EPISODE EIGHT: REBECCA ALEXANDER

Rebecca Alexander is an author, psychotherapist, extreme athlete, advocate and she has a rare genetic disorder called Ushers syndrome. Ushers syndrome for Rebecca means she has been losing both her sight and hearing since she was a teenager. Despite these extreme challenges, Rebecca has gone on to live a very full and active life, becoming a successful New York City therapist, group fitness instructor, motivational speaker and disability rights advocate. She shares what it has been like to navigate life while facing deteriorating sight and hearing. Rebecca shares what the pandemic means for her community and what she's learned about asking for, and offering help.

Transcript:

SUMMARY KEYWORDS

people, vision, implanted, hearing, rebecca, ears, hear, losing, called, disability, cane, book, create, ability, blind, diagnosis, offer, deaf, life, incredible

SPEAKERS

Rebecca Alexander, Alison Hall

Alison Hall 00:09

You're listening to between headlines. I'm Alison Hall. For today's episode of between headlines I spoke with Rebecca Alexander. Rebecca is an author, therapist, athlete and advocate, and she happens to be almost completely blind and deaf. Rebecca was diagnosed with a disease called Usher Syndrome when she was in college after struggling with deteriorating vision and hearing for years, she was told that by age 30, she would be completely blind. Rebecca is now a successful therapist in private practice in New York City, a group fitness instructor and extreme athlete she's biked 600 miles between San Francisco and La swum the waters of Alcatraz and climbed Mount Kilimanjaro. Rebecca's book not fade away is an incredible memoir and portrait of a young woman coming to terms with incredible challenges while facing life head on with remarkable humor, spirit and determination. In her book, she details falling out of a second story window nearly paralyzing her and reframing her relationship with her physical and internal strength. I learned about Rebecca after reading a New Yorker article about how people who are hearing and vision impaired are affected by the pandemic. Rebecca shares what it's like to navigate the city as a person who is hard of hearing and nearly blind both in normal times. And in the middle of the isolating social distancing time of COVID-19. Rebecca talks about the importance of sitting with the uncomfortable why we should all both ask for and offer help and how she has used her physical strength to build her mental strength. I learned a lot from Rebecca, you're learn why I refrain from calling her an inspiration. But you'll also learn why she has had an impact on so many people in terms of representation, courage and compassion. Now, on to my chat with Rebecca. When did you first learn about your Asher's diagnosis? And what was that process like for you?

Rebecca Alexander 02:28

Sure. So I was diagnosed actually, first with retinitis pigmentosa or RP, which is the vision part of my condition. So I was having difficulty seeing the blackboard at school when I was 12. I told my dad, he took me to an optometrist, and the optometrist said that his equipment wasn't sophisticated to identify that there was something in the back of my I didn't know what it was. So he sent us to an ophthalmologist, I was born and raised in the San Francisco Bay Area. We went to UCSF, and we went to Stanford and I went through a very long winded slew of tests at both institutions. And they both confirmed that I had a genetic condition that was causing me to lose my vision called retinitis pigmentosa, and that by the time I was an adult, I would be blind. So that was when I was 12. And I had what's known as like a cookie bite of hearing loss. When I was younger, I used to watch TV out of the corner of my left thigh and my parents and always thought that it was just sort of like a funny Quirk, we didn't quite know at the time that my left ear was actually my stronger ear. And so I was just sort of making do with what I had, it was sort of a superimposed way of adjusting to the hearing loss I must have had in my right ear. And so we thought it was because I had frequent ear infections that maybe I had what, again, what they called a cookie bite of hearing loss. And it wasn't until I was about 19, I was at the University of Michigan and I woke up one morning with really loud ringing in my ears. And this sensation was known as tinnitus or tinnitus. There's no right or wrong way of saying it. And after about a week or so it wasn't going away. Oftentimes, people who go to really loud concerts, musicians, war veterans, when they come back from, you know, being in combat, and they've been exposed to really loud sounds, they experience tinnitus, which was what I had. And so I decided I needed to get it checked out. And I went to an otolaryngologist, which is just a more sort of sophisticated ear, nose and throat doctor at the University of Michigan. And they said, Rebecca, you don't just have RP, you have something called Usher Syndrome. We've never actually seen it as it presents itself in you, but because you have both progressive vision and hearing loss, it can't be anything else. So I received the full diagnosis at about 19. I think that maybe my mom had heard something before then. But of course what I remember and what the actual, you know, facts of how the, you know, the diagnosis came whether it was to me or my parents may be a little bit different, but that's how I remember it. Now, that was 20 years ago, 1520 years ago. I mean, that must have been devastating and terrifying knowing that it would get worse. And so today like, how is your hearing? And how is your sight? Yeah. So, you know, when you get a diagnosis at the age of 19, and you're in college, and you're told that you're going to be deaf and blind by the time you're an adult, first of all, when, when is when do you become an adult, I think we're all sort of pretending to be adults most of the time anyway. And I'm 41 now. But so it was a pretty overwhelming diagnosis, I was far from home. And now, you know, from that time, until now, my life has changed considerably. I now am cochlear implanted in both ears. I learned sign language when I was in college at the University of Michigan. So that was, you know, a big part of the process of me coming to terms with at the time losing my hearing, I never knew that I would ever be a cochlear implant candidate because there was no, again, when I was diagnosed, there was they didn't even know the type of Usher Syndrome I had, I didn't have a trajectory. They said they thought by the time I was 30, I would be completely blind, but nobody could really tell me. And so the normally sighted person has about 180 degrees of vision when looking straight ahead. And I have somewhere between about 10 to 12 degrees of my central central most vision. I happen to have donut vision. Most people with RP, the vision part of what I have have tunnel vision. So they lose their periphery, and then their central vision. And I have this very sliver of small sliver of vision in my outermost periphery where I see my hands. And then I have this big donut where I don't have vision. And then this very small part of my central vision that I do have, I would have thought donut meant, like you see through the hole, but you see around it, and then it's blocked where the donut is. Exactly, yeah. Wow. And has it gotten worse over the last since you were diagnosed? Yeah, definitely. I mean, I used to drive I never drove at night. But I no longer drive. I very much live in New York City because I have Usher Syndrome. I mean, I loved New York City. I was always fascinated with it before I ever moved here. But certainly, I lived in Los Angeles before I moved to New York. And specifically because I knew that I was going to have to stop driving at some point. I love driving. I'm fiercely independent. And this was before we had ride sharing before Uber before left before anything that made maintaining your independence and more spread out rural areas more accessible. So moving to New York City made me feel like I would be in the same boat as everybody else where most people didn't drive. They use public transportation to get around. So I applied for graduate school here and moved to New York in 2002. And still here. Yeah,

Alison Hall 08:06

I love New York, so much as well, for so many reasons. And I have to admit, I am sure you get this a lot. When I first learned about why you moved to New York, I thought like wow, I mean, New York is a pretty scary place, like even just, you know, manholes and those cellar doors and the traffic and the people. Like how do you navigate that. And then I actually learned that a lot of people with either Asher's or other deaf blind issues, they find New York to be a place where they can have independence. Like, can you talk about that? And why?

Rebecca Alexander 08:41

You know, I think that it one of the biggest things that we all crave is independence and our ability to do things without having to rely on others. We want to be able to come and go as we please. And it's one thing I think to progressively be losing something like your vision, your hearing, as opposed to having been born without vision and hearing how you adjust and adapt to the world. Going from being someone with a disease without a disability to being someone with a disability. There's a coming out, I think phase of it, just like there is for so many people with whatever it is that we're facing. I think that for so many of us being here, you know, the more densely populated an area is, the more services are available to people with all different types of needs. I also liked being one in the crowd. I went to a very large University, University of Michigan with over 40,000 kids and I always loved being sort of lost and being a number in the crowd. I like drawing attention to myself so much and so I felt like coming to terms with my vision loss and being in a city where there are so many people moving and going and doing despite all the obstacles would be a really good place for me to be to be able to just blend in and not draw so much attention to myself. And you know, when I first started using my cane, and you know, that whole process again of coming out as someone with a disability walking down the street, using a blind person's cane and crying in New York City doesn't look that unusual. So I didn't draw that much attention to myself, I don't think but yeah, I think that the services provided were much the remaining more here than then maybe in other parts of the country, it seems like with shows like the deteriorating deteriorating nature of it in the time that you have gotten a handle on the disability and on how to navigate life at the same time, you're losing parts of yourself or parts of your experiences. Can you talk about that? Like I imagine at the beginning, it was difficult as you're losing various like aspects of your sight and hearing. But then you're also learning, okay, this is how I'm going to adapt. This is how I'm going to figure things out. But then it's getting worse. Like, how can you talk about that balance? I mean, I think that living with a condition that is comprised of progressive loss, is really like living with this tremendous sense of grief. You know, that I think that many people look at me, and they see that I'm, like, so motivated and driven and this powerhouse, professionally, and personally, and I'm all of those things. But part of the reason why I'm all those things is because I allow myself to experience the loss and mourn the loss. I really allow myself to feel I mean, remember, I'm a psychotherapist. So that's it sort of comes more naturally, to me, it certainly is not easy. It's definitely very uncomfortable. But it's incredibly humbling. It makes me so appreciative for what I have, I think that we often times, particularly in this day and age, we have no idea how fortunate we are, we take so many things for granted, even just being able to scroll through social media, you know, now everybody's using tik tok, and Instagram and all of these different forms of Snapchat all these different forms of media outlets. And they don't even think twice of how much they rely on their vision and their hearing to be able to access this information. And it's not information that it connects us to the others and the world. And so I think that when you're living with a condition that challenges that ability to connect, it means that you really have to focus so much more on connecting with the things that are important to you, and B, figure out ways to be creative and make things work. So yeah, it's definitely been an adjustment process. And it is a constant state of change. I know you wrote in your book about getting one cochlear implant, you now have to has that helped. Yeah. So, you know, cochlear implants are for someone like me, we're really life changing. I think that sometimes we think that if somebody stuff well, why wouldn't they just go get a cochlear implant and you do have to be a candidate. Learning how to hear is an odd is an auditory skill that you learn at a young age. And if you don't learn at a young age, how to hear whether with hearing aids or with the system technology, you can't just go and get implanted. So I was an ideal candidate, because I did pretty much have normal hearing and then progressively lost it. So I knew how to relearn how to hear digitally, getting the first implant was far more dramatic than getting the second because I had my worst ear implanted. I grew up with everybody speaking and walking on my left side, I used the phone with my left side only. And then when I got my writer implanted, because it was my worst fear. And I developed the ability to hear it's a lot of listening therapy a lot, a lot of practice tremendous amount of work very much worth that. But definitely not an overnight ordeal of just getting implanted in hearing. But that year before I was implanted at 26% discrimination without a hearing aid and 28% discrimination with the hearing aid 28% of the time, I could accurately repeat back what was spoken to me. So I was missing a lot and struggling a lot. And after that surgery, and about a year of being tested, I was somewhere between like 89 to 98%, depending on the you know, the situation, the environment. So that's dramatic. It's life changing for me. And so but then when I got the second year, it was sort of like having surround sound so that I could locate when someone called my name, I was able to better locate where that sound was coming from. So yeah, getting cochlear implanted was definitely a huge process. There was a big learning curve to learn how to hear digitally and it also meant that I had to give up my residual hearing so that without my implants I am completely deaf now which as you can appreciate in New York City, nobody sleeps better than I do. But it's it's definitely an adjustment particularly like when you have a dog and you realize, you know, I remember the first time when I had No implants on and I looked over and I saw my dog barking and realized that I could not hear her at all that that was, it was jarring, it was a bit eye opening, no pun intended just to sort of recognize that that shift. And something that you spoke about in your book as well was the idea of taking out your hearing aids. And I imagine now maybe taking out the implants, and actually finding peace Finally, in that silence, like, how long did it take you to realize that that piece was actually something that you enjoyed?

Alison Hall 15:34

And is it still something that you enjoy and find, like relaxing to do?

Rebecca Alexander 15:39

Yeah, so you know, there, there are a lot of struggles that you face when you have vision and hearing loss. But I have to tell you, the biggest perk and my most appreciated, new ability is to have complete silence. Silence is my religion. It is the one thing you know, if I have somebody who cancels last minute, or if I need to focus on something, the first thing I do is I take my ears off. And you know, there's the internal peace that's implanted. And then there's the external piece that I wear on the outside of my head and being able to there's no way to describe to people just how incredible it is to have that peace and that silence to be able to have that focus without having my ears on. So when I don't need to hear it is definitely probably the first thing I do to create a sense of calm and peace in my life is to take my ears off. And I also think that being able to not have to rely so heavily on sound. I think some people rely so heavily on sound to find calm, people have a very hard time sitting with their own thoughts and being with themselves. And I'm very grateful that having had this surgery and now not being able to hear without my implants really affords me the ability to find comfort and being just with myself. And lastly, you know, having cochlear implants, when you are hearing all day, there's such a thing as auditory fatigue, which just basically means that you know, your auditory nerve is stimulated for so long that at some point, you do just want to take your ears off so you can relax from working so hard to hear.

Alison Hall 17:13

Right? I mean, yeah, so many people have issues, you probably hear about it a lot in your practice with just sitting with their own thoughts. And that's why we often turn to Instagram or tik tok, or Twitter are all of these places where we're looking to connect and just scroll and scroll them to scroll, because we can't just simply sit. That's interesting. I mean, now I wish that I could just take my ears off and have some peace and put my phone away. You talk about the grieving process and how you obviously learned how to do this throughout your life, but also with your training as a therapist, like what does sitting with your thoughts look like and sitting with your grief, of losing various parts of your sight and hearing over the years look like to you?

Rebecca Alexander 17:57

Well, it's taken a lot of practice, it's taken a lot of consciousness to do it, you know, so many of us are looking for that quick fix or way out. And I am no no exception to that rule. You know, when I first got my diagnosis, at around 19, I, you know, it was getting to be it was close to my 20th birthday. And then I was getting to my 21st birthday. And at the time, I think that I had this superficial way of trying to create some sense of control, because I was just given this diagnosis about something that was so completely out of my control. And so I developed disordered eating, I felt like if I could make my body as physically perfect as possible. And if I could be as academically perfect as possible that nobody would know that there was anything quote wrong with me. And it was obviously my first instinct to just create some way of trying to have some semblance of control. In my life, when I felt like there was this was something that was so much bigger than me. And over time. And you know, being a therapist, I've been through a million hours of therapy myself, which I'm so grateful for. But I've done so much of this self exploration process just through reading and trying to learn more about the human condition really. And so I will say that for me, it's been about developing the ability to be uncomfortable, developing comfort with discomfort. And I think that we all have a tremendously difficult time being uncomfortable, no matter what the circumstances are, whether it's in having a conversation, whether it's in sitting with ourselves, whether it's challenging ourselves physically, emotionally or through exercise. And so for me, instead of starting to see this as something that I needed to avoid at all costs, I started trying to develop my ability to be more uncomfortable for more sustained for long periods of time. And part of that discomfort comes with allowing myself to, to mourn and to cry. So I think that developing the ability to be uncomfortable and accept that discomfort and the fact that there are things that are completely out of my control no matter what I do to try to create that control has been a huge lesson for me and developing the ability to just be with loss. You also you I mean, you're an extreme athlete, you are a group fitness instructor, you have accomplished all of these incredible athletic feats. Is that a part of sitting with discomfort too? I mean, I imagine climbing Mount Kilimanjaro is not the most comfortable thing in the world. Are your athletic feats, a part of that? Or is that separate? And like, where does the drive to do those incredible physical things come from? So, you know, I feel a really, really strong sense of urgency. And some people, I think, many of us who experience loss like this, do have this sense of urgency and I absolutely have this sense of urgency, I think it works both for and against me, it works for me, because I'm able to do so many things that I really don't make excuses. And I'm constantly finding ways to make things work. And on the other hand, it means that I'm constantly going doing being and, and not taking as much time as I probably should to just relax. But more importantly, the physical aspects of this. And one of the things you wrote about in the book is that I was in a big accident, you know, when I was 18. And so there are a lot of different ways in which physical activity has found a role and played a pivotal part of my life. One of the things is that, okay, so I can't control the fact that I'm going deaf and blind. But I can control how I take care of my body, I can control how strong I am, or how hard I push myself. And that, to me has made me feel so able, especially when it's easy to get lost, and all the things that maybe I can no longer do or that I'm losing the ability to do as independently as I once could before. So not only is the aspect of being able to physically strengthen my body when I can't necessarily control the fact that I'm losing my vision hearing, is that so important to me, but emotionally, I think that oftentimes we mistake we live in a diet culture, we live in a culture where people are constantly consumed with losing weight with finding the next fad diet. And instead of understanding that physical activity, that being physically active, the exercising is such a huge part of our emotional and mental well being to that without my ability to exercise, I would be far more anxious and stressed and maybe even depressed because there are so many benefits to being physically active on our serotonin levels and our dopamine levels. And so I really maintain my fitness and exercise, not only for physical reasons, but for the emotional benefits as well.

Alison Hall 22:52

How have you with COVID been able to maintain that physical exercise? Is it you know, working out in your living room? I imagine for somebody who's Go go go all the time, how has this quarantine period been for you generally, but especially from a physical aspect?

Rebecca Alexander 23:09

Yeah. So you know, my living room is, is now half living room have gym, I, you know, acquired three kettlebells and some free weights, you know, and really have a lot of equipment in my apartment, you know, something like this. I mean, it's interesting, so many people who have Usher Syndrome, when COVID started, it's sort of, you know, there was a little bit of this inside joke of like, Alright, now you know, what it feels like to be in a world where things are completely out of your control, and you're doing the best that you can given those circumstances. Now, it's by no means funny, but it does sort of, I think, give people a sense of what it's like to be in a position where you there's so much that's so so completely out of your control that you can't do anything about. So you have to focus on the things that you can do something about. So I do zoom classes, I definitely create workouts for myself. And the best thing about having the condition I have is that the best workouts for me are being in one place. Like I can't go for a run by myself, unless I'm tethered to somebody. And I wouldn't want to, I think do that anyway, but so I have definitely found ways to really be physically active and push myself hard in my apartment and create workouts for myself and I meditate every morning for five to 10 minutes, definitely would not call myself Zen because I make sure that I have my coffee beforehand, but it's definitely a way for me to try to create that mind body connection and really be present before the day gets started. And all of a sudden, you know, I'm talking to everybody about their emotions without having recognized my own first with COVID.

Alison Hall 24:49

I think that some people I mean wearing masks, there are so many things that people are uncomfortable with, and I saw something a couple of months ago and Then I read that New Yorker article about how COVID is affecting people who are deaf and blind or one or the other. And I mean, masks is the perfect representation of that our mouths and noses are covered, or our senses that we use for both of those things are hidden lip reading, I imagine is so much more difficult. And not to mention that people are scared of each other's scared to hold hands to touch each other to pass somebody on the street even I mean, especially in the earlier times, like people would cross to the other side of the street went outside. I mean, what is it like as a person with ushers to try to navigate the world, outside in this new reality that we're in currently,

Rebecca Alexander 25:51

you know, I think one of the biggest issues that people with Usher Syndrome or RP, face is the need to use a cane. You know, it's interesting, I think that there are some statistics statistic that shows that between the time a person is diagnosed and told that they should start using a cane to when they actually do is anywhere between about five and 15 years. That's a, that's a, that's a significant amount of time. And I think that there, I have found that so many people experience these feelings of shame, or not wanting to have to use a cane, because they're afraid of how people will treat them, they were fake, afraid that it will make them more vulnerable out on the street. And yet, now I feel like is a really important time for people to try to face that fear of using AR and use their cane, mostly because when you're not using your cane, and if you do have blind spots, or you have vision loss, it means that you are more susceptible to running into someone. And that person you run into has no idea that you have vision loss. So they think that you're just being careless, that you're being clumsy that you're being inconsiderate. And so that's one thing that I've really encouraged people to consider doing. And I tried to tell them, you're not alone. I'm doing this with you, even if I'm not with you, physically. But I think that I've encouraged people to create notes using an app called Big on their phone. And what I like about big is that you can choose the background color and the font color, and just have a few notes that you save on your phone, or maybe that you write and you keep with you, so that you can communicate to people if they're wearing masks, that I'm both visually impaired, or I have low vision. And I'm hard of hearing. So I'm sorry, if I ask you to repeat yourself or whatever it is, or can you point me in the direction of the produce section, you know, that there are ways that you have to be creative, and you have to be prepared. I think sometimes we go out in the street, and we're afraid of things that will happen. But we don't actually prepare ourselves for if they do happen. And I think that being prepared is a huge part of this, making sure that we are not in times where people aren't necessarily going to be sensitive to what your needs are because people are in sort of survival and self protection mode. So you know, they've created masks with the see through mouthparts that you can read lips, but of course that has presented the issue of fogging up the mask. So they're they're just a host of different issues that come up. And I think that we're all doing our best, but I think that we often our fear becomes greater because we are not setting ourselves up for I don't want to say success, but we're not setting ourselves up for having a more productive or less fearful experience out in the world. And so we do have to prepare ourselves with various ways of creating accessibility for ourselves.

Alison Hall 28:49

And Rebecca, I'm sorry, I keep saying deaf blind or have Asperger syndrome. Like, is there I think a lot of people honestly struggle with like, what is the correct terminology? What do what do you say about yourself? Like, what should I be saying?

Rebecca Alexander 29:04

You know, it's such a good question. And on the one hand, I you know, as a disability rights advocate, I really try to be sensitive to these things, but everybody has their own feelings about it. I know that some people who feel do not like being called hearing impaired, they believe that being called here hard of hearing is much more PC. I don't care for me, you can call me hearing impaired I honestly don't care what you call me and Carrie how you treat me so but you know, people identified differently in capital DB deafblind means that you were born culturally deaf and that you identify as deaf blind little DB sometimes is that you're somewhere you know that maybe you were raised hearing but you were hearing aids and you also have low vision. So you know, I think it's it's a case by case thing you have to ask people how they prefer to be identified, and I don't think most people like to identify themselves as different blind or low vision, you know, hearing impaired I think that people are more concerned with being able to get their needs met. But I know that there's so much sensitivity around having, you know, appropriate language and how you describe someone never use. You know, I mean, deaf and dumb obviously, we know all this stuff. But But I think that we, you know, having Usher's syndrome makes me keenly aware of the fact that I have no idea what people are walking around with the same way that someone might look at me on the street and have no idea that I'm going deaf and blind. And I think that that has been such an incredible lesson for me of just in not only self acceptance, but really in trying to see other people at face value and not assume that I know who they are, where they're from,

Alison Hall 30:47

you must have incredible empathy because of that, if you can always look at somebody and think they have something that I may not know of.

Rebecca Alexander 30:55

Yeah, I think my my empathy radar is a little too strong, I probably need to tone it down a bit, because I think that I really am incredibly compassionate and sensitive to people. And their differences. And their needs may be too much. So but yeah, you described yourself as fiercely independent. What was it like as you got used to this diagnosis? And what does it continue to be like, asking for help for you? You know, I think that first for all of us, whether we have a condition that's causing us to lose our vision and hearing or whether we're simply a person who's getting older or doesn't know, an area, they're walking around in very well, being able to ask people people for help, there's sort of a spectrum of comfort. And the way that I've developed that comfort for myself is that I know how I feel when people ask me for help, I know what a sense of reward I feel, and being able to help somebody else, I know that when I ask somebody for help, that I'm engendering in them this feeling that they're needed, and that they matter. And I believe more than anything, that there's nothing we want to know more in this world than that we matter that we're needed. And so even when I help someone, let's say cross the street, if it's an elderly person, and I help them get across the street safely, and they thank me, even that small exchange, that short time that we've been together, that is what it means to be human that is sort of human condition, the human condition of being here together. And so I really feel a sense of purpose and value, I think when I offer that to others, so I try to remind myself that I'm engendering that in other people when I ask them for help, as well, during COVID like in the last six months, are you able to ask people for help? And I mean, what does that look like? In one way COVID has heightened our sense of empathy, I think for people and the fact that we're in this together, but in another way, we're all really in a like every man for themselves protects yourself zone. You know, I think that it certainly has limited my movement, I'm not going as many places as I used to. I used to travel a lot for speaking engagements and not doing that. Now obviously, I'm doing if I'm doing speaking engagements are virtual, very lucky that my best friend in the city has a car. So on the weekends, we try to get out of the city or we try to go somewhere different. And so yeah, it has been very limiting. Because I really stuck to the area that I'm comfortable with where know the streets where know where the potholes are, where I know where the pavement is not, you know, very reliable, because I think sometimes when you go into areas that you don't know as well, it feels less settling, especially now, not knowing whether people are going to be willing to offer help. But I do know that when I go to areas that are less familiar for me, I make sure that I have my cane with me. And I know that people have different comfort levels. There are some people who understand that wearing a mask and being able to guide someone and maintaining your hygiene generally means that you're going to be okay and pretty safe. But there are some people who will be very afraid and not be willing to help and I think that that's not because of me that's their own stuff. And I have to sort of take that in stride. If I think if I took everybody's response to me as someone out in the world with a disability personally, it would be very difficult to get far in the world. Because people have an every time I interact with someone, sometimes I get rude comments, sometimes I get insensitive comments, I find that there's tremendous kindness in the world. And that that happens more often than the latter. But I do find that I have to try to brush it off and just say that's their stuff. Not mine. It's their problem, not mine. Because we all have our stuff, whatever it is, and in some ways, having a condition that causes me to go deaf and blind is far easier than the emotional and mental health issues that a person might be dealing with who is fully sighted and fully hearing?

Alison Hall 35:14

Do people ever just offer you help when they see your cane? And? I mean, is that okay? I honestly, I think that I would be nervous that I would be offending somebody. And I would be worried that I would be, you know, infringing on their independence, is that something that people should consider to offer somebody help just out of the blue?

Rebecca Alexander 35:36

I think that many that everybody's sort of different with this. I say, if you see someone who's using a cane, and they look like that they're they look like they're disoriented. They look like they they're lost, they look like they're having difficulty finding the crosswalk, by all means, offer them help. I think sometimes, you know, I've seen people watch someone with a cane struggle to make it across the street onto the crosswalk. And, you know, they're saying to those themselves, Oh, my gosh, just a little bit to the left or no, you're almost there. But they're not actually doing anything. And I say, imagine yourself in that position, if you can't see, and you're trying to find the corner so that you can go up the ramp and get safely onto the sidewalk? How might you want someone to handle the situation? Would you want people to watch and hope you make it? Or would you want someone to offer their arm and help guide you? And I think the answer is pretty simple. If you see someone who's walking confidently with a cane, chances are they don't need your help, and you can leave them alone. So I think that you do have to sort of assess the situation as you're there. I think that just like people who are fully sighted people who are blind or low vision can be jerks too. And so if you offer them help, and they give you a rude response, well, they're human, just like the rest of us, right. But I generally am appreciative when people offer to help because I know that it comes from a good place that they're not trying to belittle or infantilize that they really are trying to offer support and help because of their own empathy.

Alison Hall 37:06

In your book, you talk about trying to remember the simple things, both with your hearing sounds from when you were a child to beautiful memories and trying to implant those into your mind so that you can always refer back to them. Do you still do that? And are there certain moments or sounds in your life that you reflect on and that help you?

Rebecca Alexander 37:32

So you know, my favorite, most fondest memories come from my childhood, mostly from the camp that I went to. And interestingly, right now, the camp that I went to is right in the fire zone for these terrible wildfires in California. And it's heartbreaking to think that, that this camp could be burnt down skylight because somebody's camp, which is one of my most magical safest places, and I have such fond memories, not just of the senses of hearing the birds in the morning, I could hear Reveley in the morning, there were so many things that I heard so crisply, and even now I can conjure those thoughts and those memories and really hear them as though I just heard them, you know, yesterday, but it's also the smells, that I have a very strong sense of smell. And so even now is my vision hearing has declined. My sense of smell, my sense of touch has gotten much stronger. I am very much in tune with my dog and how she feels and how she smells. And, you know, living in New York City, having a very strong sense of smell is not always the best thing, particularly during the summer. I have a weird memory and ability to identify perfumes and colognes, which is kind of a cool party skill, but no real actual, you know, value in that. But I absolutely do remember things and crisply, and especially now when I struggle more to use my vision to be able to make out what it is that I'm looking at whether it's a picture or whether it's somebody coming to me from a distance. I really do. Think about those times where this was not even something I had to think twice about. And I'm so grateful to have had that experience that opportunity to just even not have to think once or twice about what I was seeing just to know that what I was seeing I could trust and to lose that trust in what you're seeing is definitely an experience.

Alison Hall 39:33

What led you to your career as a therapist.

Rebecca Alexander 39:36

I in my own process of coming to terms with my diagnosis or play therapy was very helpful. My parents went through a very serious divorce when I was separated when I was 10. And my diagnosis was soon after that. So there are a lot of things in my life that I think having someone to talk to really was helpful to me. Originally I wanted to work overseas and do something and a Francophone Countries like in Africa was always very interested in public health. And in Africa, it was always very fascinated with just developing countries and creating equity and, and the ability to have access to the types of things that we so readily had access to like clean water and education. And as this diagnosis came, I remember I was applying for the Peace Corps, when I got out of school out of college, and realized that there was a very good chance I was going to be put in a very, very remote area of Africa where there was not electricity, or even necessarily running water, and that if my hearing aids died or broke down, it wasn't like, I could just hop over to the audiologist and get my ears fixed, that this was something I was really going to have to take into consideration for the long term. And so much of my process, I think, dealt with having to go through therapy myself, but also being fascinated with the human condition, I've just always been very interested in emotions and how humans are so similar, despite how different we are in so many ways. So I think it was an easy natural progression for me, to go from wanting to do something much bigger overseas to doing something that I knew would be sustainable, and that I knew I would be able to maintain for a long period of time, no matter what happened with my vision and my hearing. I mean, even just with the changes of COVID not to always bring it back to that, but like everything relates to it right now. I mean, I imagine it's different for you now seeing all of your clients, either is it on the phone or in zoom sessions? And like, how has it affected your practice and your sessions? Yes. So, you know, sadly, my practice is as busy as it's ever been, given the circumstances, right, everybody's sort of struggling in their own ways, and for different reasons, because of COVID. And then some. So I am doing virtual sessions, I'm not yet seeing anyone in person. And so we use zoom, we use soft dock, you know, use phone for patients of mine who are blind and don't need to use FaceTime. Some, some people prefer phone anyway, I would say that, you know, the the biggest challenge has really been just managing technology, because technology always presents itself with issues. So I've, you know, slapped on an extra 10 minutes for each session just to prepare for unexpected technical difficulties. It's, you know,I would say that some of the work I've done with people since COVID, started virtually has been even more meaningful than maybe we did in person. And so I don't know, I certainly missing people in person, there's nothing like being able to work with people in person. But I've definitely been able to make it work to make do and early on, I was working as a first responder for medical providers on the front lines, because FOMO office announced that they needed more people to be able to offer their services. And that was definitely a real challenge. And really incredible to work in such you know, crisis with people who are really providing the, you know, first responders providing medical care at the beginning of this pandemic. And since then things have become more manageable just in terms of managing my own stress levels by association.

Alison Hall 43:34

I just had something highlighted from your book, you had said your fingertips are your eyes, when you are losing your sight right now we are using our fingertips so limited and we are slapping on hand sanitizer and washing our hands. So much. We're so worried about surfaces and touching things and possibly exchanging, you know, germs with people, but also to be using your hands to touch things. Your sense of touch is so important when you're losing your vision. I mean, what has that been like for both you and any of your clients or friends who maybe have less eyesight than you?

Rebecca Alexander 44:11

So I think that, you know, there's been tremendous isolation for everyone right now. And particularly for people who do have who are blind or who live with low vision, you do rely so much more heavily on your other senses. And so I think many of us are staying home more so than we would i as i guess all of us are and relying on you know, I use my fingertips for everything. I mean, I don't even go and get you know, even going and get your eyebrows, you know waxed or threaded. I now can't really see the my eyebrows I touch for them. And that's how I plucked my eyebrows. You know, I mean little things like that. But I would say that usually, you know when I go out in public, I'm just very vigilant about making sure that I wash my hands and making sure that I then put lotion on them because I am more prone to using my hands to gather information. I do know that I have to be even more vigilant and diligent about washing my hands and keeping my surfaces clean than maybe somebody else who doesn't think about that as much. So but you know, my, my access to the outside world right now is much more limited than it once was. But I'm certainly washing hands, I have those medical, alcohol swabs that I carry with me everywhere for everything, like so many people. But I also know that I don't live in fear as much as I just learned sort of live in, in being cautious and in trying to be prepared.

Alison Hall 45:46

It seems like you just have such a healthy and positive outlook. People I know call you and inspiration. I mean, what do you say when people say that sort of thing to you? You must get it all the time.

Rebecca Alexander 45:59

Yeah, you know, it's funny, because friends of mine, who one of my very dear friends have and Girma. She's the first upline woman to graduate Harvard Law School, and is just a really strong disability rights advocate and such an incredible woman. And we've talked many times about how we feel when people call us an inspiration. I always know that it comes from a place of a good that people genuinely say that because they're trying to pay you a compliment. And interestingly, an analyst that I worked with some years ago, told me that when you call someone an inspiration, it's like saying better you than me. And I had to process that and make sense of it. And I don't disagree with it. I think that there is truth to it. But I also think that I try to take it in stride. Because when someone calls me and inspiration part of me feels like well, what choice do I have, these are the cards that I was dealt, I can't imagine living my life sitting around, and just mulling over the fact that I'm losing my vision hearing. But I also feel like if people call me an inspiration, and they go, and they do more with their lives, and it encourages them to live more meaningful lives that isn't sort of caught up in all of the BS and nonsense that we are easily prone to getting caught up with. And by all means, I'm happy to be your inspiration.

Alison Hall 47:22

It seems also like you have really strong friendships and relationships from from reading your book and following you on Instagram. Can you just talk about that how those friendships and relationships have impacted your life and helped you?

Rebecca Alexander 47:36

Yeah, I you know, I've really fostered so much of these relationships with friends, by being open about myself. And you know, humor is a huge part of my life. You know, it's hard to talk about going deaf and blind and see the humor in it. And yet, there's so much that's hysterically funny, I think that so many people in the disability community, you know, the sort of joke sometimes is on the able bodied community, because they oftentimes, you know, when we talk about ableism, it's basically looking at people with disabilities and seeing them as lesser than or less capable of, or not as intelligent or that they somehow should be pitied or you feel badly for them or poor thing. And yet, so many of us our biggest issue is the able bodied community, sort of looking at us this way, as opposed to understanding that the only difference is that we can accomplish the things that a fully able bodied people accomplish when we had that access, when we have access created for us, and that, you know, some of the funniest people I know, are people with disabilities, because you can't live with something like this, that in many ways could be seen and experiences terribly tragic. And yet, see tremendous humor in it. You know, for me, for instance, when I was giving an award a couple years ago, and I was backstage, and it was totally dark. And so somebody had to lead me on to the stage. And as I was waiting there, I felt that there was somebody next to me. And so I just it was very noisy, and I leaned over and I just made some small talk or comments. And as someone came to get me to guide me onto the stage, I just put my hand on this person to say it's nice talking to you, and realize that I was talking to a statue for, you know, an mentals. Now,I could be overwhelmed with embarrassment. And yet I was like, That's hilarious. I was just talking to a statue that I thought was talking about when I just couldn't hear but who knows, you know, and that's hilarious. So a riveting conversation with a statue before you know. So I mean, there's just so many things that happen that, that you have to really have a sense of humor about and I think that so many of us do. And part of this, you know, creating accessibility and inclusion. It's not just about seeing people with disabilities as human, but it's also seeing them as just as capable of having You know, dark snide snarky humor as anybody else, and being treated as someone who has just as many goals and hopes for themselves as an able bodied person, as opposed to somebody that you should pity or that needs help in order to live their lives. So, yeah, I'm very fortunate to have friends who are able to really support me and who have a sense of humor with me. And I think that part of my developing this sense of comfort with myself, and with what's happening to me, and my ability to communicate to others, what I need and who I am, has made them so much more comfortable. And being my friend, I think when we see someone who's uncomfortable with themselves, no matter what the situation is, we feel uncomfortable, because we don't know how to make them feel more comfortable or how to support them. So I think that my developing this comfort with myself has really allowed other people to feel comfortable with me to despite the fact that I have vision and hearing loss.

Alison Hall 51:00

Rebecca, thank you so much. This was so interesting. I loved your book, I love speaking with you today. I just I really appreciate you taking the time, is there anything else that you wanted to just touch on or want people listening to possibly know?

Rebecca Alexander 51:17

You know, I just want people to know that whatever you're going through, and you're living with, you're not alone. We're living in a tremendously isolating time, right, right now. And I think that, you know, there's that whole sort of separate but together whatever these hashtags are, that they have, and I think that the that there's so much strength in the human spirit and the human condition, that's exciting. They're making my book into a movie Netflix just about the rights to it, which is kind of weird. But so hopefully my hope for that is that that we will continue to raise awareness for Usher syndrome and that disability will become more normalized and seen less as something to be afraid of or not know how to navigate. So yeah, and I would love for people to share their thoughts with me on Instagram or Facebook. I can't thank you enough a for taking the time to read my book and be just taking the time to have this conversation.

Alison Hall 52:15

Thank you for listening.