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My sister Rebecca is the most impressive person I know. Looking at her, you'd have no idea she has a disability. But her world is rapidly changing because of a cruel disorder, Usher Syndrome type III, that is causing her to go blind and deaf. Diagnosed at the age of 13, Rebecca is now 35 and is the face of courage. She's sharing her story in a new book, "Not Fade Away," and she sat down with me to share the latest on her health and what lies ahead.
Peter Alexander: Before your cochlear implant [last year], you said, 'I'm not scared. I'm more sad.' How do you feel now?
Rebecca Alexander: I feel like moving forward. I think it's sad every time you have to take that next step into this process of losing more vision and losing more hearing, but I don't feel sad anymore about it. I don't have time to waste on that anymore.
Peter: Before the surgery, you heard, like one out of every four things said to you? Now it's closer to three out of four — that's pretty good?
Peter: Now that you can hear more than you could before, how has it affected you?
Rebecca: Well, it's interesting because getting a cochlear implant makes life easier in terms of hearing. But it's still a lot of work, and I think it's important for that to be said, and for people to know that it really does require a lot of work to re-learn how to hear.
Peter: I want to talk a little bit about vision...You see 10 degrees?
Rebecca: Straight ahead. So a normally-sighted person sees 180 degrees, and I see just 10. It's definitely a trip to walk down the street and have no idea that somebody's walking alongside of you. And then all of a sudden they come into your field of vision and you're like, where did you come from?
Peter: Your friends are good sports about this, but I bet when you're talking to strangers, it's gotta be tough.
Rebecca: Yeah. In the past, it wasn't something that I really needed to share, necessarily. And now I'm much more forward and forthcoming about saying, 'I'm sorry, I didn't hear you. I'm hearing impaired.'
Peter: Several years ago, you basically tried to ignore it and just hope people didn't see it or find out. Now, you're obviously more comfortable with your disability — it doesn't define you, but why waste time not telling people if it can make your life easier, right?
Rebecca: Right. When I leave for home from work, and it's dark out, I used to walk slowly and somebody would probably look at me and think, there's something off. And now when I walk down the street, I use my cane.
Rebecca: I think I didn't have a choice...I remember, one night I was walking to my office, and I didn't have my cane. And I walked literally right into an iron gate. And so I thought to myself, really? You're going to put your entire life in danger just because you don't want people to see you with the cane? I mean, it takes so much more energy to try to hide something than it does to actually accept it.
Peter: What things do you miss?
Rebecca: I miss driving. I miss being able to go out at night and just not even think twice about which direction I need to go or whether I need someone to be with me. I miss a little bit of the independence. But the reality is that if there's something that I really want to do, I end up doing it. And if I have to bring someone with me to do it, then you know, that's the way my life is now. But I'm still doing the activities that I set out to do.
Peter: Hasn't stopped you?
Rebecca: No, definitely not.
Peter: People don't pity you, but they say, 'I'm so sorry for what you're going through.' You always say to me, 'I don't have time to be sorry for myself.' You don't waste time with that?
Rebecca: We have all these reminders that we're not pretty enough or thin enough or we don't have the best job or whatever it is, instead of focusing on all the things we do have and are capable of. And it feels so much better to focus on the things that you can do. Why do we spend so much time focusing on things we can't?
Peter: You were roughly 12 when you got the diagnosis... It wasn't until you were in college that you really understood what doctors were saying, that you were going to go blind and deaf. Do you remember what that felt like, learning that?
Rebecca: When I first learned, or when I got that official diagnosis, I was alone, and it was a really snowy, ugly day at the University of Michigan. And I remember walking back to my doctor from the medical campus and just thinking, 'What do I do now?'...But it's incredible how in the last 15 years, how much my life has changed. And it's actually better. I mean, it's funny that I could have a lot less vision and a lot less hearing, and be a lot happier.
Peter: Why are you so much happier?
Rebecca: I think coming to terms with something like this, accepting it and not trying to hide it, and not having it control my life but really taking the control back by still living my life to the best of my ability, asking people for help when I need it — that's been a huge part of it.
Peter: You're a psychotherapist — you've made your life helping others. Why is it so important?
Rebecca: I think that we all need help...It's really important for people to be able to recognize when they need help. And so, to be there for someone when they get to that place and they're asking for help, it feels really good to be the person at the gate, greeting them and saying, 'It's ok.'
This Q&A has been edited for clarity and length.