Meeting some new members in the RP club.

There was a wide variety of ailments to be found among the 100 or so members of my extended family who gathered together in Wisconsin for a family reunion recently. Ailments of every conceivable type and degree?physical, psychological, social. Of course. If you gather 100 people?any random 100 people?together in one place anywhere, you're going to find the same thing. What astonished me the most was that, of those 100, six of us have retinitis pigmentosa. Genetics aside, that's quite a percentage of blindos for one family.

There was me, of course. And there was my Uncle Tom, the man who diagnosed it in me 15 years before any doctors did. There was also his daughter (a cousin named Tammy about my age), her son, another cousin, Brian, who's a few years younger than me, and Luke, the teenage son of still another cousin, who had been diagnosed only recently.

The six of us could be identified as the ones who were moving unusually slowly and vaguely around the picnic tables, and who showed no interest in taking a spin on the go-cart track. We were also the ones who, once having found a seat, seemed perfectly happy to stay there for a while. None of us, at least there at the reunion, used a cane or a dog.

It was no surprise that at one point during the afternoon, most of us would gather together around one of the picnic tables and share notes.

I had to get a few cans of Pabst in me first to work up the courage. I was always a little nervous in recent years about approaching my Uncle Tom. I'd written a nasty description of him in a book once?an unfair and undeserved description?and I guess it irked him. First time I saw him after the book came out, in fact, he wrapped a big arm around my neck, pulled me close, and told me that he was going to kick my ass. He didn't, held in check as he was by my mom's counter-threat, but still?he could have if he wanted to. This time, when I worked my way over to the table where he and my cousin Brian were sitting, he was perfectly friendly. No threats whatsoever.

Tom, in a t-shirt, baseball cap and thick glasses, was the oldest of the lot with RP, and so as a result was in the worst shape. He'd also, over the years, been through the most extensive array of experimental programs and procedures.

"I was in the cafeteria," he said of one training center for the blind he was at for a while, "and I saw this woman moving around the table and picking up her tray. She walked back up to the counter, and I said to the guy next to me, 'She doesn't seem to be in that bad shape. She's moving around pretty good.' Then she came back to the table and sat down in my lap."

I told him about a similar problem I had on the subway not that long ago. When I get on the train, first thing I do is scan for an orange space, then aim for it (I have trouble on those older trains with the gray seats, but the orange ones I can see). "Well, one morning," I said, "I got on the train and scanned for an orange space to sit down. Now I don't know if it was hunting season or not, but?"

That was a bad morning.

"There was another guy there," Tom went on, "who had no eyes. I don't mean he was just blind?he had no physical eyes. He was born that way. Then I was told that he was one of three kids from the same family, all of them born without eyes. It was a genetic thing. And I thought, 'What were those parents thinking? At what point did they say, okay, this next one's gonna be fine? Jesus Christ."

I guess the same might be said about our family, too, except that in our family, the disease took a very strange and roundabout route. So much so, in fact, often seemingly defying the general rules of genetics, that Tom's family has been asked to be part of a university study.

A few more of us found their way over to the table where we were talking.

"You have cataracts yet?" someone asked. "Yeah" came the answer. Most all of us did. I did, but they weren't bad enough yet to operate on. Others were planning on operations in the near future.

None of us, and thank God for this, drove a car, and most everyone had complaints about the red tape involved in getting, and maintaining, disability benefits (which is something I haven't tried to do yet, and would like to avoid).

"You get the break on your taxes, though, don't you?" Tom asked.

"Yeah," I told him. That much I would do, even though it didn't amount to much.

Normally I avoid the company of the blind as much as possible, and conversations about blind issues, but this was comfortable. I had a beer in hand, with more nearby. It was a perfect day and there was grass underfoot.

More important, this group wasn't self-righteous about it. They weren't doing any chest-pounding about "rights" or forcing movie theaters to be blind-friendly or any such nonsense. We were all just dealing in our own ways with the circumstances that surrounded us.

"People don't get it sometimes," Tom said at one point. "I do most of my seeing with my ears. That's why I avoid going to the bars these days. If the place is loud and I can't hear too well, then I can't see, either."

It made perfect sense, though I'd never heard it expressed in just that way before?or even thought of it in those terms before. It's something that's been making itself more and more evident this year without my even realizing it. I didn't know I was doing it until Tom brought it up. It may also explain why I've been having so much trouble of late hearing people talk. Up until now, I'd attributed it to all those hardcore shows I went to as a youngster.

When I walk down the street?especially if I'm not using the cane the way I should?I'm always listening. I'm listening for footsteps or voices and whether they're in front of me or behind. I'm listening for the grinding of wheels, and whether or not they belong to a stroller, a scooter or one of those damned little carts people drag behind them so they don't have to actually wear their backpacks. I'm listening for approaching traffic, and I'm listening to the slight changes of pitch in all these sounds after they've been reflected off a nearby wall.

I'm using the eyes, too, as I can, but mostly it's the ears that tell me when I should slow down or take a defensive step to the right. If it gets too loud?as it almost always does in bars and on the subway or near busy streets, all that gets thrown right out the window. I have trouble concentrating and get all discombobulated. If there are too many sources of noise around me?general bar noise, other people sitting nearby, the person I'm trying to talk to and music atop it all?I find it hard to remain focused on just one of them.

I don't know if this will make any sense to anyone else, but Tom had done it again.

I stepped away for a moment to grab a beer. (A few moments, actually?it took a while). While my arm was deep in the cooler trawling for another Pabst, my mom snagged me, and introduced me to Luke, the quiet 17-year-old who'd been diagnosed just a few weeks before getting his driver's license. He'd missed the summit over by the picnic table?which is too bad, seeing as it probably would've been more helpful to him than anybody. The symptoms hadn't hit him too hard yet, and he wasn't exactly sure what to expect. He figured driving was out, though.

I sat with him for a while and told him what I could.

"You scared the hell out of him, didn't you?" my sister would ask later. I hope not. He was a good kid, and I saw a bit of myself at his age in him?hiding the fact that he couldn't see from his friends, letting them think he was just clumsy, that sort of thing. One thing that he had going for him, for what it's worth, is that he knows he's got RP. That way at least you know what's going on, and what's coming next. All I had at his age was Uncle Tom's enigmatic warning, "You better start learning Braille now."

The next morning, Tom and his family stopped by my folks' house for a bit.

Before they left, someone asked whether or not the reunion would come up in a column.

"I don't think I dare," I said.

"Yeah," someone said to Tom, "he might call you white trash again, and talk about your sideburns."

"And that I drink beer and watch wrestling." I saw his mood take a downward swing. "You know, I had just about forgotten about that. Until now."