Living with Usher Syndrome: A Partner's Perspective
April 3, 2014
by Megan Sullivan
Megan Sullivan is Associate Dean for Faculty Research and Development and Director of the Center for Interdisciplinary Teaching and Learning at Boston University. She has taught at BU for 18 years now, and she has also published one book, one collection of interviews and dozens of articles and essays. Megan is married to Carl Richardson, who is the ADA Coordinator for the Massachusetts State House. She can be reached at email@example.com.
I don’t live with Usher syndrome. Not really. My husband does, so I’m a bit like a not-so-silent bystander watching and participating in his journey. I read Mark’s latest blog post with interest and had two reactions: I thought Mark’s words were generous and brave and smart, and I also thought parents and families might want to hear from a person who lives with an adult who has Usher syndrome. Parents and families could then imagine what their children’s and family member’s lives might be like someday. This is a tall order, as my husband is more than merely a case-study in Usher syndrome; he is one of the most unique men I’ve ever met. Carl is smart and funny (albeit not as funny as he thinks he is), hardworking, responsible and still handsome at forty-seven. Carl’s career means he advocates all day, every day for people with disabilities. Perhaps because of this, he is circumspect about how he understands his own; Carl’s view is everybody has something to contend with, and there are disabilities far harder to navigate on a daily basis than Usher syndrome.
Carl was raised with a sister who also has Usher’s (Annie is married, has three children, and a career she enjoys); and by parents who were incredibly devoted to their children and who raised Carl and his sister to do what they could and to believe they would lead happy and fulfilling lives, just as would their siblings who did not have Usher syndrome. Carl and I were a bit older when we met; he was thirty-five, and I was thirty-eight. We both had spent time developing our careers, traveling, and enjoying life with friends and family. Carl had always assumed he would get married someday, while I didn’t necessarily believe I would partner for life. I had been raised by a single parent, so marriage didn’t necessarily seem the norm to me. I also wanted to continue to be a writer and teacher; I thought marriage would take too much time away from these pursuits. And then I met Carl, and I couldn’t imagine notpartnering for life with him. This September we’ll be married for ten years. Like all marriages, ours has been shaped and molded in accordance with our separate and distinct personalities. We’ve learned to contend with each other’s foibles: Carl has worked hard to keep our house as neat and clean as I like, and I have endeavored not to notice the electronic gadgets and computer wires that breed like mold in our basement. We’re also reminded daily of our shared commitments – to each other, to our families, and to our vision for our community and world. I think it’s these shared commitments that keep us so connected; we believe in the same things, and we want the same outcomes.
So what does all this mean for Usher syndrome? Perhaps paradoxically, it means everything and nothing. Maybe that’s what Mark meant when he wrote in his blog that his sadness had everything to do with Usher’s and, I presumed, nothing to do with it. Living with somebody who has Usher syndrome is one of the defining characteristics of a family’s life and at the same time one of the least consequential. The fact that Carl is hearing impaired (he wears two hearing aids) and visually impaired (he was declared legally blind at 28; is on his second guide dog; and loses more of his sight every year), certainly informs our daily life. Carl sometimes gets frustrated and tired; I imagine it is physically exhausting to work so hard to see and hear all day, every day. I imagine it is emotionally demanding to work so hard all day, every day to reassure non-disabled people that despite what they might believe, your life is just as good and full and irksome as is the next person’s. Although Carl works hard not to let it, his frustration affects us. He can be quick tempered and inpatient. I can be moody and sensitive. His temper and my sensitivity have something to do with his disability, but they also have nothing to do with it: we are individuals, and our personalities are what they are. Carl was unemployed for a while early in our marriage, and his unemployment had a lot to do with his disability; unemployment affect all members of a family, so that was a challenge for us. Usher syndrome means Carl no longer drives, so even though I have never liked to navigate the roads, I now do it all. This is not ideal, but then again I don’t have a house overlooking Big Sur like I once dreamed I would either. Finally, Carl and I don’t have children, but that’s much more my decision than his, and it has much less to do with Usher syndrome. Just as I never assumed I’d marry, I also never had the desire to give birth. Add to that the fact that I’ve always been a very responsible person – I’ve always done a lot for and with my family, friends and community – and you’ll understand why I didn’t necessarily want the responsibilities I knew parenthood would bring. Would I have had children with Carl if I had wanted them? Absolutely. Would I have known that Carl would have been a fantastic father and that I would nevertheless have had more than my share of the child rearing responsibilities? Yes to that as well. But do you see what I mean? Usher syndrome has something and nothing to do with any of this.
Six months after Carl asked me to move into his Cleveland Circle apartment with him, we discussed marriage. Because I knew that in the not-too-distant future he would definitely lose all his eyesight, I asked Carl what he would do if he also lost all of his hearing. (Carl is diagnosed with Usher syndrome II, so he is not “supposed” to completely lose his hearing, but one never knows.) As befits his personality, Carl was matter-of-fact. He’d deal with it, he said. At the time, his response struck me as unsatisfactory. How exactly would he “deal” with it? Would he get a Cochlear implant? Would that suffice? Would he still be able to work, and how would he listen to his beloved books? If we got married how would I communicate with him? How would I just “deal” with the fact that my husband had neither eyesight nor hearing?
It has been over eleven years now since Carl and I had that discussion. I no longer worry about whether and what we will do if Carl loses his hearing; I think about it sometimes, but I don’t worry about it. Partly this is because we’ve taken sign language classes; partly it is because we know people who have had success with Cochlear implants. It is also because I know that if it happens, I’ll deal with it. Carl and I will deal with it together because that’s what you do in a marriage and when you love someone. You deal with whatever comes along, and you know it will be fine. And by some miracle it is.