[Intro music]
Megan: Welcome to The Power of Gratitude and Joy, a conversation with Rebecca Alexander, one of AFB's centennial conversations.
2021 is the American Foundation for the Blind's 100-year anniversary and throughout this year we've hosted a series of conversations, virtual events, and discussions to celebrate this milestone, as well as to highlight the issues that continue to be faced by individuals who are blind, who have disabilities, and who are from underrepresented populations.
My name is Megan Aragon, I'm the Chief Program Officer with American Foundation for the Blind, and it is my pleasure today to have an opportunity to speak with Rebecca Alexander. I'm a white woman in my mid-30s and have long blond hair. I'm wearing a gray dress with a black knitted sweater. Behind me is a folding screen in the Japanese style with cherry blossoms, and I'm in my home office.
Before we kick off this conversation—which is so important right now during this season of life, to talk about gratitude and how we can develop and cultivate a sense of gratitude amidst a global pandemic, our lives being turned upside down, social unrest, and a general sense of the unknown of what the future holds for us—before we do that, I do have a few housekeeping notes to share with you.
American Sign Language interpretation is being provided, as well as live captions. A link to the live captioning transcript will be available in the chat. We will have an opportunity to have questions answered from the audience, so if a question occurs to you, please feel free to add it into the chat, and at the end, towards the end of the conversation, we'll -- Jeremy from American Foundation for the Blind will be moderating those questions and giving them to Rebecca.
To access the chat, use the keyboard command alt-H or cmd-shift-H. It's my pleasure and a great opportunity to be able to speak today with Rebecca Alexander. She is an award-winning author, psychotherapist, extreme athlete, keynote speaker, disability rights advocate, and truly an inspiration. She has two master's degrees in social work and public health and has accomplished incredible, tremendous athletic feats which I hope she will share with us. Rebecca, would you please tell us a little bit about your story and your background?
Rebecca: Ta-da! Don't you love the mute button when you're visually impaired trying to find the unmute button? So hi, everyone, I'm Rebecca Alexander. I'm so glad that we could be together today. Thank you to the AFB for having me. I am a white woman with dark brown hair, I am wearing a bright red sleeveless top and earrings for the first time in I can't tell you how long. They have a little bit of a pattern and somewhat of a crescent shape. Behind me on my left shoulder are some fake flowers that I found and put together to make it look more decent in this apartment and over my right shoulder is a dark blue chair. I should mention that there's a strong likelihood that there's some guacamole on my shirt.
I have Usher Syndrome Type III A. It is the leading genetic cause of deafblindness in the US and around the world. We think that approximately 400,000 people are affected with Usher Syndrome, but to date we have what we believe to have only about 1% of the population identified. So there's still a lot of work for us to do in terms of getting proper identification for people with Usher Syndrome.
Usher Syndrome is characterized by both hearing loss and vision loss, so the presentation of the vision loss comes in the form of retinitis pigmentosa or RP, which I believe many of you on this call may have or be familiar with but if you're not, retinitis pigmentosa is a degenerative condition that affects the rods and cones for many of us we experience tunnel vision and are most seriously affected at night, because there's not light, so we aren't able to see as well, and it manifests itself in many different ways for so many of us. I am part of the rarer population of people who have what's known as donut vision. So I have my outermost vision in the periphery of my vision and I have my central vision. And I have cochlear implants on both sides. The type of Usher Syndrome I have was not yet identified when I had been diagnosed. They had told me that I had Usher Syndrome at the age of 19, when I was at the University of Michigan. I had experienced really loud ringing in my ears and when the otolaryngologist tested me it was my own family's blood work and researchers from various parts of the world, specifically Helsinki, Finland, who were finally able to identify this third type of Usher Syndrome which is Type III A that I have.
Megan: Wonderful, welcome, Rebecca, thank you so much for joining us today. It really is an honor and a phenomenal opportunity to talk about some of the key issues around mental health and how we can build that help to support good mental health, especially in wildly unpredictable and uncontrollable situations as we have been in over the past year.
I'd like to first start off this conversation by talking about resilience, and how we [build] resilience, but to be sure that we're talking about the same thing, could you talk a little bit about what resilience is, and what does that look like when a person is quote-unquote resilient, as a first question, and then what behaviors do you incorporate into your life to build resilience and a resilient attitude?
Rebecca: Sure, so it's interesting, because we talk about resilience. We talk about all these catch terms, resilience, we hear about mindfulness, we talk about joy, all of these things that mean something different for so many of us. Resilience…there are many things that we can actively work towards and we can certainly actively work towards becoming more resilient. But in general, resilience is not something we actively work towards. It is something that we build based on adversity in our lives and how we can tolerate discomfort in our lives, to understand that sort of suffering is inevitable, as the -- as a part of the human condition, and that is very much a part of how resilience is developed.
So, I can certainly tell you ways in which I have developed resilience in my own life. I think that any time we are faced with a situation, an experience, that is out of our control, that we have an overwhelming sense or need to want to control, and we grapple with that, we wrestle with it, we struggle with it, that is a part of developing resilience. So, I think sometimes we're looking for, you know, some direction or some instructions on how to develop resilience, and resilience comes with having grit and having the ability to tolerate what oftentimes we have thought to be unthinkable experiences in our lives, that we have managed to not only be able to work through, but live with. One of the other things I wanted to mention is that we hear a lot about people talking about overcoming obstacles, and overcoming adversity, and while I appreciate how, I think, positive that sounds, I don't think it's necessarily realistic in terms of maintaining or being able to develop resilience and then gratitude and joy.
I think that we really need to work much harder on developing the ability to live with adversity, to live with obstacles. For so many of us who are experiencing…and we all are experiencing loss in our lives in some form, that is a part of being human, right? But for so many of us, it's not the overcoming of it, it's the living with it that is most difficult for us to tolerate.
Megan: Right, I can see that. I'd like to touch on one thing that you just said about control. So, would you say that resilience is almost the ability to recognize what you can control and what you cannot control, and to be…to develop an ability to be OK with the fact that you cannot control everything? Is that some aspect of resilience?
Rebecca: Sure. I mean, here's what I'll tell you. I can't control the fact that I'm going blind. But I can tell you that I'm not OK with it.
Megan: Mm-hm.
Rebecca: And I think that we oftentimes feel in terms of being able to be grateful or have gratitude or joy, that we have to say that I accept this and I am OK with it. I'm not OK with it. I don't accept it, but I live with it, and in living with it, and allowing myself to experience all of the emotions that come with having a condition that causes progressive loss, I am able to really be fully present to not just the difficult emotions that come, but the tremendous sort of gratitude and joy and feelings that come with giving myself that opportunity, that permission. I will say that resilience is something, again, we don't necessarily go out of our way, like, "I'm going to go out today and build myself some resilience,” right? Resilience is something that we develop when we face things that we never anticipated. But I can tell you that because I can't control the fact that I have a condition that's causing me to go blind or that caused me to go deaf—without the use of my cochlear implants I am completely deaf and I've told everyone who will listen before that nobody sleeps better than I do in this city, in New York, that's just I feel like a fact at this point. But I do know that in order to better develop that tolerance and manage my expectations and maintain my resilience, I do things that make me feel empowered. I do things that help me work through my anxiety or live with anxiety and not let it get the better of me. And so, some of those things include exercise. Oftentimes we hear people talk about exercise as though it's something, well, “I want to get in shape,” you know, “I've gained weight over COVID and I really need to get my beach body back,” or whatever it is they say. I exercise first and foremost for my mental health. For my emotional health and wellbeing. Because I have found that the best way for me to address the feelings of uncertainty and anxiety and fear and everything that comes with being human, is by being able to exert it in some way, to develop physical strength, and therefore, emotional strength, as well.
Megan:Well, that's wonderful. Thank you for sharing that tactic, and do you think there's a connection between the physical body and that exertion, and the emotional state that one is in, and that just by doing something physical, you can change your emotional state and your mental state?
Rebecca: Well, I think that's a good question. I think that again for everybody based on our different abilities it's different, right? I know that there are a lot of physical things that I can't do for various reasons, one of which is having been in a very serious accident when I was 18, so I can't run. There are various, you know, types of…I would never run on my own even if I could. I would need to have an escort runner with me. But I don't think you necessarily have to push yourself and sweat 'til, you know, you can't breathe to be able to challenge and improve your emotional and mental state, but I do think that being able to develop discomfort—or the comfort with discomfort, whether in being physically active—whether it means in sitting still and being able to tolerate that by meditating. When I had—I had cataract surgery in my left eye two weeks ago, that was a huge blow to my system, mostly because I feel like my expectations were not managed well beforehand so I didn't realize that it was going to make me feel very off, and I also couldn't exercise. So, part of how I navigated and managed that is: Here is another form of discomfort that I oftentimes avoid, and that is of having to sit still.
And so having to sit still and meditate and know that that is all I can do to take care of my emotional health and wellbeing, was a new practice for me. It's something I used to do five to ten minutes of, but to actually sit there and for 30 to 45 minutes, meditate as opposed to do physical exercise, was really important for me to be able to practice.
Megan: Great. Thank you. One of the other questions I wanted to touch on, something that you said earlier, about feeling the gamut of emotions and that human experience, and something in our culture is really driving us to be happy, and that happiness is the goal, and I wonder if you could talk about the pursuit of happiness and whether that's a realistic goal for us to constantly be striving towards?
Rebecca: Mm-hm. So, we talked a little bit about this in preparation for today's talk, and you know, one of the things that was asked of me was, like, well, how do people—people are always looking to find ways to be more happy and what do you say to that? How do you suggest people seek happiness? And what I oftentimes ask of my patients in my own private practice is, we live in a country, specifically in the US, but also in the world, we live in sort of this consumer culture, where the idea is, the premise is, life, liberty, and the pursuit of happiness, right? But the only reason why we know happiness, really is because we know what it feels to not be happy. Happiness is something that we oftentimes—when we experience—it feels so good, but we also are afraid to feel it sometimes because we know it may be fleeting. We know what it feels like to not be happy. I have plenty of people who…for instance, someone who I work with who's really struggled with her weight for a long time and she said to me, “You know, I can lose weight and really focus and go on a diet and be able to drop weight that I need to. It's difficult, but I can certainly do it. And I can gain weight very easily. That to me comes naturally. But maintaining my weight is something that is impossible.” And that is a metaphor here for what I believe is satisfaction. How often in your life can you say that you have felt satisfied? Because we are constantly looking to feel happy, and we're looking for whatever it is that will give us that sense of euphoria or happiness, whether it's love, whether it’s…you name it, there are any number of ways in which we pursue it, but what would happen if you were to pursue satisfaction? Sounds pretty boring, doesn't it? And yet it is one of the key ways for us to be able to maintain a strong sense of mental stability and emotional wellbeing. So, I really encourage people to seek feeling that sense of satisfaction, and what does satisfaction mean to you?
Megan: Right, right. It's not very glamorous, right? And dramatic. And the extremes and highs and lows in the emotional spectrum are very dramatic. And especially that mountaintop experience.
Rebecca: Mm-hm.
Megan: All right, thank you. AFB just recently released a report, a research study that looked at the experience of blind and low-vision children and their—in the education during this time of the pandemic, and what we heard from parents and teachers is an increased level of stress and anxiety for having to play multiple roles and shift into new ways of delivering education, and especially for parents, playing multiple roles while navigating quarantine and continuing to have to maintain their full-time jobs, as well as help with their children, and then an added layer of access, difficulty to access the materials because of accessibility. What is the advice that you give to your patients, as well as tell yourself, tactics that you use yourself, when dealing with stress that is related to—and this ties into the question that we were talking about earlier around control—stressors that are in part compounded by systemic issues, things that are coming from either—like in this example, a lack of funding, a lack of preparation, the lack of accessibility that's built into systems. What do you tell your patients? What do you do for yourself to navigate those kinds of situations?
Rebecca: Well, one of the most important things, I think, for us to have—and this is a pretty loaded question, because to apply to children in school and to apply to adults is—it's sort of definitely a vast audience and I apologize, I have this putty that I use that is part of what I do to keep myself from biting or picking my nails, so it's another thing that I encourage people to use. I can tell you about that later. But if you see it for those of you who are low vision or not sighted, I have this light pink form of what looks like—it's putty that I oftentimes squeeze in my hand as I'm talking so that I don’t bite my nails instead....
Megan: Is it Thinking Putty?
Rebecca: Yeah, it's not Silly Putty. But it does have… it's actually aromatherapy putty and I have them in all different scents, and this one happens to be rose petal, but I have mint and eucalyptus and lavender. That's another conversation. But to address your question, here's what's interesting. So yes, we are—so the most important thing is that we can learn, I think, as individuals, no matter what our circumstances are, is self-advocacy, right? So, at the beginning of this pandemic, everything turned virtual and everybody was so freaked out and “Oh, my gosh, I don't have any control over this,” and so many of us with low vision or who are blind or who have hearing loss or who are Deaf are like, welcome to our world, right?
Megan:Mm-hm.
Rebecca: Welcome to having to figure out how to make it work. And now, how do we have to find ways of making it work in this new arena, in this new space that we now operate, live, and work in, where there is not accessibility. So, there were a lot of major efforts made, and a lot of progress has been made, and we have a lot further to go. But it is that self-advocacy, I think, that was able to help propel us forward in creating greater access to so many of us who live with disabilities. I will also say that living with either blindness, vision loss, any type of disability, means that you have to be tremendously creative. It means that the world, and the way that things are either built or the way that they're thought of or oftentimes the way that they're presented, are not presented in a way that includes us, are not presented in a way that gives thought to what it might be like, or how someone without sight, without hearing, without certain abilities, may be able to access this information. And so, for that reason, I encourage people to really let their creativity go wild. Use your creativity. Don't try to mold yourself into a system that is not built for you. And if you have to find alternative ways of making it work, then do that first and foremost, and then we can sort of advocate for what we need. For so many of us, we're actually figuring this out. This is why it's so important to have a sense of community, right? Because for so many of us who live with similar conditions, we are all doing everything in our power to navigate and make things work, and to be able to share that with each other, you know, when at first for people with hearing loss, when we were wearing masks. You know, people are saying, “Oh, I can't hear anybody with masks, masks are so uncomfortable, I can't breathe.” What if you can't communicate with someone? What if you can't hear or understand? What if you're deafblind and you are in a position where you are told not only can you not touch someone, you have to stay 6 feet apart from them and your only mechanism for communication is through touch, right? So I think these are the types of things that really force us to have to be creative and think differently. But I mention this because there are so many people in the hearing loss community that were trying to figure out ways, when they were making these clear masks, then our issue became the foggy mask – that a mask would fog up too much. And then there was too much chemical coating you need to put on that you were inhaling in order to not have it fog. So, we had the shields and so, there were all these creative ways where people were coming up and supporting each other and developing to be able to create greater access. So, what I can say is that it is definitely a system that has a lot of improvement that needs to be made, but I also think that that improvement and the creativity and being that sort of pioneer of this has to start with us, and in some ways that's unfortunate, but in some ways it means that we are in a better position to meet our own needs in a way that maybe other people have not been able to.
Megan: Hm. That's very interesting on the self-advocacy perspective. I wonder if you could talk about if you have patients that come to you and they are struggling with that sense of self-doubt, imposter syndrome that…maybe I can't do this goal that I have achieved or this dream that I have, because of some inherent quality, and maybe it has to do with disability, and the stories that we tell ourselves. And how the tension between needing to advocate for yourself and that self-doubt that can keep us from achieving.
Rebecca: Sure, so I think we all live with imposter syndrome in some way and what is imposter syndrome? Imposter syndrome is the fear that someone will find us out. That we are faking it, that we have no idea what we're talking about, that we don't belong.
And so I think it is important to understand what it is that we're actually feeling, because imposter syndrome, I think we know generally what it is, but what's really underlying that? What's behind it? And it usually is something that comes from a belief system. There are many things that I am not certain whether I will be able to do, but I can tell you that I will try very hard to do it to the best of my ability. And so, when we think imposter syndrome, when we think that people will sort of find us out, we think that we absolutely have to do it perfectly, be on our A game no matter what, so there will never be a possibility or chance that someone will think that we are failing or that we are incapable. And none of us are perfect on any given day and all of us are susceptible to not handling things to the best of our ability. But we do have the ability to challenge fears and we do have the ability to understand that anxiety, which is usually what is also rooted in imposter syndrome, thrives off of anxiety.
So, when you're anxious about something, and when you have that sense of imposter syndrome, if you want to call it that, it means that your anxiety is going to continue to propel you or try to push you further away from challenging that fear.
It's sort of like -- anxiety is a bit contagious, and it's contagious, even with ourselves, and we can make it sort of worse. And the only way for us to try to lessen that anxiety, is to face exactly the fear that it is we're trying to run from.
Now, today, maybe one of my biggest fears is that -- and I think that you all can sort of gather at this point that I'm comfortable with my own vision loss and my circumstances, but for some people, living alone and having vision loss and putting on a shirt, their fear may be that they have stains all over their shirt. I'm telling you right away, there could very likely be a stain on my shirt. I'm sort of taking that control back, rather than you saying, “Oh, my gosh, there's a woman with vision loss and she’s got a stain right in the middle of her shirt.” I'm saying there's a good chance I have it and guess what: I'm human, right? But that by no means undercuts my intelligence or my ability to have this conversation, right? So, we also think that we can’t show who we really are. And we have to present ourselves in some way that suggests that we've got it all together.
Nobody has it all together. That's a whole part of being human, too, right? We're all trying to figure it out. So, when I feel that sense of uncertainty, I may embrace that and I may incorporate it into whatever it is that I'm doing or presenting or talking about. When I have a patient who’s dealing with something that's maybe unusual for me, is something that I haven't had to address before, rather than pretend to be an expert on this subject, I'll say, “You know what? Why don't we talk through this together? Let's think about why this might be.”
Because I think that for so many of us, it's not that we need to be experts, it's that we have to have the ability to be open, to be willing to listen, and to consider, you know, what's really kind of going on underneath all of the stories that we tell ourselves.
Megan: Mm-hm. Yeah. It's that being authentic and acknowledging the fear or the anxiety that you're feeling. That's wonderful. Thank you for sharing that. So, earlier you talked a little bit about physical fitness and how you use that as a tactic to maintain your emotional wellbeing. Can you talk a little bit about whether there's a connection with physical fitness and joy? You've had some really tremendous accomplishments physically, and I wonder if those are like those mountaintop experiences, quite literally.
Rebecca: Mm-hm. So, we all have things that bring…here's what we know at the most basic fundamental level. We know that when we are physically active, in whatever way and to whatever extent we can be physically active, that it is scientifically good for our brains, right? That we are able to activate those neurotransmitters, like our endorphins and serotonin and dopamine. Those are all very important neurotransmitters that we have that help improve our mood, our focus, our sense of feeling satisfied, and our ability to handle stress and anxiety. So, you know, one of the things that I mention a lot about in my book is an accident that I was in when I was 18, and I know that I mentioned it a little bit earlier, but I think that people say, “Oh, here's a woman who's going deaf and blind.” My actual first experience with disability was sustaining pretty severe injuries from this accident, falling out of a window, and I broke just about everything in my body. I didn't hit my head and I didn't break my left—or sorry, my right leg or my right foot. So, I literally had to learn—I was in a wheelchair for about three and a half or four months. I literally had to learn to do everything to navigate out of the hospital. They would not discharge me until I could do everything with only the use of my right leg, and that in itself was sort of a physical challenge, right? I had to have both the mental and physical capacity to develop that, and over time, what I found is that I had to rebuild my body. So, many parts of my body, my left hand, my left foot, were reconstructed from hip bone. So, there was a lot that I face in terms of understanding how important our physical body is, how important connecting our mind with our physical body is. How many of us live with chronic pain? I don't think there's probably a person on this webinar today that has not experienced some form of chronic pain or is in pain somewhere today in their bodies, right?
And so, part of that is being able to not only take care of our bodies and the parts of our body that can support the areas that may not be as strong or may be weaker, but for me, that was really where my interest and my experience in physical fitness came into full swing, that I realized just how empowered I felt.
So, I had this accident, and soon after, I was then further diagnosed with Usher Syndrome. We knew I was diagnosed at 12 with RP. And this was something I had no control over. We didn't know when or if I would go fully deaf and blind. In fact, I was told that I would be blind probably about 12 years ago and so, to be 42 years old and for people say, “Oh, I'm so sorry. You have 10 to 12 degrees of vision.” I'm thinking, “I have 10 to 12 degrees of vision!” Do you know how incredible that is, to be able to still have even the small bit that I have, when I was told that I likely would not have that at this age? So, there's a lot of perspective involved, right? But…so, the physical aspects of what I do are so multifaceted. It's a part of taking care of the amount of pain that I live with, it's a part of taking the control back, because I don’t have control over other aspects of my body. It’s a part of strengthening my body because I'm more prone to accidents just by nature of having much more limited sight and hearing. It's something I do for my mental and emotional health and wellbeing, and it's also a part that connects me to others. It's something that I can share with others in challenging ourselves and doing these things together, because I can't do any of these extreme athlete adventures or races that I do by myself. And so, to be able to share that with someone is really such an incredible experience.
Megan: Mm-hm. Yeah. I wonder if you could talk a little bit about community and the connecting with others and how sharing experiences like that and not necessarily physical experiences, but that—because you talked earlier about community, too. The—how is community a part of developing and ensuring that stable -- stability and mental health and mental wellbeing?
Rebecca: Sure. So, we by nature are social beings. I mean I think for so many of us or for so many people who are introverts, COVID in some ways felt to a certain extent, as sort of strange and maybe insensitive as this sounds, as somewhat of a blessing, right? Of not having to be around people so much, to be able to turn your screen on and turn it off and not having, at least in New York City, to be having to take the subway and be constantly surrounded by people. But community and socializing is a huge part of being able to know that you are not alone. And so finding the community that has people who live with similar things that you live with, who enjoy similar things that you enjoy, gives you the opportunity to not only feel like you're less alone, but to see and find out what you're capable of and to know that there are other people who will want to do these things with you. It’s having community as a place to go when you need someone to commiserate with, when you need someone to ask questions about something that they may have experienced and you have not yet experienced, for instance in the case of Usher Syndrome, someone who had cataracts surgery before I did. I was very grateful to have friends who had gone through it so that I could reach out to them and ask them about what their experience was like, and it's been so wonderful to be able to have people, who have met me, who have just been diagnosed with Usher Syndrome and feel this sense of impending doom, and realize that getting a diagnosis of Usher Syndrome is incredibly overwhelming, but it’s not ending your life. It is something that we will all have to develop our ability to come to terms with. So, I think that community is huge. I think that the opposite of -- I don't want to say the opposite of gratitude and joy, but one of the things that we don't have when we don't have gratitude and joy, is we don't have a sense of perspective, and when we isolate and we don't have a sense of community, we are much more prone to falling into depression, we are much more prone to having anxiety develop and manifest into ways that are much more damaging to us, whether it's because we become addicted to painkillers, whether it's because we end up drinking too much, eating too much, we become obsessed with, you know, being on the Internet. Social media, we will go down the rabbit hole of stalking who knows what on social media. We disconnect from ourselves, from that discomfort, and being able to have community allows us to really be connected. Depression thrives off of isolation. And so the more you isolate, and the less likely you are to seek out a community, the more likely you are to find yourself in this state of depression and stuckness. And not being able to push through the very things that you are most afraid of.
Megan: Mm-hm. I wonder if you have any advice for our audience during this time of isolation, if you have any advice on how to develop community when we can't physically be together. And we are slowly returning to a somewhat “normal,” back to where we were slowly, but we still, you know, the timeline around that is very uncertain, so I wonder if you have any advice on how to develop a community in a virtual environment.
Rebecca: Mm-hm. So, I think that there is a few things that happen. Oftentimes we have a very deep-seated, very strong narrative with ourselves. We often expect people to be mind-readers. We often sort of blame other people for this friend not reaching out, this friend not inviting us. We feel like it's other people's responsibility to know what we need and what we want and how to help us get out of our shells, and we don't hold ourselves accountable. And I think sometimes when we have a disability…and I'm not just talking about a physical disability. Your disability may be your social anxiety. Your disability may be that you are incredibly judgmental of other people and you can’t see past that. Your disability may be that you're a victim, and you don't ever hold yourself accountable for what you can do to take control of your life, or what your contribution has been to the narrative or the difficulty that you're facing in your life. And accountability, I think, is a huge part of how we take steps to move forward, to move outside of that sense of isolation.
Now, I think that for so many of us, I can say for me personally, before COVID, I was traveling like crazy and I was doing a lot of speaking engagements and I was constantly on planes and going to different places and then everything stopped, and I'm in New York City, so there are parts of the country where I know there's sort of like this running joke of like, “COVID what?” Because people aren't wearing masks. Well, that is not New York City. In fact, I live on a street that two blocks down, there was a makeshift morgue that took up the entire block and it was something that you can't un-experience. And for someone like me to live in that and then to be at home for as long as I was, and to have the vision loss that I have, it affected me. Just like anybody else. We were all affected in different ways.
And it made me question my ability to go out and do what I used to do. I don't know that I lost any more vision over the last year, but I can tell you that I was isolated and I was not challenging those limiting beliefs that I had like I was before COVID. And so, when I had this cataract surgery and started to feel this change and like, oh, my gosh, I really feel less able than I did before, because I'm in transition before getting my other eye done, I really felt scared. And I had a conversation with my best friend about it, and he said to me, “I really think that even you, as a therapist, have to challenge that. That I think that you are afraid now because you have been home for as long as you have. And that the best thing you can do is to challenge that fear, that you will not be able to maintain your independence like you did before.” And this is to show you that it happens to all of us. We all experience it. So, what I encourage you to do is…we all have our own comfort levels, and we all have our own needs. Some of us very much need to have someone…in New York, we call it an SSP, which is a service support provider or social support provider. Someone who may go with you to a doctor's appointment to help you navigate, um, certain, you know, whether it's a grocery store. So, being able to create that foundation of people who you rely on or who you know can be there to help support you. Not do things for you, but do things with you, I think is really, really important. So I really encourage people to be proactive in their own lives, instead of expecting people to know what they should do, to be able to support them.
Jeremy: Thank you, Rebecca. I'm going to jump in here. This is Jeremy, Megan and Rebecca. We have, we are at the 2:45 mark. So if we want to take, uh, have you take one more question, Megan, or if we want to open up the open up the floor to our attendees and for attendees, just a quick reminder: Keyboard command to get in to the chat interface is alt plus H if you're on a PC and command shift H if you are on a Mac.
Megan: Thank you, Jeremy. Let's go ahead and have some questions from the audience. Thank you so much, Rebecca.
Jeremy: All right, first question we have here. Uh, Rebecca, you did answer this is, “Did you write any books?” Yes, you did. But the question is what books have you written and where can we find those books?
Rebecca: Of course. Well, I wrote a book, actually called it's a memoir called Not Fade Away: A Memoir of Senses Lost and Found, and you can find it on Amazon. It's on my website also; the link to it, rebalexander.com. I don't know if you guys can put that in the chat. Uh, but so I wrote it, and it came out, I want to say in 2014, the hardcover. The softcover in 2015. And it's actually in the process of being made into a motion picture by Netflix right now. So that's been an, a whole other experience. But so far that's the only book that I've written because I can't seem to slow down doing everything else and write another book.
Jeremy: Great, thank you, Rebecca. Kind of along those lines of, of your project with all your impressive accomplishments, uh, what's next for Rebecca Alexander, what sort of projects either real or imagined would you like to tackle in the future?
Rebecca: Oh, real or imagined? My imagination is very vivid, so I appreciate that, that question. You know, it's interesting, I think we're all figuring that out now, right? Coming out of COVID, of what we want to do next. I can tell you that I would like to be able to do more in terms of accessibility and fitness. And I just gave a big presentation last week to Peloton, which was a major platform for, you know, online fitness. Obviously they did very, very well during COVID because everybody was working out from home. But part of my message to them, and in starting to work with them, is that people with disabilities are actually the pioneers of home workouts, right? Because gyms historically have not been accessible for people with disabilities, whether it's vision loss, hearing loss, or any type of physical needs that you've had, you've had to create that space and that safety in your own home. So that for me is, is a big priority, is being able to create greater sense of access. Having a disability does not mean that you don't care about taking care of your body. In fact, you oftentimes care more about the things that impacted you, so that that's a, a big project that I'm working on right now, is creating greater accessibility in fitness.
Jeremy: Excellent. Thank you, Rebecca. Uh, Greg wants to know, can you elaborate on the extreme sports that you've participated in?
Rebecca: Sure. So, you know, I had a whole PowerPoint thing and we decided to do a discussion instead. So I'm sorry that I don't have those photos to show you, but I do believe some of them, I do believe they are on my website. So, I do a lot of high-intensity interval training. I participated in eight civilian military combine races, which essentially are races that mimic what military personnel go through when they are training for the military, but for civilians. And so it's a lot of, you know, climbing over walls, using ropes to make your way to the top, to get, you know, climbing through, um, you name it. It's a lot of getting really, really dirty. And being really muddy, of having to take your ears off because they will not be able to sustain, uh, the intensity of the situation and figuring out ways to make it work. It's so much fun. There's nothing better than getting dirty and really kind of roughing it. But, uh, there's a, you know, going into a wave pool and having to make it through these huge crashing waves. I also swam from Alcatraz to shore, which is a whole other experience, swimming in open water two weeks after there was a shark attack is an experience I can't quite convey accurately, but I will tell you that when you're in the middle of the San Francisco Bay and you finally look around and realize just how small you are and just how strong the current is, it is an incredibly humbling experience. Uh, and I climbed Mount Kilimanjaro with my beloved stepmother Pauline and my sister Lauren. And that was, you know, as we got higher in altitude, at the time I had a hearing aid and a cochlear implant, it was not yet bilateral. And I just remember that as we got higher, for whatever reason, my batteries were starting to die. And instead of having to stop and change my batteries repeatedly, I stopped wearing them. But early on in the hike, one of the guides and I, I was teaching him sign language and he was teaching me Swahili. And it turns out that it came in handy as we were getting higher up in altitude and closer to summiting.
Sleeping on a glacier is unlike any experience that I have ever had before, especially waking up in a tent when I think it may have been six degrees or less maybe, but these are all just sort of really experiences that made me feel so incredibly alive. Yeah.
Jeremy: Let's hope some of those experiences make it into the movie. Uh, William wants to know what is the most important first step someone can take when first losing their vision?
Rebecca: Well, it depends on how that vision loss, uh, you know, manifests itself for you. Listen, you're, you're talking to a psychotherapist. So remember that I'm a bit biased, but I think that one of the most important things you can do is to either speak to a therapist, or journal about it, or have someone in your life that you really trust. One of the things, you know, I've been doing this whole vision and hearing loss song and dance for a very long time, since I was, well, before I was 12, obviously. But what I found is that all of these conferences I go to, it was all about the science and the research. And in fact, when I was 15 and I went to my first Foundation Fighting Blindness conference, I was told there's going to be treatment in 10 years. And 10 years later, I was told there was going to be treatment.
And I don't know that scientists and researchers, while I think they were very optimistic and hopeful, I don't think they understand just how much we hung on their every word. And we really relied on it. And I don't think we focused enough on the emotional impact of losing these senses. It's one thing to not be born with these senses. It's another thing to lose them, right? So I will tell you that I have my cane. When I first started using my cane, I hated it more than anything. I never wanted to bring it. Now, my cane is one of my beloved possessions. This is my favorite cane. For those of you who are low vision or blind, I have the red reflective tape at the end of my cane, which is indicative of low vision and not total blindness. For those of you who are unfamiliar.
I also have the ball tip that is small, bigger than a golf ball, smaller than a tennis ball. And it moves very smoothly. This is a personal decision: The tip that you use on your cane is a very personal decision. There's no right or wrong. I personally prefer this tip because I find that when I use the marshmallow tip, that is one of the other forms of tips that you can have, that I tended to stab myself in the gut more frequently, particularly in New York City, where the streets are not as well paved, maybe in other parts of the country, but I found that I was able to move much more quickly. And so I think part of developing that comfort with using a cane was doing the O&M orientation and mobility training, even if you're not yet ready to use it. I think that for me, so much of this process, as soon as I found something or felt something that I was so uncomfortable with, that was a red flag to me that this is something I need to spend more time with.
It was the last thing I wanted to spend more time with. And it was one of the things that I absolutely needed to spend more time. So the first, uh, maybe five or six times that I used my cane in public, I cried. And that was sort of this whole coming-out experience for me, at least, of being able to, um, have that public sort of coming out, that announcement that I was no longer someone that someone would look at as a fully able-bodied person. And that was a transition that I had to make. Now I could give two you know what's about who sees me with it. I'm just trying to get to the next place I need to and be there on time, but it's a process. And I think that it's important for you to allow yourself to experience the emotions that come with it.
Jeremy: Great answer. Sandy asks, and this might piggyback on that, “Any tips on getting back to getting out, traveling, being as confident about doing that as before?” She too is questioning her independence on getting out and about in a post-COVID world.
Rebecca: It really did a number on us, didn’t it? It really did. For those of us who have had to take all of this time to develop the ability to be comfortable out in public, using our cane, or navigating new spaces and environments, it did a number on us to be sort of stuck at home. It let us sit with our thoughts and our anxiety and our fears for maybe too long, right? So, what I encourage you to do is, if you have people in your life, or, if there are, there are certainly a lot of…listen, Facebook is…everybody knows what Facebook can do, both good and bad, but there are a lot of groups that support travel for people who are low vision. There are a lot of people in your life or out there who want to travel, as well. I know that I am a huge -- I am -- I love traveling. I love trying new places and seeing, you know, what life is like there. I like meeting new people and seeing who they are and why they are the way they are, and so I encourage you to challenge that fear. To try to put yourself out there. I also encourage you: This is where the self-advocacy comes in. If your instinct is you don't want to use your cane because you don’t want people to…or you think that you look weird or sometimes people feel that it makes them look more vulnerable when they're using a cane, I encourage you to use it, and I encourage you to ask for help, because trying to navigate on your own, particularly when you're feeling anxious about doing it, is not going to help you relieve those fears and that anxiety. It is actually being able to engage with people and ask them to guide you or direct you that is going to give you that sense of your own capability not only to be independent, but to rely on others to ask for help and get your needs met.
Jeremy: Great, I will let you guys know it is 2:57 so we got time for a couple of more questions. Ken says, “Thank you Rebecca, you're amazing and an inspiration. My question is: what is the relationship between grieving and accountability, or taking control of one’s life? When does grief become unhealthy and unproductive?”
Rebecca: When does grieving become unhealthy and unproductive? Right? So grieving is a part of life. It's one of those things -- suffering is a part of life and what's interesting is we very much live in a world and a time and a place where we do everything in our power to avoid suffering and pain, right? We are always seeking pleasure, we're always seeking praise. For many people on social media, they are pursuing fame, how many followers can I get, how many likes can I get, how many comments can I get? We're looking for gain. We want to know that in any new experience we have, that we're going to gain something from it. We don't want to lose, we don't want to be shamed or disgraced, right? We don't want to be criticized and we do not want to experience pain. So, in avoiding all of those things, it means that we are actually quite literally taking a direct path for suffering and grief. Because we are pursuing these superficial things that are not going to give us a lasting sense of satisfaction. You know, there are all of these advertisements that we get for instance about how you can make your life better, how you can be prettier, how you can look any certain way and whatever the case may be, that's consumerism right? And we really buy into it. But everything you have is within you, and the grieving process is not going to be any easier if you're wearing the fanciest pair of shoes or the most beautiful top or if you got your Botox and your everything done, you're still going to have to grieve, no matter what it is, right? So what I encourage you to do is instead of trying to fight the grief, allow yourself to experience it and allow yourself to experience it with someone, not just by yourself. Allow yourself to be heard by someone. Allow someone to know that this is something that you're struggling with.
And when you make that room in that space, when you allow for it, when you accept that this is a part of the human condition, right, you make room for the ability to develop those other skills, to pursue satisfaction or happiness or joy, to pursue the things that really interest you. You have to go -- you can't get over anything, you have to really kind of experience it and go through it, but when -- I think sometimes we get stuck in grief when we operate from a victim mentality. So accountability is huge when, as you mentioned, accountability is huge for, OK, this is…allow yourself to feel everything you feel, but don't allow it to dictate how you live your life.
Jeremy: Excellent, thank you, Rebecca. Megan, we are at the top of the hour. It is 3:00, do we want one more question or do we call it wraps and follow up with folks later?
Megan: I think it's up to Rebecca, would you like to take one more question?
Rebecca: Sure, let me take one more question and message my next patient that I'm running a little late.
Megan: Go ahead, Jeremy.
Jeremy: Scrolling through the chat field here, Rebecca, how do you decide that you need to ask someone for help? You know, we talk about accountability and independence, but when do you decide to ask someone for help?
Rebecca: Right, so it all depends on the environment and the situation, right? I can tell you that when I go to an airport, and I'm looking for my gate, half the time I'm using my cane and I'm looking for my gate and I'm looking all around. In my head, I'm thinking who are all these expletives, who are all of these jerks who are seeing this woman using a blind person cane and not approaching her and saying, “Hey, do you need help finding your gate,” right? My instinct is, if I see someone who looks like they're struggling or needs help, I would approach them. But that's also me playing that sort of victim role, right? And so, what I do is I approach someone, listen, I got to make it to my gate so I don't miss this flight. So that's one reason why I may ask for help. I think that we hope that people will just get it, will just know that they need to help us. I think that we sometimes, how do you deem help? What is it that you think asking for help means? Does it mean that you're too needy? Does it mean you're incapable? You know, I gave a TED Talk actually specifically about the aspect of not only asking for help, but offering help, and this is my theory behind help in general. When you ask someone for help you let them know that they're needed and that they matter, and there's nothing we want to know more in this world than that we're needed and that we matter. So even when I help an elderly person across the street, in a very busy intersection, and I see the lights changing, knowing that there is no way in heck this woman is going to make it in time to the other side of the street. I may offer to help her and keep my arm up so people can see me and know that it is not safe for them to drive when the light changes, and when we get to the other side of the street and this person thanks me, there's no, I think, purer form of human connection than that moment. This is not a woman I know or am ever going to see again, but we are both human, doing our best to get through the world with whatever the circumstances are, so the way that I felt coming out of that is that I made a difference in this person's life and I think that when we engender that in other people by asking for help, we actually allow them to feel a sense of fulfillment, of knowing that they matter.
Megan: Thank you, Rebecca. Thank you so much for sharing your wisdom and your expertise. And thank you all so much for joining us today. This is the power of joy and gratitude, an AFB centennial celebration conversation. Thank you, thank you, and this recording will be on AFB's website at www.afb.org/100. Thank you and take care.
