A few months ago Variety Magazine presented the first-ever in-depth look at people with disabilities in the entertainment industry. They started looking for writers to work on the special report this past summer, and it was important to the editors that one of the freelancers they hired for the project have a disability. Thanks in large part to my part-time job moderating the Easterseals National Blog, Variety chose…me!

Editors assigned me three people to profile: Fred Maahs Jr., senior director of strategic partnerships for Comcast; Tiffany Smith-Anoa’I, executive VP of entertainment diversity, inclusion & communications at CBS Entertainment; and Peter Farrelly, a filmmaker (and one of the “Farrelly Brothers”) famous for movies he’s made with his brother Bobby.

I enjoy interviewing people and writing profiles, but it’s been years since I’ve done that for a periodical, much less a magazine like Variety. Each phone interview was a conference call with others listening in – kind of unsettling — but I managed to get some decent quotes to use in the stories. Examples:

• Fred Maahs, Jr. has been using a wheelchair since a diving accident when he was 18 years old. “No matter your race, gender, orientation, ability, income, really, whatever your zip code is, everyone should have access to the Internet and to opportunity,” he says. “It’s the right thing to do.”
• Tiffany Smith-Anoa’I acknowledged that progress for actors and creatives with disabilities lags far behind other minority performers. “This isn’t a situation where people have a tremendous amount of malice, I think it’s much more a tremendous amount of ignorance.”
• Peter Farrelly told me he thinks making room for actors with disabilities makes movies better. “When I get people in the door who are actors with disabilities, I’m getting a face that nobody’s seen before, and that’s the advantage for me. There’s nothing worse for me than to see a movie where you recognize half the people from other movies. Then you’re reminded you’re watching a movie. I like new faces, and there are thousands of new faces out there, disabled actors who aren’t getting their chance. That just helps make the movie better.”

It took a month or more to get all the interviews done, the stories written, revised and rewritten, and during all that time I reveled in telling family and friends I was “working on a story for Variety.” Abilities Unlimited has been available online since November, and a four-color print version arrived by mail this past week. And guess what? They’re reprinting it for distribution at the 2019 Sundance Film Festival. Hot dog! Now I can tell friends and family that a piece I worked on “will be appearing later this month at Sundance.”

Today, Beth and I entered Dexcom 6. No, thermonuclear war is not imminent. Dexcom 6 is a continuous blood glucose monitor (CGM). A CGM constantly monitors Beth’s blood sugar level – now, when Beth wants to know what her blood sugar level is, she doesn’t need to prick a finger, apply blood to a test strip and wait for her little contraption to call out the reading. All she has to do is fire up her Dexcom app on her iPhone, and the app—working in conjunction with the Apple IOS built-in speech program called VoiceOver—reads the current blood sugar number out loud. (The number is displayed on the phone screen for those of us with sight privilege.)

After our Chinese lunch, Beth checked her phone–it read the number out loud, and voiced that the blood sugar is level (not rising or falling). That latter information is indicated by the arrow for us sighted people.

Not only that, the Dexcom app indicates whether the blood sugar is level, on a slow rise, or a slow decline, a fast rise, or a fast decline.

It may be something of a revelation, we’ll see. Meantime, have I mentioned lately how much type 1 diabetes sucks and how much I hate it? It sucks and I hate it deeply. At it’s best—when one has it managed very well and can avoid health issues that lack of control can bring on—it is invasive, sometimes capricious (why in hell did my sugar go low?), and burdensome.

I can tell you, it’s ruined many of my evenings, woken me up in the middle of the night, busted up plans, and scared me to death. So, it sucks for me and I hate it. Did I mention that?

But imagine what it’s like for Beth and others unlucky enough to have the genes that tell their body to kill insulin-producing cells. It sucks beyond description, that’s how much.

I say all this because as a witness, I know that technological advances can help, but they can also be mistakenly considered cures by well-meaning and wishfully thinking people.

Dexcom 6 ain’t no cure, and we shouldn’t rest until we get one. All that said, I gotta say the geek in me finds it really, really cool. You take this goofy looking applicator, press the soft pad on the bottom of the applicator onto the skin on the tummy, press a button and voila! The skin is pierced with a micro needle, the needle retracts, leaving a tiny, tiny wick under the skin to measure blood sugar. Then you slip a tiny, oblong plastic thing into the clip on the sensor. That’s the transmitter, constantly sending the reading from the sensor to the phone.

The sensor needs to be changed every 10 days, so that’s kind of a hassle. But people apparently routinely swim with these things—the sensors are waterproof (sometimes a little tape hack is required).

A representative from Dexcom met us at the Chicago Library Chinatown branch this morning and she ran Beth through the whole process with me watching. Long story short—because of liability, the rep couldn’t come to our home, and she finds that it’s often easiest to simply reserve a room at a public library.

It was a little out of the ordinary, but it gave us an excuse to have one of the better lunches in my recent memory. Ming Han, dude!

Anyway, the ability to identify upward and downward trends may be a game changer. Beth tests frequently using that talking blood glucose monitor of hers, but it can be difficult to get the blood in just the right place on the test strip without being able to see. That all can result in inaccurate results and a bunch of expensive test strips going to waste. So I do a lot of tests for her, too, using a standard glucometer and saying out loud what the number on the screen says.

So I get a front row seat to the ups and downs. Even with diligent testing, despite our best efforts we often fail to figure out just what the hell is going on with her blood sugar and especially, why.

One other kind of weird thing: I can download and app and track Beth’s blood sugar in real-time, too—if she wants me to. I think I may download it but avoid using it unless Beth explicitly asks me to for one reason or another. I mean, I don’t need help being neurotic or worrying, and Beth doesn’t need a Big Brother scold. I can only imagine the fights between parents and their diabetic teenagers.

Anyway, perhaps Dexcom 6 ushers in a new era for us. We’ll see.

The memoir-writing classes I lead are all on break now, so I have time to file through essays they wrote for our last six-week session and choose some to share with readers here. At Halloween I asked writers in my class at The Admiral at the Lake to use 500 words to answer the question “What Are You Afraid Of?” The essay Angie Mills came back with seems particularly appropriate as we think about the new year ahead of us.

There was a lot to be afraid of. Angie and her sister are among those in Iris Chang’s acknowledgements in the “The Rape of Nanking.”

Angie and her sister Harriet were born to Presbyterian missionaries and grew up in China attending American schools in Nanking and Shanghai. Just before the Japanese occupation of Nanking, her father, Wilson Mills, played an important role in efforts to bring about a truce to allow the Chinese army to withdraw from Nanking — the hope was the Japanese army would enter the city without fighting. I learn so much by hearing Angie read her work in class. History lessons, yes, and life lessons as well. Here is her essay.

by Angie Mills

Everyone has had at least one tic of fear in their clock of life. As a child, growing up in China, I was afraid of snakes and spiders which were plentiful in the mountain range where we spent our summers. One summer, my mother dispatched my fear of snakes when, as we walked through a bamboo grove toward home, a poisonous green pit-viper lay coiled a few feet in front of us in the middle of our narrow path. It raised its head several inches and flicked its tongue. Snake and human stared at each other then mother, undaunted, bent down, picked up a clutch of small rocks and threw them — the viper stretched into a glistening green ribbon and glided away.

As to spiders, my father, on several early mornings’ was moved to action by a scream from me, indicating that a spider (sometimes even a tarantula) had landed on my bedcover and I was afraid to get out of bed. Armed with a flyswatter and a roll of newspaper, he managed to maneuver the intruding arachnid, dead or alive, out the window.

Fear of snakes and spiders were thus easily quelled, but a fear of kidnapping lingered. The year was 1932, we were on furlough in New York City living on the fourth floor of a five-floor walk-up. I was in second grade when news of the kidnapping of Charles Lindberg’s young son filled the papers. I feared someone could raise a ladder up to my bedroom window, gag me, tie me up and carry me away. My parents and sister laughed, as they assured me no kidnapper would consider the seven-year old daughter of a depression-era minister worth the time and effort.

Snakes, spiders, unlikely kidnapping, I realize, do not a scary, fearful life make, but all were beginning steps to steel me for worse to come — and come it did — not in fear of personal danger, but of fearful worry. The next couple of decades were difficult — war, looting, disruption of home and family, refugee status for a brief time for my mother and me, Japanese internment camp for my father, Chinese prison for my sister. Compared to these memories what is worthy of my being truly fearful now?

In my tenth decade, the aforementioned fears and worries have long since faded. I doubt there will be more. I am resigned now to leave my final fear to Lord Time, who sits alert, calm, inscrutable, at the edge of voids and, as he fingers quickly through the abacus of my life, through the whys and wherefores to reach a final sum, I listen for his whisper.

“Not yet. Not yet.”

Our friend Ellen Sandmeyer had us over for Christmas Eve this year. Her two sons, her nine-year-old granddaughter Kaia and Kaia’s mom had flown in for the holidays, and we spent the evening together munching cookies, sipping drinks, sharing stories, and…learning Braille.

When I called ahead to make sure no one had allergies or a fear of dogs and it was okay to bring Whitney along, Ellen said they were really hoping we’d bring her. “We all read Safe & Sound together last night,” she said. “Kaia wants to meet your dog.”

My fan in Wisconsin wrote the Braille, and her teacher wrote in the standard characters and words.

My school presentations over the years have shown me kids love Seeing Eye dogs. They are intrigued with Braille, too, so I brought the Braille version of Safe & Sound along, too. Print letters appear below the Brailled words, so Kaia could read the print/Braille version along with me and help me when I struggled with words like “harness” and “unbuckled.”

Reading and writing of Braille is something of a dying art. Audio books are far easier to find than books written in Braille. Apps that convert written text into audio are more common — and less expensive — than apps that convert print into Braille, and these days only 20 percent of blind children in this country learn to read Braille.

I know what you’re thinking. With all that affordable audio technology, why teach any kid Braille? Well, technology is cool, but if all they do is listen to text, how will these children ever learn to spell correctly? How will they know where to put commas, quotation marks, paragraph breaks and so on?

I didn’t lose my sight until I was 26 years old, so I was fortunate to learn all of that when I could still read print. I’m not proficient in Braille now, but the little I know sure comes in handy when I want to confirm what floor I’m on when I get off an elevator or to label CDs, file folders and buttons on electronic devices at home. I can read Safe & Sound, too, but not very quickly. During visits to elementary schools teachers assure me I needn’t apologize for my poor Braille — reading skills. “It’s good for the kids to see a grown-up working so hard to try to read — it convinces them to try hard to read, too.”

And then there’s this: Research shows that reading Braille makes you happier. A recent study of 443 legally blind adults found that braille literacy is key to life satisfaction for blind individuals regardless of what age they become blind or how much residual vision they have left.

Arielle Michal Silverman, Ph.D., one of the two authors of the study, is the founder of Disability Wisdom Consulting in Silver Spring, Maryland. She regularly uses Braille for work and says Braille hasn’t been replaced by technology, but it helps her to use technology. Without Braille, she says, reading the speeches she gives for presentations at work would be impossible. “Knowing Braille from a young age has given me the literacy skills to follow my professional and personal dreams.”

Silverman, 33, was born blind and learned Braille as a child. She says some of her friends with visual impairments were not offered classes in Braille, even though they were legally entitled to it. “That made me really sad,” she said. “For me, Braille was such a joyous thing.”

I got a taste of Braille joy this past autumn when a student in Wisconsin wrote me a letter in Braille to let me know she’d just finished reading Safe & Sound. My book about Seeing Eye dogs was the first Braille book she ever read — now that’s an honor!

“I have not been visually-impaired for very long,” she wrote, explaining she’d lost most of her vision after being diagnosed with a rare type of brain cancer when she was eleven years old. Her Braille letter was beautiful –straight long lines of “fresh” Braille that’s easy to feel with my fingertips. Here’s some of what she said there:

I’ve been working on learning Braille for 4 years. I would like to write you from time to time if you would enjoy writing me back. Maybe it will help to improve my Braille skills.

Thank you again for writing this book! I’m wondering if you have a dog right now. One day I would like to work towards getting one too.

We do send Braille notes back and forth between Wisconsin and Illinois now, and her Braille teacher tells me that receiving mail from her Braille buddy leaves her student “grinning ear to ear.”

What a coincidence.

The home made group, 2018.

On December 23, 1983, I gifted Beth an elegant three-speed Peugeot bicycle, replete with nifty folding baskets, for her birthday. And then I gifted me by asking her to marry me. She said yes.

The next day, the low temperature in Chicago was -25, the high was -11. That’s temperature, not wind chill. The wind chill was anywhere from -60 to -80, depending on where you were. We started in Urbana, Illinois, driving north to Beth’s mom’s house. I drove a skanky old Pontiac Ventura. I had to bungee a big piece of cardboard to the front of the radiator to get the engine warm enough to run. When we stopped for gas halfway on the trip, it felt like an existential threat just being out of the car and pumping gas.

When we arrived, we found a full house that would eventually overflow with various Finke families from around the world braving the elements to get home for home made Christmas. A year or two earlier, Beth had suggested that given the burgeoning size of the family and the size of the Christmas event, it might make sense for everyone to draw a name, and then make a present for the person they drew. Back then, the cost limit was $5, though the limit has always been more of a suggestion just to keep cost down.

This year, our nephew Brian drew my name. He created a baseball card that featured his newborn daughter as a White Sox player. Pretty nice! Of course, he’s a Cub fan, so he took shots at my team on the back of the card. He’ll regret it when I get his name.

It was so crowded in Flo’s (Beth’s mom’s) house that Beth and I slept under the dining room table, next to some kids. I don’t remember who they were, because, well, there were and are so many of them.

The only other thing I remember about that particular Christmas is I was drafted into being Santa Claus and handing out the gifts.

Except for the Santa Claus part, we’ve done it every single year. It’s controlled chaos, because as one group of jumping bean little kids moved up, another group replaced them. The kids we slept next to on the floor now have kids. Yikes.

The gifts have run the gamut from “homemade” (presents that are only homemade in the sense that say, the giver signed the gift) to a literal footstool—made from the cured legs of a deer that a family hunter made. (I’m not kidding.)

For newcomers to Beth’s family, it can be a little intimidating and well, freaking nuts. But it always eventually grows on everyone, including me.

And so, this past Saturday, we gathered at a hotel meeting room (sparing whoever would have otherwise hosted it), had a light lunch, and as always, opened presents one by one. The thing about it is you have to think about the person—you might give something serious or something that teases—but you have to think about the person a little more than you would if you were just buying something; what you know about them, what you like, what you don’t.

It’s pretty cool.

And every year, it’s different but weirdly, comfortingly, the same. Things change. Between Christmases we triumph, we stumble, we lose people. But home made Christmas abides.

Thanks Beth, and thanks Finke nation.