Overcoming Hopelessness with LEGO's Blind Art Director

Will Butler:

You're listening to the Be My Eyes Podcast, I'm Will Butler and this week we're talking with Morten Bonde, Lego's blind art director turned author, speaker and storyteller, talking about how he overcame his own helplessness and despair about losing his vision and turning it into something much more powerful. We get deep with Morten, talking about Zen philosophy, self help and all of the strategies he used to research how he would overcome his own struggle with his changing vision.

Will Butler:

Before we get to that though, we have one more week of our giveaway for a magnification device unlike any other, it's the eSight 4. For those of you who are legally blind or have low vision, this is an incredible way to get a magnification wearable that doesn't plug into a wall. You can enter to win this thing by going to bemyeyes.com/esight, that's E-S-I-G-H-T. There's some rules there you should read through. But I brought in one of the eSight coaches, Richard Weatherford, to tell me a little bit more about what he gets out of the eSight experience.

Richard Weatherford:

Man, hands down it's being able to go and watch my daughter do things. I can't describe what a feeling it was to go to that first swimming practice and actually be able to watch her do her swimming practice. Last year, before all of the shutdowns and stuff, I remember being able to go to her school play and it was in my old high school, and I was sitting in the middle of the auditorium and I picked her out on stage. And I had had my eSight for a while by that point, but it was still these moments where you're just like, wow.

Richard Weatherford:

Yeah, that's hands down my favorite thing, right? But I love going to the museums, I love going to the zoos. But it lets me be there with her, you know? We can both be looking at the same, "Check out that zebra," and we're going to talk some zebra facts for a few minutes, but before you're almost kind of a spectator without, I don't know, this helps me be there, be in that moment and share it with her.

Will Butler:

So you'd ever be able to really do that before?

Richard Weatherford:

Not the same way, I mean, I got used to not seeing because my blindness started at my late teens. We actually found it because I had memorized the eye test for my driver's license. See, the only way I could get a permit, but that didn't work out come driver's ed. So that's how it got diagnosed, but at this point I had spent 20 years of being legally blind and I got used to doing everything either through just audibly having things described to me, but I had never been able to just see it in the first person and be able to experience it that way.

Will Butler:

I asked Richard, and of course, eSight is not right for everybody, luckily they will do a free home screening for you so all you have to do is enter to win at bemyeyes.com/esight and they'll give you a ring. Now here's our friend in Denmark, the art director turned author, Lego's Morten Bonde.

Will Butler:

Morten, thank you so much for letting us record this first conversation, and welcome to the Be My Eyes Podcast, thanks for joining us.

Morten Bonde:

Yeah, thank you for having me.

Will Butler:

You're someone who I've been speaking to for a while now and we haven't really had a chance to sit down and actually talk.

Morten Bonde:

No, we have been writing back and forth for quite some months actually, with some long gaps in between.

Will Butler:

You are, for those who don't know, correct me if this is incorrect, but you're the blind guy who works at Lego.

Morten Bonde:

Yeah, almost blind, I can add or correct, because I have retinitis pigmentosa which is an inherited genetic disorder that slowly shuts down or turns off the cells in the retina. So, today I'm legally blind, but I can see pretty clear inside a little tube or a tunnel of four degrees and then I have again some peripheral vision. So when you look at me and people observe me, they will probably not notice or be aware that I am actually legally blind. So in a sense I have an invisible disability that people are not aware of until they really see that things disappear right in front of me or I can't find the door handle even though it's just right there. So it is sometimes a little difficult to navigate.

Will Butler:

Yeah. It's really important that people understand this, because people always wonder what blindness really feels like or looks like. I mean, you said tube, I've heard before that having retinitis pigmentosa in an advanced stage is like looking through a toilet paper roll.

Morten Bonde:

Yeah, that's actually a little too big. A tin foil roll would be more correct, it's even smaller for me, so if you imagine standing in front of a person at a normal distance when you talk to people, then I can only see one eye and I have to move my eyes to the next eye to see the other eye and then to the nose and then to the mouth. And then I realize, this guy hasn't got any hair.

Will Butler:

Wow.

Morten Bonde:

So it is like slowly scanning without it being too weird, because if you move your eyes around a person, it might feel uncomfortable for the person that you speak to, unless you explain it. So it is taking in the reality out there in small bites and then construct everything in the mind.

Will Butler:

That's really interesting because that's exactly how I see too. But it's helpful to hear someone else talk about it, because I never really thought about it like that before, small bites.

Morten Bonde:

Yeah, I think it's partly also the reason why for a couple of years ago, I have been working as a senior art director at The Lego Group for 11 years now and a lot of those years I was working with this condition, creating visuals and creating TV commercials and I was attending photo sessions and I've been in dark studios. I am almost blind when I'm in dark places, so I was just coping with it, and then in '16, I finally collapsed. I couldn't keep up with the pace that I needed to in order to fulfill this role that I have, so.

Will Butler:

Where did the collapse come from? Was it emotional or was it physical?

Morten Bonde:

It was physical, yeah. I was simply, my body just shut down, I couldn't be around people and when I started thinking, my body just reacted with hives and shaking and I literally couldn't exist. So I simply had to stop and then I started slowly accepting that I had to make changes in my life.

Will Butler:

So you're saying that because of your vision you were literally getting hives?

Morten Bonde:

I think not the vision but the stress, the constant stress, the pressure and I think sometimes when you have a really strong will, you can actually longer than good is run on willpower. And I think what happened for me was that my body sent a really strong message to me, I always talk about the body and myself as two separate entities but the body, it was the only way it could stop this train and it was by physically stopping me and I couldn't continue any longer. So that was when I had to stop and, okay, realize that now I am...

Morten Bonde:

And I actually didn't know that I was legally blind until '16. I went to the doctor's or the ophthalmologist because I was suffering from stress and depression and didn't know why, and the examination turned out to show that I actually was legally blind. And that was a realization that was kind of a shock for everyone, even my family and myself, so that was when I said, okay, I have to make changes. I have to accept where I am and that I am slowly becoming blind and start making adjustments. And also look a little bit ahead at what am I going to do with my life? What makes purpose and how can I make a difference and all those things were kind of coming to the surface.

Morten Bonde:

So, yeah, I started this journey that I call it my journey from Hopelessness Street to Possibility Road, which is also the subtitle of the book that I wrote. And I basically explained how it is to live with a visual impairment that I have and that many people have and have difficulties in explaining. And then I started looking at how can you upgrade yourself to be able to live with such a disability so that it doesn't take over your life or control your life so that you can be in control of your life, despite of a disability.

Will Butler:

That's great. I think a lot of people will find, whether they are blind or not or losing vision or have some other disability that they're confronting, I think a lot of people find the advice in the book really helpful. I want to know though, art director, seriously? And do you still do that, you're an art director?

Morten Bonde:

Yeah. Well, I still have the title. I maybe have shifted some years ago from actually doing what a regular art director would do, because I slowly shifted my focus from being a visually dependent person into a more story writing scriptwriter, coming up with ideas and then working together with other people who were better at visualizing. I can still do a lot of those things, but it takes a lot of effort and a lot of time and so because of my tunnel vision and I can see pretty clear inside my little tunnel, I can still do a lot of the things that I normally did, but it just takes a lot of time and that was also the reason why I collapsed, because I was just maybe putting 400% more effort into things than other people would do pretty fairly easy, so.

Will Butler:

Can you give me an example? So you need to look at a new, I don't know, you're designing an advertisement or something like that and it's your job to see what it looks like and your vision is slowly...

Morten Bonde:

Yeah.

Will Butler:

How could you not realize you were going blind in that state?

Morten Bonde:

I was aware of it. That's again an interesting thing, the when will you stop and accept the isness of now? And I think that's what was going on. I was just trying to keep going until the very, very end of the possible. I didn't accept that I probably should stop and look at what should my future look like, so I was aware of the fact that I was somehow visually impaired in a degree, but I have no idea that I was what you would call legally blind. That was a surprise to me.

Morten Bonde:

And I've been in a lot of meetings with production companies when I was the final approver on the set and we were front of a 15" television screen and of course I was with other people, but I was the one saying, "Okay, let's continue." And I simply just asked them to replay it 10 times. And then I would focus on different areas of the screen and maybe follow one character. And when I was convinced that everything was fine after 10 reviews, I would say, "Okay, I'm good," and then continue. No one really questioned that, they thought I was...

Will Butler:

They just thought you were being strict, they were like, "Wow, he's really rough with us."

Morten Bonde:

Yeah. I did a lot of those things but I didn't really hide it, I didn't keep it a secret as such. But I didn't really talk about it, I didn't articulate that now I'm not able to see, I just stopped and spent a little longer in maybe navigating where are things and so it was just something I just quietly dealt with without maybe talking too much about it, which of course was the lesson here. The day that I realized I have to be open about it, everything became much easier because I actually functioned a couple of years with no retinitis pigmentosa.

Morten Bonde:

After '16, in '18 I was still in production mode, so I was in a film set and the production company, they knew then, so they would actually do everything they could to make it easier for me when I spoke about it, so they said, "Okay, Morten, we know your condition, you have to sit all the way back, right?" Yes, thank you. And they brought in an extra screen that was smaller than the other one. So when I started talking about it, it became easier for me to be in this, so you can say that opening your mouth, talking about it, is preferable to not doing that.

Will Butler:

I remember that moment and how scary it was, the idea of opening your mouth for the first time and really talking about it openly.

Morten Bonde:

Yeah.

Will Butler:

It's terrifying, right?

Morten Bonde:

Yes, it is because so much of our identity is bound in what we do. So, in this Western world, busy hamster wheel world that we live in, that we are often describing ourselves based on what we do. So a lot of identity comes from that, so I think unconsciously, if I'm not doing this anymore, I will not be me anymore, what will I be then? And that's a scary thought, and I think I started being more interested in who I am instead of what I do, and, yeah.

Will Butler:

What do you think people were thinking about you before you talked openly about your condition? What do you think people thought? The people you worked with and the people in the street.

Morten Bonde:

I don't really know, I actually think maybe people... No, I've always been kind of an introvert person, so I didn't really talk about this unless it was really, really necessarily. So, I actually know as a fact that some people found me kind of arrogant because imagine that you're walking in the office building and you walk just by someone standing right next to you and they silently they say hello, you know, without a voice, they just nod or raise their hand or something and I just walk by them and ignore them. And I realized a couple of years ago when a person came up to me after I had started talking about it and she said it was actually in my kids' school and she came up to me and she said, "I'm so happy now that I know that you are legally blind and becoming blind."

Morten Bonde:

And I thought it was a strange thing to say, but she said, "No, let me explain, because for many years I just thought you were an arrogant idiot, but now I realize you just couldn't see me all those years." And that was when I said, oh my God, how many people are actually thinking about me in that way? And I just said, it's necessary for me to start talking about it to explain why, if people think that about me and it could be just this one person, but I don't think so actually. And I started openly sharing this and it was really important for me when getting into a meeting with new people to tell them that if I ignore you or if you feel that I am ignoring you, it's because I can't see you so you have to raise your voice and you have to do something to catch my attention. Thank you for telling me.

Morten Bonde:

So much of it comes back to yourself, if you are good at explaining and sharing then things will become easier. But I know it's difficult because I also feel sometimes I don't want to be about that, I don't want to be characterized as the legally blind guy. I just want to be me. So there is a balance there.

Will Butler:

I was 23 years old and maybe even 21, I was in college, at university here in California and I remember writing a note on Facebook because I realized that I was doing exactly what you're saying. Walking by people on campus and not acknowledging them and it all came crashing down on me, I realized, like a ton of bricks, I was like, oh my God, I'm probably ignoring all these people and it tortured me. So I wrote this note that said, I think the subject line was, "I'm not a dick I just can't see too well."

Morten Bonde:

That's great.

Will Butler:

In my 21 year old brain, I was trying to somehow warp it and bend it into a way that sounded like I knew what I was doing or like I had some level of confidence about it, but the truth of the matter is I was just scared that I was burning all my bridges, ruining relationships left and right. The truth of the matter is it probably only happened once in a while, but that just goes to show how much it weighs on you after a while, and it really starts to just build and build and build until you feel like you're, pardon the cliché, but living a lie, you know?

Morten Bonde:

Yeah. I definitely know what you're talking about. I felt living a lie, I don't know why it is and often it's because we're so hard on ourselves, so tough. I started exploring why we had these inner dialogues that often have this negative tendency and often talks you down instead of cheering you up and I started working consciously with that inner dialogue. And I actually gave myself some challenges through four month to try to reprogram the way that I was perceiving things.

Morten Bonde:

I realized that I was really fast in judging a situation, often just before even really having the time to think about it, I would just judge something and it could be in a conversation I would feel maybe that the conversation had a sort of, is this person blaming me for something or am I not good enough? And all those inner voices that were talking to me. So I just started calling bluff on them and basically started paying attention to what was going on in my head while I was observing things and talking to people.

Morten Bonde:

And it turned out that a lot of my self talk was negative all the time, so I consciously started changing that. And it is actually also a huge subject in the book, the third part of the book is about these four challenges and four months to reprogram my subconscious mind to see possibilities instead of limitations, so instead of always discovering the negative side or the limiting aspects of the reality that I was experiencing, I taught myself or trained myself to see the positive side on it. And it's really difficult because most of our focus and our thoughts are actually negative, we are human beings, we are trained to anticipate what can go wrong and rarely what can go good. So I started that unlearning and relearning process.

Will Butler:

Right, negativity bias I think they call it or something like that.

Morten Bonde:

Yeah, exactly.

Will Butler:

Do you go to therapy?

Morten Bonde:

No.

Will Butler:

I don't know what it's like in Denmark, but in the States, so many people, it's become so normal to go to therapy and work out your problems. And a lot of what you're describing sounds like cognitive behavioral therapy.

Morten Bonde:

Yeah.

Will Butler:

And a lot of the core principles of that. Have you researched psychology and all that stuff? It sounds like you have.

Morten Bonde:

Yeah I have a lot of. Actually I started researching how can you change your habits, the ways that you automatically deal with things, I started getting interested in neuroscience and religion also actually, I started researching why do we have religions? Where do they come from? And why do we have separate religions? And what happened in the world before religions? I really, really went into a massive research period of maybe even I think a year, I consumed around 80 books or something like that. I was just a sponge.

Morten Bonde:

So a lot of that knowledge is what is put into the book, but from my own experiences with it, so I should say the book is called Sentenced to Blindness – Now What? And that book was my intention, it is a declaration of intention for the rest of my life, how I want to live my life, how I want to behave and navigate in this going blind situation that I am in and I started uncovering all those things. But I realized that I went to a couple of therapists around '16 and prior to that, but it really didn't take me anywhere because most of it was talking about things that had happened in my life, and much of the talking is going on in the conscious mind and a lot of the things that we are dealing with is unconscious or subconscious.

Morten Bonde:

So I started doing my own sessions and I started meditating a lot and I started actually doing my own recorded sessions that I was listening to over and over again, so kind of a programming.

Will Butler:

Explain that, you'd record your own voice or something like that?

Morten Bonde:

Yeah, and I did my own meditations actually, guided meditations, for myself. So the things that I knew that I was going to work on, I recorded that as an intention, so as a script that I wrote, and I recorded my own voice. And then I listened to it in meditations again and again and again, and it was about, for instance, a lot of the things that I was talking about in my head to myself was that you're not good enough for this and no, you can't do this because you're visually impaired, no, you can't call this person because he's too important to wanting to talk to you.

Morten Bonde:

And all those ideas that I had, I wrote down all the opposites to them and then I recorded them and I just replayed it again and again while meditating and while walking and doing other things where I could actually listen to something. And I started noticing that I began automatically to think the thoughts that I was speaking through my own voice and in my headphones.

Will Butler:

Wow, that's so wild.

Morten Bonde:

Yeah, I know it's pretty insane. I was really focused and motivated to try to change the habits and my own patterns of behavior.

Will Butler:

So, give me an example of the type of positive affirmation that you'd be reading into a microphone in the middle of the night in your house or something like that.

Morten Bonde:

It's simply it could be, "I'm stupid." Then I can say instead, "I'm awesome." It's really banal and it's almost ridiculous when I say it out loud, but it really, really had an impact on me.

Will Butler:

So would you play it on loop? If you were saying, "I'm smart and intelligent," would it play on loop? Would it play over and over? Or did you copy paste it and have it play 100 times? Or would you just sort of restart the audio file over and over? Tell me how that worked.

Morten Bonde:

Yeah, I did maybe 15 minutes of a script that was tailored towards something that I wanted to do. For instance, deciding to be a TEDx for instance, I'm going to do a TEDx here in '21 at one point. Then I would write a script with affirmations that would encourage me to seek out all possibilities and opportunities that would lead me to the end goal. And then maybe 15 minutes, and then I would just loop it into maybe one hour or two hours with some kind of meditative music or whatever. And then I would just put it on, instead of listening to Led Zeppelin or Metallica or whatever, I would just listen to it again and again and again.

Morten Bonde:

And I realized that I started doing things that I would normally not do. I started putting myself in positions that would put me in the direction of where I wanted to go. And that was later in the process, in the beginning I just wanted to have a voice that would say, "Morten, you are so awesome for trying to do what you're doing right now, you're going to make an impact on people's lives by writing this book." Having those positive voices in your head instead of a voice saying, "No, you won't ever finish this book, it's impossible. Do you know how difficult it is to write a book?" It's so easy and we do it unconsciously all the time, so I just started noticing and saying, "I don't want that voice in my head when I decided that I want to do this. I want another voice there."

Morten Bonde:

But I have to guide that voice into being my positive coach instead of my negative coach talking me down, so it is about awareness and being mindful of what's going on.

Will Butler:

It makes so much sense, because who better to convince yourself than you, right? I mean, we spend so much time looking for the perfect self help book, the perfect mantra, the perfect meditation, but why not just record your own? Tell yourself what you're trying to do.

Morten Bonde:

Exactly. You don't hear about it a lot. I don't hear about it a lot.

Will Butler:

No, I like it though.

Morten Bonde:

I was just convinced because I read a lot of material that convinced me that you can never, ever get that affirmation from anyone else than yourself. You will never believe in anyone telling you that you can accomplish something if you don't believe it yourself, so how do you convince yourself that you can actually do things? And I must say, that these days in COVID-

Will Butler:

Literally convince yourself, yeah.

Morten Bonde:

Yeah, these times of COVID isolation, I really have to be mindful of what's going on because I'm pretty much isolated. We've been working from home since March last year in The Lego Group because of this whole situation. So because we can work from home, we are doing it. And I'm isolated even more because we live in the countryside and until '16 I was actually driving my car and then I stopped doing that in '16, so I've been very isolated for almost a year now. So I have to pull myself together every day in order not to feel depressed and sad because of being alone so much of the time, so.

Will Butler:

What do you do in the morning when you wake up?

Morten Bonde:

Well, the first thing I do is remembering what I decided the evening before to be my first thought of the day. So, maybe in the evening I said, "What is going to be super awesome tomorrow?" And that would be talking to Will from Be My Eyes, it's going to be an inspiring talk, I'm looking forward to that. So that is the conscious decision to think about when I wake up in the morning, so I would wake up in the morning and the first thing I think, yeah, that's going to be awesome.

Morten Bonde:

So I start by consciously deciding the first thought of the day. And then I get up and often I'm just going straight into the office because why should I bother dressing up and all that? So I'm just going in there, but I always decide to go for a walk in the middle of the days while it's still bright outside. Here, Denmark, it's getting dark around 4:00 PM in the winter, you know that, you've been to Denmark.

Will Butler:

Maybe 3:00 even, yeah. Mm-hmm (affirmative).

Morten Bonde:

So, I consciously decide what the first thought of the day should be, and I often realize that if I'm not diligent in that, the day can go all wrong if I start on, "I hate my situation, I hate what's going on right now." And that kind of defines the day if I'm not diligent in the mornings thinking about what I decided that I wanted to be the first thought.

Will Butler:

With the writing of your... I'm still obsessed with this idea that you wrote scripts for yourself and read them to yourself, but with that concept, I wonder if the bigger impact is listening to it or just the fact that you wrote it down and read it out loud.

Morten Bonde:

Everything of it. It is actually everything of it. I think what happens, and the magic in it, is that when you start thinking about it, the idea comes to mind, normally you would never put it down to words, you would just think about it. But our minds, it doesn't remember, it doesn't deeply remember. So when you have a thought, you say, "I'm awesome," yeah, you forget about it 30 seconds after you got the thought. And then something comes in and maybe it's about, "I'm actually not that great after all, and I have all these problems and I have all that." So it kind of takes over again.

Morten Bonde:

So when you decide to write it down, you've spent focused time on deciding what it is that you want to be a controlling factor in your life. And then you write it down, and then afterwards you start looking at it, you read it, then you start speaking it, and then you listen to it. So you really get exposed to your own decision and your determined focus again and again and it slowly becomes the way that you think and I can find a couple of these, I have two on my YouTube channel. I have two 20 minute guided meditations that I actually shared because I write about it in the book and I decided to publish them, so you can find it on YouTube.

Morten Bonde:

And that's a whole guided meditation that starts with relaxing, calming down the mind, breathing properly, starting to get into the meditative state and then I read out these affirmations and then at the end I take you back slowly into conscious, awakened state. I think for a lot of people it's really strange and unfamiliar, but it's really just a nice break from the humdrum of everyday life just to spend 20 minutes calming the mind, relaxing, and often I find that after 20 minutes of relaxation like that in meditation, all the problems that I had 20 minutes earlier, they've kind of disappeared, I can't remember why I found any problems in this issue that I have. I can easily see that I just have a write a mail to this person then I have to just call this guy, and then everything is good.

Morten Bonde:

And prior to the meditation it was just a huge problem that was impossible to fix in a way. But that's because we have to get out of our minds to see solutions on problems that we have. I think it was Einstein, he had a really powerful quote, he said that, "We can't solve problems with the same thoughts that we used when we created the problems." So he actually realized that often our problems are imaginary, they are made up, we think them and then we can't solve them with the same thoughts. We have to get out of that thought and then get into a new thought pattern and then we can see it from a new perspective and then it's not a problem anymore, then it's a challenge that I can do something about it.

Will Butler:

Did you ever think you'd be leading guided meditations?

Morten Bonde:

No.

Will Butler:

Least of all meditating at all.

Morten Bonde:

No, never ever. It was simply something I discovered, it was something that I was introduced to by a stress coach back in '14 I think, but I didn't really understand why I had to do it. It was just a suggestion. And then I did a couple of sessions and I thought it was silly to sit and focus on your left toe and I couldn't see the relevance of it. And I actually have a story in the book about how I slowly realized that something that I learned many years ago made super sense and now when I understood the science and the neurochemistry and all those things that are happening when you meditate.

Morten Bonde:

So I started accepting it and I started implementing it in my life and I could see, when I'm not doing it, I slowly feel all the old problems coming back. And when I'm good at meditating, I'm just sort of hovering above problems in a way. Yeah, but I never thought I would be a person talking about meditation and mindfulness, but it is necessary for me to keep at it.

Will Butler:

I think a lot of people find the prospect of meditating really difficult and they find it really hard to get past that initial feeling of, "This is really silly, I'm not going to focus on my left toe for 20 minutes."

Morten Bonde:

Yeah, it is, and that's, again, the mind, and what you want to do in meditation is sort of bypass the mind. The mind has all these ideas and opinions and it's the analytical center of your self and it can be an obstruction, it can be your worst enemy because it doesn't really know anything. It's just a silly set of automatic programs who run and when you realize that I don't want to be that program anymore, I can write my own programs, and that's below the conscious mind, that's in the unconscious you do all that.

Morten Bonde:

So, yeah, I think one of the meditations that I did, I just did it the other day, was actually how to introduce people to meditation. What is it? Because it sounds like it's difficult, but it's really not, it's just you're actually not doing anything, that's the whole idea behind meditation. You're not doing or trying to do anything, you just spend some time and I think the last guided meditation is really inspired by Alan Watts, I don't know if you know Alan Watts, he was a British philosopher and writer and he studied the Eastern philosophies and introduced them to the Western culture in the '70s.

Morten Bonde:

And he had a really, really easy to understand explanation of what meditation is, and I actually did a guided meditation explaining that to people. So while you are in a meditative state, you're told what it is that you are doing and why you are doing it.

Will Butler:

Yeah, for some people sitting still and not doing anything at all is the hardest thing to do.

Morten Bonde:

Yeah. It is, and that's where you realize, "Oh my God, I'm so uneasy all the time, I'm tense, I'm worried, I'm thinking." And then people don't want to do it anymore because it's uncomfortable, but it's there that you realize what is going on, really going on, what you're really focused on and is it your possibilities or is it all your limitations? And that's not necessarily a nice thing to realize. But it's necessary if you want to get on, if you want to leave the problems behind or overcome them.

Morten Bonde:

Because I realized I couldn't take away the blindness, I can't think it away. I was trying to think it away for many years, and I have to be able to live with it as a companion for life. It's going to be my friend, it's going to be something that will make me strong, something that's going to make me more insightful of myself and other people. So in a way it's a blessing, because the more vision I lose, I decided with the universe that the more vision from my eyes that I lose, the more vision I will get in sort of my intuition. I said to the universe, "Okay, it's okay you take my vision, but I demand getting that back as insights and wisdom." [crosstalk 00:43:29].

Will Butler:

That's like a law of physics or something like that, right? The conservation of something. Nothing is ever actually removed, right? Yeah.

Morten Bonde:

No.

Will Butler:

I really like the analogy of your vision loss or whatever you want to call it as a friend that you kind of take around with you. I was talking to someone else about this recently. I think of it as like a little child, and the day that I became legally blind was sort of the day that that little child was born. And it takes a while for children to grow into competent adults that can take care of themselves. And so I've only been blind for about 12 years, so my blindness is only 12 years old, right?

Will Butler:

So I'm walking around every day with a 12 year old. And 12 year olds are a lot calmer and easier to get along with than three year olds, but it still hasn't figured everything out yet, and so on the days when I'm struggling I try to look at that child and be kind to it and say, "Don't worry, tomorrow will be a better day, you're just going through puberty," or whatever it is, right?

Morten Bonde:

Yeah. Well, that's really healthy, and that's a really beautiful way to deal with a condition. I often hear, maybe you hear that too when you talk about your visual challenges with other people who have normal sight, the response that I often get is that, "If this was me, I would die."

Will Butler:

Right.

Morten Bonde:

It's such a silly thing to say.

Will Butler:

It's insulting.

Morten Bonde:

People also say, "I would kill myself if I knew I was going blind." And of course they wouldn't do that, but we always, our problems, I can't remember the phrase in English but the amount of bad things in your life is constant. It depends, the level of them varies, but I think every person have a feeling that something is not right in their life. And it's just the perspective of it and the degree of it can vary, but the feeling of having something in your life that is troubling you is almost equal for everyone I think. I don't know if it's true.

Morten Bonde:

But when we're dealing with something as losing your sight, people who have "normal" problems, in quotations, they look at you and say, "Whoa, you can overcome this, you are such a strong person." And my claim is that everyone are able to do that when they have to, but normally we don't have to deal with vision loss, but we rise to the occasion, right? When we are dealing with it.

Will Butler:

Well, in America no one would say that but they're all thinking it. In America we have this thing called politeness, which is actually much more rude than you might think, so people won't say, "I would kill myself if I was blind," but a lot of people are thinking that. And people are much more forward about that in other countries. But the funny thing is, as blind people, we look at the person saying that to us and we're like, I would never want to be in your situation because you have problems that I think sound awful, you know?

Morten Bonde:

Yeah.

Will Butler:

Yeah. I like that a lot. So is this what you were talking about at the beginning when you were talking about upgrading yourself?

Morten Bonde:

Yeah, it is and I decided to use this whole transformation process as something that could be an opportunity for myself, but also for other people. So I said, okay, if I'm going to transform myself, I actually have a mind and a psyche from childhood that would always focus on what was wrong with me and other people. I think people considered me as a kind person and empathetic, but in my own thoughts, I was really always hammering myself from all the things that I couldn't do. Even before I noticed or learned that I had retinitis pigmentosa, I was always beating myself up.

Will Butler:

Sensitive. We call it sensitive, right? You were sensitive.

Morten Bonde:

Yeah, maybe. I think a lot of people maybe have the experience but maybe they're not really aware of it and not able to talk about it, but when I was then sort of reset, I remember I had this moment in the municipality office in December '16 where I had come to the conclusion that I had to be retired. I couldn't do anything anymore, I couldn't accomplish anything in life because I was becoming blind. I was really sad about everything, and I had this moment where we were sitting in the municipality office and discussing my early retirement plans, and all of a sudden I had this-

Will Butler:

But you were like 30 years old or something like that?

Morten Bonde:

No, I'm actually 47.

Will Butler:

But when you were retiring, when you were considering retiring, how old were you?

Morten Bonde:

That's in '16, so that's four years ago.

Will Butler:

Okay, so you're 43 and you're considering retiring.

Morten Bonde:

Because at that point, that was when I could be around people for maybe half an hour and then I had to sleep for three hours because I was just exhausted.

Will Butler:

Okay.

Morten Bonde:

And that's when I say that stress and depression and everything just overtook my life and that was of course because I didn't deal with it. But I had this feeling that there I died, I couldn't be myself anymore so I just had that feeling of, no, this is the end. But then I had a sort of strange moment of so much clarity, I had this voice in my head almost saying, "What do you want to do with your life? You're using all your precious lifetime now to be sad and depressed. Is that what you want?"

Morten Bonde:

So I had this almost awakening, so I said I have to figure out how to upgrade myself, the worst enemy here is myself. How can I befriend that entity inside of me to be my friend instead of being my enemy, this thing, this mind of mine? So the whole writing the book and becoming a public speaker and all that was simply to commit myself to a project for a long time, to sort of change the automatic reactions that I was having, to consciously deciding what kind of person do I want to be. And, yeah, it's almost four years now, it's insane how long.

Will Butler:

It's interesting, it's almost like in order to be the person we want to be, we just pretend that we've figured it out and then everything sort of falls into place.

Morten Bonde:

Yeah, it is, it is strange, right? Because [crosstalk 00:51:30].

Will Butler:

It's like you make believe until it's real, or something like that.

Morten Bonde:

Yeah. I think it's Tony Robbins, the coach, he says, "Fake it until you make it," I think that's the phrase.

Will Butler:

It's tough advice to follow.

Morten Bonde:

Yes, it is. But I think you have to be at a point in your life where you realize there are no other ways, if I continue on this path, darkness is just awaiting. So you have to really be motivated to change otherwise it will be very difficult. And I think what really made a difference for me was one day when I was one day when I was sitting, my wife, she works shifts in the weekend and I was sitting home, I couldn't drive anymore, I couldn't go anywhere. I just felt so depressed, and she came home and she looked at me and she just looked into the eyes, she looked at me and she saw this man who was defeated by this.

Morten Bonde:

And the look in her eyes made me realize that it wasn't only me who felt sad and felt grief, it was my whole family. So that actually woke me up and I said, no, I can't be this for my two sons and my wife, I have to deal with this in a constructive way and I think the love for them just made me realize I had to do something. And they can't be burdened with this. So basically it was the look in my wife's eyes that made me realize I have to do something.

Will Butler:

Mm-hmm (affirmative), that's interesting. Have you read any other great self help? Is your sort of approach based in any other self help gurus like Tony Robbins?

Morten Bonde:

I just studied a lot of different, Eckhart Tolle.

Will Butler:

Eckhart Tolle, yeah, I was hearing a little bit of that for sure.

Morten Bonde:

Yeah, he's a huge inspiration. I read The Power Of Now more than 10 times and then everything else that he wrote. And I also listened, I had a lot of time, I had to spend three hours every day in public transportation because of where I live and so I had a lot of time on my hands and so I basically listened to everything that I could on YouTube that would keep me thinking in this way. So I studied the work of Eckhart Tolle, and Jiddu Krishnamurti, he was an Indian teacher.

Morten Bonde:

So many inspiring authors and teachers, I just immersed myself in their work and slowly I started thinking like that and it became natural for me to reject negativity. Not fighting against it, but just don't go along with it, when people start complaining I just smile and I stop debating. I don't participate in it until they realize it's really boring to be having this monologue with themselves, so I don't argue with people. But I just don't go along with it, so it's a conscious choice every time that you are standing on front of a situation where you say I can actually influence this in my mind. I can see this in a different perspective than I normally would.

Will Butler:

I'd love to get your reading list. You should post it on your website or something.

Morten Bonde:

Yeah, I have the reading list in the end of the book and it's also on my website and I'd love to share it.

Will Butler:

Awesome, yes. What is it, mortenbonde.dk?

Morten Bonde:

Yeah, it is, and if you are browsing from a computer that's set to English language it will automatically go to the English version of the website, so in there I have a lot of content in there that's piling up over the last couple of years, so.

Will Butler:

So, how is your relationship with your family now? Now that you've come this far in four years.

Morten Bonde:

You know, I think everyone, now, this is my take on it, and I think that the benefit is that my sons, they are the age of 15 and 17, I think they learned an important lesson in how you can actually take yourself out of situations or problems that you think you can't deal with because it's just out of your power. Sometimes you have to realize, it's out of my hands, and then accept it, and sometimes you can actually do something about the problems you have. And I think that is something they see and maybe unconsciously will implement in their lives.

Morten Bonde:

And then I think we just developed a no bullshit filter in our household. If someone have something that is bothering them, we talk aloud. It's not permitted to walk around with grudges for days on end, you have to be open about everything and I think that's really a relief actually. So if someone is having a bad mood or whatever, you kind of know it's not because of me because we have a deal, right? If I've done something that bothers you or makes you angry, you have to say it out loud. We can't read each others' minds, so that's kind of the philosophy we have.

Will Butler:

The boys are old enough that they probably remember what you were like before you got better.

Morten Bonde:

Yeah, and the strange thing is that when I talk about it today, my sons didn't know anything about me having a disability. They didn't know that I had a condition that would make me go blind. And I'm actually surprised by that, I thought that we had an open dialog about it but they didn't have a clue. It was a shock to my oldest son. When he read my book, it was a shock to him to learn that I was suffering from stress and depression and that I had a disability that would make me go blind.

Morten Bonde:

And I just realized maybe I haven't really talked about it to them, they were just noticing some things with their father, they had to sort of say, "Okay, there are stairs there." [inaudible 00:58:27] thought that I had a little bit of something, a blurry thing. So sometimes we have an internal understanding of what people might know but that's really not reflecting the reality.

Will Butler:

Wow, that's a rare experience to have a 17 year old that can read your book and get such an incredible insight into his father's mind. What else did he tell you after he read it?

Morten Bonde:

Yeah, I was actually a little concerned when my oldest son said, "I want to read your book." I was thinking about it, what did I write? I didn't really write the book for them to read. But, sure, he could read it, there was nothing in there that he couldn't know, but I was just thinking about it, should I protect him? Could I share this with my son? What would he think? So it was actually pretty strange for me to know that he was reading all this. But, no, I think he tries to adapt some of the...

Morten Bonde:

There was this video on YouTube with a Hindu monk who said, "Do you have a problem in life?" And if you say yes, "Can you do something about it?" Yes. "Then why worry?" And he said, "If you can't do anything about it, then why worry?" So basically he's saying that if you can do something about it then you shouldn't worry about it, you could just do something about it. And that has become sort of a joke every time that we think we have a problem that we can't deal with and we get all stressed about it, then we just say to each other, "Can you do something about it?" "Yeah, right." And we say it with this Indian accent, "Can you do something about it? Then why worry?" And it has become sort of a mantra.

Will Butler:

That's [crosstalk 01:00:35].

Morten Bonde:

I hope they will get something. I didn't really think deeply about it when I wrote the book that some day my family would read it. I just needed to write it and then one day they read it, and of course they got surprised by some of the things, and [crosstalk 01:00:57].

Will Butler:

Was there anything that your wife was surprised by?

Morten Bonde:

My wife was really surprised when I made a video that shows how I see. One day after going to the ophthalmologist and he said, "You are legally blind," I came back and I said, "I've been trying to share with people how I see for so many years but no one really got it." And then I walked around in the living room and in my house and took video footage, and I made a video where I put a filter on that actually shows how I see. And I just took pictures of everyday life scenario things and I put it into a video and I didn't really talk that much about it.

Morten Bonde:

And then I invited my wife and I said, "Do you want to see this video I made?" "Yeah." And she looked at it, and after one minute, I looked at her and I got surprised because I could see tears were falling down her, is it called chins? Yeah, she had tears in her eyes and I said, "What's wrong?" She said, "Why didn't you ever say something?" And I said, "This is what I've been trying to say all those years."

Will Butler:

You're like, "Why worry?"

Morten Bonde:

Yeah, she had to see it with her own eyes before she realized, okay. And then everything became clear to her and she said, "Okay, if you are seeing the world with this vision, I understand why you are completely drained of power coming home from work." So I used that video actually as an explaining tool for the municipality and for my Lego leadership team and when they looked at it they said, "Oh my God." But it was curious because I tried to explain it 1,000 times, this is how I see, and they didn't get it until they saw it themself.

Will Butler:

Yeah, it also shows the power of time and adaptation, because you weren't as stressed out by it as they were when they were watching it for the first time, because you came into it gradually and you had learned to cope with it, whereas you dump that on someone all at once, they're going to get very overwhelmed. And I think that's why sighted people pity us so much is because when they imagine being blind, they imagine it all at once. Going from where they are right now instantly into blindness, and that's incredibly difficult to fathom, right?

Morten Bonde:

Yeah.

Will Butler:

It can also be easy to freak people out with those sorts of simulations.

Morten Bonde:

Yeah, I understand. But for me it was also a powerful tool, especially when I had to talk with The Lego Group management and try to explain to them what was going on with me and why we had to make some adjustments. And also the municipality, I got some help from them. But I just had to show them the video and then it was just like, "Oh," and their jaws would just drop and they were like, "Oh, God." And I published the video on YouTube and I posted it on some of the retinitis pigmentosa groups around the world and I said by all means, if you can use this video in your efforts to try to explain how it is to have retinitis pigmentosa, just use it.

Morten Bonde:

And a lot of people came back and said, "What a relief, I showed this to my family and now they get it." And I hear so many people with retinitis pigmentosa that are being attacked by sighted people because they believe that they are faking it, like, "You're not really blind, don't overdramatize, and you can see, right? You can see a little bit, what's the problem?" And for me, I have this huge doughnut in front of my eyes that are not black, it's flickering, it's flickering bright light all the time. And then I have this little whole in the middle where I can look.

Morten Bonde:

I try to explain it often by if you get up too quickly and your eyes sort of flicker, you almost feel dizzy and then your vision gradually comes back. That's what I experience all the time with a little hole in the middle, and then people are like, "Oh, that's something I can understand."

Will Butler:

It's interesting and I think being the only visually impaired person at a workplace is tough because you really have to invent everything yourself. And as much as your workplace wants to help you, you have to kind of figure out what to ask for, yeah.

Morten Bonde:

Yeah, and there's a line between not wanting to be the one asking all the time and having to make other people around you change what they feel is natural for them in order to accommodate your needs. So often, you just [crosstalk 01:06:30].

Will Butler:

Well, that's one of the reasons we came up with Be My Eyes For Work, I don't know if you've heard about it.

Morten Bonde:

Yeah, no, I haven't heard about that.

Will Butler:

So we can create these private networks, Be My Eyes networks, now that are internal to a workplace. So you could set up a Lego, for instance, Be My Eyes Work account and you could decide who is in it, set up different groups, so, IT, my sighted volunteers, HR. Whatever departments you wanted. And those groups would have 10, 15, 20 people who agreed in advance to be available. And whichever one was available when you called, they could answer. So you wouldn't have to figure out who to call anytime you needed to ask for something, and you wouldn't have to worry about bothering anybody because we set up this sort of mesh network of availability.

Will Butler:

So, a lot of organizations are adopting it, just to solve that problem you're talking about, about how do you know who to ask and how often is appropriate to ask for help, right?

Morten Bonde:

Yeah. I remember now, I actually attended a webinar I think a while ago that you and your colleagues were setting up, and I remember there were some Microsoft people and some tech people there, and I actually remember that and I remember that it really impacted me when you talked about the independency of you being independent of asking others to do you a favor is really important. A feeling that I can accomplish this without being again the one having to, "I don't understand," and that really makes sense, the feeling of feeling complete.

Will Butler:

Morten, it's amazing to talk with you and I love the way that you just studied basically, you researched, you read dozens and dozens and dozens of books and you decided to reprogram your mind. I imagine it a constant process though, it's not like you've arrived?

Morten Bonde:

No, it's a life process, and you can compare it if you go and work out two or three times every week on your physique. If you stop doing that, you get fat, if you stop flex your arm, it loosens and you lose that muscle, and it's the same here. It is a way of life and I think the most important ability to cultivate in this is a mindfulness behavior. Constantly being diligent and observe what you do in the present moment. And it sounds like such a cliché and it's been repeated again and again and again, but I didn't understand anything about it until I started doing it.

Morten Bonde:

Reading about it and hearing about it isn't the same as doing it, and living it, and that's the huge difference. And you talked about it yourself, a lot of people hesitate to go into meditation because it sounds difficult and they don't want to do it, but I think for me it was you have to do it or you will be in misery for the rest of your life. So I have to do it.

Will Butler:

Yeah, I love it. I love digging into the psychology of all this, we're going to be doing more of this on the show this season, and check out Morten's video about what it's like to live with retinitis pigmentosa among all the other thing we've talked about in our show notes, bemyeyes.com/podcasts. Thanks so much, Morten, it's been a real pleasure to talk to you and I hope you'll come back some time and update us about what other projects you've been doing.

Morten Bonde:

Yeah, it would be my pleasure and thank you for having me, it's been a great experience and really nice to finally talk instead of just writing.

Will Butler:

Yeah, I hope I'll be back in Denmark soon enough.

Will Butler:

Thanks so much for listening to the Be My Eyes Podcast, we'll be back next week with some very fun new content, can't wait to share it with you all. In the meantime, this is your last chance to win an eSight 4, bemyeyes.com/esight. We'll see you all next week.

‍