March 4, 2018

My Uncle Tom


My first book opened with an anecdote about my Uncle Tom Gaustad. It’s a story I’ve told too many times since, but for the record back in the mid Seventies he approached me while I was sitting alone off to the side at my Grandma Myrt’s funeral. He said simply, “You better start learning Braille now.”

            I was twelve years old at the time, and just thought Tom was being weird and creepy. Who the hell says something like that to a kid? And at a funeral, no less? I excused myself and tried to avoid him for the rest of the afternoon.

            I had a hard time getting a handle on my Uncle Tom when I was a kid. He was my mom’s younger brother, and I always played with his kids, my cousins Timmy and Tammy, whenever we traveled to northwestern Wisconsin to visit the extended family. Most of my other uncles on that side of the family, to be honest, were pretty easy to figure out, but Tom was a tricky one. He was a beefy guy with long hair and glasses, and I remember him and my dad getting into political debates, though I forget what about. I knew back then his eyes were as bad as mine if not worse, but didn’t grasp the larger implications until much later. In general he didn’t talk a whole lot, but when he did he revealed he had a very sharp and cynical sense of humor. My mom had told me he was incredibly bright, that he read a lot, but I don’t ever remember him making a show of it. Maybe, I wondered later, as part of a large rural Midwestern family, being smart was something you simply learned to keep under wraps. Having known other people in a similar situation, I had to wonder if circumstance and geography had left him with no viable outlet for his intelligence, and how frustrating that must have been.

            But all that only came up later. In that opening anecdote, I grossly mischaracterized him based on my own shaky childhood recollections and the stories I’d heard, all but dismissing him as common trailer trash. Right before I gave a reading in Minneapolis on that first book tour, Tom, who had already read the book and had driven an hour to be there, materialized out of the crowd. He came up behind me, wrapped a big arm around my throat, drew me in close, and whispered, “I’m gonna kick your ass.”

            My mom had warned me beforehand something like this might happen, so in response I passed along her message—namely that if he laid a finger on me, she was going to beat the shit out of him. He seemed to take the threat seriously. Nevertheless, before the reading got underway, I did offer a sincere public apology for what I’d said about him in the book.

            From that point on I felt a certain bond with Uncle tom that I never recognized as a kid. He was, after all, the one who knew I had retinitis pigmentosa same as him, and diagnosed me a dozen years before the professionals got around to it. I don’t even know if he knew about retinitis pigmentosa back then, but he knew I was going blind and knew exactly how it would happen.

            My mom told me recently that Tom’s health, which hadn’t been good for several years now, had taken a bad turn. My first thought was that I wish I’d kept in touch with him the way I planned to, but didn’t. That’s my fault and my regret. In the years since that reading in Minneapolis, I only saw him a handful of times, but they were all worthwhile. And he always had something to teach me about the realities of blindness.

            At a family reunion in Green Bay in 2003, I found myself at a picnic table with the seven or eight people on my mom’s side of the family with RP. So it was me, Tom, and a smattering of cousins and cousin’s kids, all of us blind or going blind. How we all found our way to that table is anyone’s guess.

            Tom, who still had long hair and glasses, was our Blindo Patriarch. He knew all about the insidious and deceptive way the disease can progress, he was familiar with the nation’s few braille schools and why they were a waste of time, he knew all the ins and outs of Social Security, and he had experienced first hand the hapless uselessness of most state blindo agencies. Some of these things I knew already, some I would learn later, but as usual he was a few steps ahead, already having come through the other side. I was glad some of the kids at the table, some as young as fourteen, were starting to hear about some of it now, and hoped they paid better attention than I did.

            “I don’t go to bars anymore,” I remember him telling me that afternoon. “They’re too loud, and if I can’t hear, I can’t see.”

            It was a simple bit of profound wisdom about the phenomenology of blindness that’s never left me. We depend on our ears as central navigation tools, and if I find myself in an environment that’s too loud to discern voices let alone slight changes in pitch, I’m completely lost. It was something I’d been aware of for a very long time by that point, but I had never heard it expressed quite so elegantly.

            A couple of years after the reunion, I ran into Tom again at my brother-in-law’s funeral. After the service, I found him standing alone against a wall outside the bathrooms.

            “Most of my experience these days,” he said, “involves people leaning me against walls and telling me not to move until they come back. I do a lot of leaning against walls and waiting.”

            Yeah, gotta say he was pretty much on the mark about that little reality, too.

            The last time I saw him was at my dad’s funeral in 2013. It only occurs to me now that most of my dealings with Tom took place at funerals. In the intervening years he’d had a few accidents and was stuck in a wheelchair. I was in the lobby of the church before the service began when Tom’s wife, my Aunt Sandy, grabbed me and brought me over to him. Maybe I was reading too much into it, but I had the impression he was happy to see me. I was certainly happy to see him. (Well, you know, “see.”)

            His voice was tired and raspy, and he suddenly seemed much older than he should have. But he was still Tom. I crouched down next to the wheelchair and leaned in close so I could hear him beneath the din of voices in the lobby. He said, “I don’t know who’s in worse shape, you or me.”

            I had to laugh at that. “Yeah, Uncle Tom, I can pretty well say you got me beat on that one. At least for now.”

            Weird thing is, although most of what we talked about was blind-centric, I never thought of Tom as blind. More like someone who just happened to know quite a bit about the experience. Which again has me regretting not staying in touch with him between funerals. I would have liked to get his thoughts on a few other things as well. I always had the sense the bond I felt went deeper than mere eye disease, that like me he found he didn’t think like the rest of the people in the family, but again was left with no viable outlets. I think it might have been interesting for both us outsiders to share notes.

            Well, Tom, I know you and Aunt Sandy used to read this column pretty regularly, but don’t know if you’ll see or hear this one. I hope you do, just so you know how much I respect the hell out of you. You taught me quite a bit over the years, some of it before I knew enough to listen. But ain’t that always the case? Anyway, sorry to be sappy—I tend not to be the sappy type and I don’t think you are either—but this one’s for you, you crazy blindo nut, you.


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