Mike at the mic

If you’ve been reading my blog lately, you know I’ve been in Madison the last week touting – and presenting at – the Vision Midwest conference. What you might not know, however, is that my husband was asked to participate in this conference, too. Mike sat on a panel Saturday morning, and I am happy to introduce him here now as a guest blogger to tell you all about it.

Wedding day, July 28, 1984, photo by Rick Amodt

Survivors Love Company

by Mike Knezovich

Beth loves a hotel room, if you haven’t figured that out by now. That’s partly for the same reasons lots of us do–a room at a hotel often means a special occasion. For Beth, though, it means a sort of idealized living space. Everything she needs is close and easy to find.

And so it is in our hotel in Madison. Beth arrived here earlier this week. By the time I arrived she’d settled in exactly as she likes to–Hanni’s stuff at a particular point at the foot of the bed, her own bag at another, and so on. I’m happy to fit my stuff around her blueprint, and it works splendidly.

But it hasn’t always worked so well. There was a time when our getaways to hotel rooms would begin rife with tension–and sometimes with a fight and hurt feelings. We’d walk through our door, I’d drop the bags and be giddy with excitement,  impatient to head out on an adventure. Beth, meanwhile, would immediately begin acclimating herself to our temporary digs. Hands in front of her, walking slowly–sometimes toward a knee-high end table, or a protruding wall-mounted shelf or…and I couldn’t help myself. I’d say “a little to the left” or “Lookout!” or worse yet, walk over to guide her around trouble. She’d get angry that I didn’t just let her do it her way, and that I’d broken her concentration. I’d get mad that she was mad. I was only trying to help, after all.

Those days, happily, are over. We’ve reached the point where we can talk about things like this–things where blindness requires reasonable accommodation on both our parts. But it wasn’t easy and as I learned at my panel discussion yesterday, it isn’t easy for anyone. The panel was for and about those of us in mixed partnerships–where one is visually impaired and the other is sighted. It was moderated by Chris Quinn, a marriage and family therapist. Quinn wasn’t always a therapist. He was a navy fighter pilot, and then a commerical airliner pilot–the holy grail in aviation–until he began losing his eyesight. He was married at the time, but his marriage eventually ended in divorce. For the past eight years, he’s been in a happy relationship–and his sighted partner was on the panel. Which is all to say, Chris knew his stuff.

I heard some heartachingly familiar stories from my fellow panelists. Betsy had lost her sight to diabetic retinopathy just as Beth had, and she recalled the laborious recovery period after retina surgery. Like Beth, Betsy had been required to lie face down for months. That allowed a gas bubble injected during surgery to rise and press against the retina to prevent the retina from detaching as it healed. Harder still to hear and just as familiar was her story about cleaning the kitchen shortly after losing her sight. She is a determined person and made up her mind to pull her weight around the house, as she always had. But after she finished in the kitchen one day, she heard noises and realized her husband was cleaning up after her.

You might think that was a nice thing. But just after a person loses his or her sight, self-confidence and self-assurance are in short supply.  And there was the time she made cinnamon toast for her kids–except she grabbed the chili powder instead of the cinnamon. Her 10 year old hugged her and broke the news. We winced and laughed at the same time.

A couple on the panel–the husband sighted, his spouse gradually losing vision to macular degeneration–told similar stories. In fact, describing himself as a neat freak, he said he and his wife finally talked about it and negotiated a deal: She could cook and bake as much as she wanted–guilt-free–and he could clean up after–guilt-free. There was a couple on the verge of retirement, but their retirement plans had been torpedoed by the husband’s vision loss. They’d been planning for years to live on a lake. Now, he can’t drive anymore, and everything is different. “I’m feeling overwhelmed,” said his spouse.

A woman in the audience explained that as her sight has grown worse, she must enlarge text to the point where she can only see one word at a time. She recalled realizing that without the context of the sentence, she couldn’t understand what she was reading. She said she felt stupid and useless and that she broke down into tears when she told her boyfriend about it. “He just said ‘I don’t think you’re stupid,’ and mostly he just listened.”

The sighted contingency took note–because often, as much as we want to make things right, what we learn is that the very best thing we can do is be there and listen. And our partners have to be willing te tell us this stuff. Another lesson was that as unique as our situations are, none of us are alone. And I hope–and believe–that those who attended who are on the front end of this experience learned that it gets better.

The main lesson I think everyone took away from the panel was you have to find a away to talk about things no matter how uncomfortable.