by Andrew DeCanniere
Of all the books that I have read this year, one that stands out from the crowd — and one that will stay with me for a long time to come — is Rebecca Alexander’s brilliantly written, undeniably important, and thoroughly inspiring memoir Not Fade Away (Gotham Books, 2014). In it she recounts, in part, her experiences living with Usher Syndrome type III — a rare genetic disorder that causes progressive hearing and vision loss — with which she was first diagnosed as a teenager. Read on to see what she had to say about her inspiration for writing her memoir, Usher Syndrome, her influences and much more.
UR Chicago Magazine: From the moment I picked up your book, it truly had me hooked. When did you realize you wanted or needed to write about your experiences? What inspired you to write Not Fade Away?
Rebecca Alexander: I think that my hope for the book was that people could read this and understand that it wasn’t just about going deaf and blind. We all face something, whether it’s emotional, physical or psychological. We all deal with something, and this was just sort of my experience dealing with the cards I was dealt. I think that in my own experience of coming to terms with Usher Syndrome, I found that reading other peoples’ memoirs or other peoples’ books about their own experiences with whatever it was that they dealt with — or whatever it was that they were facing, whatever adversity they experienced in their life, even if it was something I hadn’t personally experienced — I always found something in what they said that resonated with me. I think it’s also very important for us to know that we’re not alone in what we deal with, what we struggle with. So far there really had been no voice for the Usher community. Nobody had really written anything about going deaf and blind in this way, and I really wanted to have a voice for us. The only way there’s going to be a cure, the only way there’s going to ever be treatment is if we raise awareness. I don’t think that I was too crazy about the idea of being a poster child for this, but that wasn’t even really my concern. I didn’t care so much about being a poster child as much as I cared about people knowing that they’re not alone and for people to be aware of this condition in the first place.
UR: I think it’s great that you’re getting the word out there. As you say in your book, Ashkenazi genetic disorders are common, but even so, coming from a family of Ashkenazi Jews of Eastern European descent myself — at least on my mom’s side — I hadn’t heard of Usher Syndrome until I came across your book. I’d think that it would enable or encourage more people to come forward, for more of a network to take shape, as well.
RA: There’ve been a lot of people with Usher Syndrome who have reached out in all different parts of the country and all over the world. Someone just messaged me yesterday from London, and he said that he has Usher Syndrome. It was nice to know that, even overseas, he had been able to read the book and relate to it. A lot of these people sort of thanked me for writing something they could relate to, and I think that was really what my purpose was, so it feels good to know that people are receiving it that way.
UR: Even before you’d decided to write about your own experience with the condition, it really seems like you were working to help other students with disabilities. It surprised me that even nowadays it can be so difficult for students to have access to those services that they have a right to.
RA: Yeah. It was something that had to be done. I mean, there wasn’t much that could be done while I was there, but I knew that I couldn’t leave there and just be okay with what was happening. Somebody had to go in there and exact some change. We did. There was a lot that changed, even as I was graduating. They started to take things seriously in terms of services for students with disabilities, so that was good.
UR: You really became this advocate for them.
RA: I don’t even think that I realized that I was at the time. Now I look back and I understand that.
UR: When it comes to your own experience, you started exhibiting symptoms pretty early on, right?
RA: My vision diagnosis actually came at 12, and my hearing diagnosis — or actually the combination of the two, of knowing that I had Usher Syndrome, came when I was about 19. At that time, we knew of Usher Syndrome, but we didn’t know of Usher Syndrome in that way that it presented itself in me. So, we knew that I had Usher Syndrome, but we didn’t know what type.
UR: I think that your book also just really underscores that you need not let Usher Syndrome limit you. You really are the best proof that you can get out there and do whatever it is that you want to do. One of the things that I find really inspiring about you is that while it is part of who you are, you never really let it define you. It doesn’t really seem like you let it define how you live your life or what you do.
RA: Yeah. I think that we sometimes think that we can’t do things because we think of them being done in the most stereotypical way, or you think of them as sort of one-dimensional. When you have a condition like Usher Syndrome, and there are things you want to do, you have to be more creative in your ways of being able to do those things. When I do my CMC races — that’s the Civilian Military Combine race, these extreme endurance races — I’m dealing with my implant and my hearing aid. I’m deciding whether I’m going to wear my hearing aid or my implant. If I’m going to wear my hearing aid, then I need to make sure I have a small plastic bag on me — like a Ziploc — so that when we go swimming in a really cold body of water, I can put my hearing aid inside, dry it off and put my hearing aid back in. So, it’s not necessarily ideal, but it’s something that I make work. I’ve done five of them now. Two races ago, my best friend Caroline — who is in the book — did the race with me, and I just decided not to use my hearing aid at all. It was okay, because we can sign with each other. So, of course I would rather be able to hear everything and see everything, but I was still able to do the race. I’m not trying to win the thing, I’m just trying to do it to challenge myself and to feel as able-bodied as I possibly can.
UR: Speaking of Caroline, you also stress how important having these people in your life — this support system — is to you, but also how it was important to know that you are needed by them.
RA: Well, I think that one of the things that was really important for me to learn and to know is my friends need me as much as I need them. To know that they need me, too. I think that when Caroline’s mom specifically spelled that out for me, that was really important and really meaningful. When you have a condition like mine, you are constantly told by people how wonderful your friends are to be there for you and to help you, almost like you’re lucky that you have these caretakers. You’re lucky that you have people who will be patient enough to hang out with you. You know? It almost makes it feel like you’re sort of a burden, so it was really wonderful and important for me when Caroline’s mom told me how much our relationship means to her, how much my being in her life changed her life as well — that she was not in a very good place before we’d met and our relationship helped her face her fears and live her life. It was so important for me to hear that from someone, because one thing I hear all the time is how much everybody does for me and how lucky I am to have them, so it’s really nice to know that people feel lucky to have me, as well.
UR: Right. It’s a two-way street. I thought that was just such a great point. In reading your book, I was also struck by what terrific insight it provides for people who may not be hard of hearing, visually impaired, blind or deaf. For instance, you talk about your experience qualifying for a cochlear implant — having to go through yet another series of tests, having to make the decision to get the implant, and experiencing hearing with the implant for the first time.
RA: Yeah. I was implanted a year ago in May. Before I was implanted, I had 28 percent discrimination in my right ear with a hearing aid, and without a hearing aid I had 26 percent. So, clearly the hearing aid wasn’t doing me much good. About a week-and-a-half or two weeks ago, I finally had my one year evaluation, and my discrimination was 92 to 94 percent, so it has been a dramatic difference. I mean, there was a lot of work to do with listening therapy, but it was definitely well worth it.
UR: And, as you say, to people who don’t know about cochlear implants firsthand, it can seem so simple. Almost oversimplified, really. As you say, there are all those YouTube videos out there. If you simply watch those and know nothing else of the process, it looks easy, relatively speaking. In actuality, it seems like it’s pretty involved and there seem to be lots of considerations — whether it’s deciding whether to go ahead and get an implant or not, to the type of implant to choose.
RA: Oh, yeah. And there’s a lot of listening therapy. That was one of the things that I mentioned in some of my interviews. We see these YouTube videos of people having their implants turned on for the first time. We see babies who smile or a woman who hears sound for the first time, and she cries or whatever, and then the video stops. It’s not like these people are hearing sound the way that we hear regular sound. They’re clearly hearing something, but it’s a long process and it takes a lot of work, and it can be incredibly worthwhile. I mean there are some people who don’t necessarily benefit from it, but I think that it’s important for people to know when you get a cochlear implant that it doesn’t mean ‘Ta-da! Your hearing has been cured.’ It’s a lot of work and it’s digital hearing, so it’s very different for your brain to process. I think it’s important for people to understand that.
UR: You’d mentioned that a major motivation for writing Not Fade Away really was to raise awareness about Usher Syndrome. What would you most hope for people to take away from the book?
RA: I want people to know that this book is for everyone, not just people who have disabilities. I think anyone can relate to this. My biggest message is you’re not alone. Whatever you face, whatever you’re dealing with, we all have something to learn from each other. I know that I learn from other people. I learn from my patients all the time. I hope that people will read the book and be open-minded to it. I think it’s important for us to expose ourselves to disability a little bit. I think that there is a lot of discomfort with disability itself, because it sort of reminds us of our own mortality or morbidity and that scares us. I want to continue raising awareness about how best to handle situations when you’re dealing with someone with a disability.
People will often ask me whether they should help a blind person if they see them walking down the street. If somebody’s not struggling, why would you help them? You know, everyone is trying to maintain as much independence as possible. If you see someone who has a cane and they’re struggling and they look like they’re lost or like they’re not able to get themselves across the street effectively, instead of watching and hoping that they can manage it, or try to figure out whether they can end up doing it right, offer them an arm. Offer to help them. It’s just like anybody. If you see anybody struggling or having difficulty, you want to offer them help.
UR: Finally, who are your influences, personally, literarily or both?
RA: I think that I have had a tremendous amount of influence from my mom, my stepmom, and my grandmothers. When people say ‘Well, what inspires you?’ or ‘Who inspires you?’ I always say that I’m always inspired by the people I see on a daily basis who are kind to others, who are patient with others, who offer help or are generous and do it when nobody else is looking, just out of the kindness of who they are and the understanding that we are all kind of in this humanity together. I think at the root of it all is that we all need to help each other, to be patient, to be open-minded. I find inspiration from people around me all the time, just seeing the way that they interact with others, especially when they do it with sensitivity, with love, and when they do it with just pure honest goodness, instead of trying to get something out of the situation — someone doing something that’s selfless.
Rebecca Alexander is a psychotherapist, extreme athlete, and activist. She grew up in Northern California and holds two master’s degrees from Columbia University. She lives in New York City with her mini goldendoodle, Olive.
For additional information about Rebecca and her memoir, Not Fade Away (Gotham Books, 2014), visit her website at www.rebalexander.com, where you can also find upcoming events and links to information about Usher Syndrome from sources like the National Institutes of Health (NIH), the Usher III Initiative, the Foundation Fighting Blindness and the Usher Syndrome Coalition. You can also find her on Facebook and on Twitter at @Reb_Alexander.
This interview was originally published in Chicago Splash Magazine.