In my last post, I talked a little about my brother Rob who was deaf from birth. I’d like to share more about what life was like growing up with him and my other six siblings in St. Paul, Minnesota. I realize that not every family had circumstances as daunting as ours, six kids, one of them deaf, being raised by a single parent. It’s just not your run of the mill story. There’s enough funny, touching and memorable stories that I am working on for my next book. It will about the house I grew up in on Portland Avenue.
Before I begin talking about any of this, I feel a disclaimer is in order. Please understand that I am writing this as a hearing person who loved his deaf brother. I don’t know the first thing about his experience and, in trying to describe my side of the story, I hope to in no way offend anyone with hearing issues. So if I use an incorrect or insensitive term, it is strictly by accident. I am simply writing to share our common story of growing up with deafness. Rob and I had a tight relationship, and he was a huge advocate for deaf rights, culture and awareness.
I might further add that as I age, it has become apparent that I need a hearing aid. We’re actually saving money in our HSA to buy one this year. So in an ironic twist of fate, I am becoming more like him than I ever knew. I’ve also been diagnosed with pulsatile tinnitus in my right ear, for the past six years or so. My years of too many rock concerts are catching up to me. Ask anyone in my family if I have hearing issues and they’ll all agree. I think it’s time to brush up on my ASL.
Shortly after his birth contracted a blood infection (sceptisemia). Because of this infection, he began to run a very high fever for an extended period of time,. The thought is that this may have, in part, contributed to his deafness. The other possibility was one of the medications he was given during that time was later determined to cause deafness in some patients. No one is sure which combination it was, but for a while he was in critical condition – life threatening – but he made it through. By the grace of God, he made it through.
Of course no one knew about his hearing loss for a few years. I think my mom and dad clued in kind of early when he was an active, wild two year old. He didn’t respond to verbal direction and correction like other kids. Once his hearing was tested, it all kind of made sense. He wasn’t just an unruly kid; he simply couldn’t hear anyone telling him much of anything.
Rob was fitted with a hearing aid shortly after entering grade school. It was an “old school” hearing aid. It had a body harness that strapped the two-inch by one-inch receiver to his chest and an accompanying corded earpiece. It was the ugliest most beautiful piece of technology I’d ever seen. For all of its uncomfortable failings, it brought to Rob things he’d never heard before. Despite being outrageously expensive at the time, you really can’t put a price on what it gave him. It gave him a fuller life as a child. He was my brother and I used to get so angry at anyone who would make fun of him or the device. Kids can be so heartless, sometimes.
I’m not sure of Rob’s exact numbers as far as his hearing loss. I seem to recall that one ear was worse than the other. I remember mom saying that he had about a 75% loss without his hearing aids, and that was reduced to about a 25% loss with them. I should know the exact numbers, but I don’t. I should know what my loss is too, but I don’t. I’m not a big numbers guy. I only know that in conversation this past weekend someone was talking about a Lighthouse and I was wondering why we were talking about the White House. I need to see my audiologist.
Rob went through the same Catholic school system we did in grade school. Back then it was called the politically incorrect term “mainstreaming.” Rob was always a pretty good student. Not an A student (nor was I) but a solid B student. The teachers loved him, he was an extrovert, a schmoozer and very easy to like. Other than a special speech class, he was treated very much like the rest of the kids in his classes.
So, that’s how it began. Next time, a little more about our home life.