theirs, and others want to see their essays published.

With that last group in mind, I gave writers an assignment to look over a handout I’d put together listing magazines and publications accepting short essays from readers. “Choose one of those publications,” I

The irrepressible Regan Burke, professional writer.

told them. “Read the submission guidelines first.” From there they could either find a 500-word essay they’d already written that was what that publication was looking for, or write a new 500-word essay that might qualify. Writers weren’t required to submit to a publication for the assignment, but I urged them to do so. “It’s kind of fun!”

At the next class, writers read essays out loud that had been submitted everywhere from “Lives” in the New York Times Magazine to the “Waterlines” feature in Adventure Kayak. Most are still waiting to hear back, but one writer has already had a piece published in The Loneliness Project, and another was paid for the essay she submitted to “Home Forum” in the Christian Science Monitor. From the entry on my handout:

Christian Science Monitor’s Home Forum section
looks for humorous and/or upbeat personal essays from 400 to 800 words.
https://www.csmonitor.com/About/Contributor-guidelines/Contributor-Guidelines-The-Home-Forum

Being paid for a piece of writing qualifies you as a professional,and today I am extremely proud to share the link to professional writer Regan Burke’s essay, Why I Talk to Dogs, as published in the December 12, 2018 edition of the Christian Science Monitor. The call out for the story is “Their tethered humans might think I’m crazy, but I can’t help it.” And the byline? It lists a writer from my memoir class as “Regan Burke, Correspondent.”

What fun this all is!

We’re back home in Chicago now, and the magnificent Mondays with Mike post Mike wrote about New Orleans sparked a lot of questions from friends here. What prompted the trip? Do you have family there? What is an herbsaint?

That’s my helper Tallie.

Answer to that first question? Kismet. Our friends Steven and Nancy and their dog Doug are taking a road trip, the Vacation Rental by Owner house they rented for the New Orleans leg of the trip had an extra bedroom and bathroom, and Mike was able to find inexpensive flights (if we left Sunday morninng and returned Tuesday it’d be $75 each way). To answer the second question, no, we don’t have family in New Orleans, but our Printers Row ex-pat-friends Seth and Bess live there. Their oldest daughter was only a year old the last time we visited, and she just turned five last week. After Tallie’s teachers agreed to have Whitney and me come to her class at St Andrews Episcopal School, we booked our flights.

All the kids were seated criss-cross applesauce on the floor when we arrived, except for one: five-year-old Tallie, my special helper, was seated in one of the two chairs in front. We knew she wouldn’t remember me, and we weren’t sure if she’d be too shy to help, but I found the seat next to her, and once Whitney was arranged on the floor beside us, I reached over ever-so-carefully to pat Tallie’s leg and thank her for agreeing to help me. “You’re welcome,” she said, and the fun began.

Tallie and her parents had read my children’s book Hanni and Beth: Safe & Sound at home, and she brought her copy to show to her classmates. “Can you find a page with a picture of the dog and me together?” Tallie flipped  through the pages, found the perfect illustration, and when she lifted the book to show her classmates, I asked them all if the picture looked like me. The answer came in a chorus of exuberant yesses. “It’s you! And that’s your dog! It looks just like you!”

When I’d been emailing back and forth with teachers at St. Andrews Episcopal School in New Orleans ahead of time to plan this visit, one of them had alerted me that Monday would be their first day back. “The kids will be wiggly,” she warned.”You promise?” I wrote back. I love wiggly kids. Tallie’s classmates did not disappoint.

I reached over then to see if Tallie was back sitting on her chair beside me. My palm landed softly on her arm, confirming she was there, and as the teachers continued settling the other kids down, I whispered to Tallie. “Your shirt feels so soft, what color is it?” Quietly and carefully, Tallie described grey and pink designs. When I asked her what color her pants were, she became quite serious. I wonder now. Was that a moment when she understood I really couldn’t’ see her? “It’s all one piece!” she whispered. “They’re connected.”

By then the class had settled down enough for Tallie to be able to call on her friends who had questions. Or, in many cases, statements.

• • I have a cat who’s four.
  • How does that dog know when to cross the street?
  • When you’re blind, you look up, and all you see is the sky, so that’s why you need that dog, right? To tell you which way you’re going?
  • Your dog is cute.
  • I know it snows where you live, so does that dog wear a snowsuit?
  • I’m sitting on an umbrella.

One of their teachers, Miss Dominica, must have noticed the dumbfounded look on my face after that bit about the umbrella. “Each carpet tile is a different letter of the alphabet,” she explained. “Each child sits on the first letter of their name.” As I write this, I can’t remember who it was sitting on the umbrella. Ursula, maybe? Anyway, the kids took it from there, each child letting me in on which letter they were sitting on. “I’m on I, for igloo!” “I’m on G, for goat.”

What happens if two kids have names that start with the same letter, I wondered out loud. Off they went, all of them calling out letters at the same time “We have two T’s!” “There’s four E’s!” Mike says I am the worst person to have come and speak to kindergartners. “You’re one of them!” he says. “You stir them all up!”

Guilty as charged. Nothing better than getting questions from kids, hearing them laugh and have fun. Their curiosity — and their exuberance — bring me joy. So when the teachers had to settle the kids again, Tallie and I huddled. “How about you ask if anyone has a question?” Tallie is a good listener. When she asked loud and clear, in her Mardi Gras voice, “Do any of you have any questions?” One hand shot right up.

“I do! I do!” the little boy said. “I know you can’t draw pictures with a pen, but can you write words with a pen?” I reminded him that I was able to see when I was growing up. I’d learned penmanship then, too, and I still remember the shape of letters. “It’s hard for me to write in a straight line, though,” I admitted. I was about to tell them how using a straightedge helps, but when I realized they might not know what a straightedge is, I told them that if you put a ruler on the line where you’re supposed to write, it helps you keep straight. “Do you have a ruler?” the boy asked.

Of course I didn’t. Miss Dominica did, though. “I have a whiteboard and a marker, too!” she exclaimed. “I’ll bring them over.”

I’ve never written on a whiteboard. They weren’t around when I could see. Can I? Aha! An educational moment, Beth. Tell them it’s good to try new things. It’s okay if you fail. You can learn from mistakes. And so, while Miss Dominica held the ruler in place, the kids watched me write on a whiteboard.

The class had just been working on the word “I” before Christmas break, and by chance the first word in my sentence was “I.” They all knew that word, and one of the older five-year-olds could sound the entire sentence out. It was legible. Success!

While the class cheered, I asked Tallie one last quick question: Who’s the other t? “Teddy,” she said with a shrug.
“We share our square.”

P.S. I consulted an expert to get the answer to that third question. Mike tells me herbsaint is an anise-flavored liqueur that was originally formulated as a substitute for absinthe. It’s one of the ingredients in the New Orleans-originated cocktail called the Sazerac.

St. Joan of Arc Parade. Because. New Orleans.

…You walk and walk and walk and the next morning your legs are really sore, as if you’d walked all that distance on sandy beach because the sidewalks are so addled with cracks and heaves and missing sections.

…The classic New Orleans shotgun cottage your friends secured via VRBO in the Marigny neighborhood has been remodeled and is functional in every way, but the stairs to the attic and an upstairs balcony make you feel like you’re in an Escher print.

Iggy’s, open 24 hours for your convenience.

…Across the street from the classic cottage is Iggy’s, a tiny corner bar that is open 24 hours. Iggy’s has wifi.

…When you arrive you make plans to go to the St. Joan of Arc Parade, the first event of the Mardi Gras carnival parade season, at 6:00 p.m. the next day. On the afternoon of the parade you check for directions and learn that, oh, the parade will be starting an hour later than previously scheduled and oh, the route has also been changed.

Somewhere, Ken is jonesing.

…The next morning, at breakfast at Horn’s a couple blocks from the shotgun cottage, a tatted, dangly earringed, cowboy-booted and cutoffs-wearing waiter apologizes for his watery eye. “I’m sorry, I’m not stoned, I think it’s the glitter from the 12th Day parade (another name for the St. Joan parade).”

…Still at breakfast, you notice that one of the bicycles parked in the rack out front has a naked Barbie doll strapped to the handlebar-mounted basket, a sort of talisman.

…Still again at breakfast, several horse-and-carriages go by. They’re not carrying anyone; the drivers and their horses are commuting to work in the French Quarter, where they will pick up some riders.

Our home away from home.

…Nothing—walls, floors, streets or sidewalks—meets at right angles. The whole dang city has settled into a comfortable slouch.

…Your dog behaves like she’s on psilocybin mushrooms for parts of walks because the invisible sea of—shall we call them organic aromas—wafts everywhere.

…Central Grocery, and oil stains on your shirt from the olive salad on your muffaletta sandwich.

…Snug Harbor, d.b.a., The Spotted Cat. Bywater American Bistro. Herbsaint.

…Dinner with Steven, Nancy, and Printers Row ex-pats Seth and Bess.

…Do we have to leave? We probably better before we gain 20 lbs.

When are we coming back?