Reid My Mind

TR:
Hey Y’all.

I try to produce this podcast several weeks in advance of the release. I don’t always have as much lead time as I’d like.
In this particular case, I did.

With the latest police murder of George Floyd and the world wide protest that followed, I don’t feel comfortable releasing an episode without acknowledging this senseless and shameful killing.

I love producing this podcast and I truly think what you’re about to hear is a great episode,
but as a Black man I can’t help but feel like my focus should be on fighting for change. Truth is though, it’s not just Black people who should be fighting.
It’s all of our responsibility and if I’m being honest, I think the burden should be less on the Black community.
If you have the urge to inform me that there are white people fighting, please don’t. I know that. I’d ask you to consider your own role as I’m trying to figure out mine.

Not acknowledging the pain just felt like it would add even more.

Rest in Peace & Power to Mr. George Floyd and the rest of those murdered by the Police.

Thank you Reid My Mind Radio Family and I hope you understand why that was necessary.

Now, let’s shift gears and get into what I think is a goodie!

Audio: Sounds of airport fades into the inside of a plane.

From the planes PA System…
Flight Attendant:

Good day passengers.
Welcome aboard flight 99 to a better place!

Inflight service will be coming around soon with snacks!
In the meantime, please sit back, relax and enjoy your trip.
We now have a message from the captain.

From the planes PA System:

Music begins…

TR:

What’s up Reid My Mind Radio Family!

Welcome aboard the podcast bringing you compelling people impacted by all degrees of vision loss from low vision to total blindness.

Every now and then, when inspired, I bring you stories from my own experience as a man adjusting to becoming Blind as an adult.

My name is Thomas Reid and I’m not only your pilot, but I’m traveling on this journey with you.

Now if you are new to blindness and have some reservations about this flight I can tell you the ground control has approved us for takeoff. the forecasts a mix of clear skies with some possible thunderstorms. We are expected to hit a bit of turbulence along the way, but don’t worry, I got you!

Wheels up baby, let’s go!

Audio: Reid My Mind Radio Intro

TR:

In 2017 & 18 , this podcast featured profiles of each of the Holman Prize winners. If you haven’t checked out those episodes I definitely want to encourage you to go back and give them a listen.

While I decided not to produce Holman prize episodes in 2019, early this year, I came across one of the 2019 winners, Dr. Mona Minkara. She’s a Bio Engineering professor at North Eastern University and the host and producer of Planes, Trains and Canes.

MM:

Which is a documentary series on YouTube showing me traveling to five different cities around the world and using only public transportation on my own.

[TR in conversation with MM:]

So the first show that I started to watch, that was your first one when you were headed out of Boston to and going to South Africa. I’m trying to figure out, what is this feeling that I have. I said wow, I think this is a little anxiety. I’m like wow, this is good though, this is really good.

My podcast, I really like to reach out to those who are adjusting to being Blind. That’s my target audience. And so I’m thinking they’re going to feel what I feel but for different reasons. I travel independently, not necessarily like you’re doing. I’m watching because I thought about doing some of the things you’re doing where you’re walking through an airport and not getting the guide and I’m like wow this is exactly how I thought I would do it but I wasn’t sure if there was a different way. People who are new to blindness need to see it because I think some of the stuff like the constant questioning that you’re doing, the constant asking and figuring it out, people need to know that that is ok. And I love that!
So that’s why I contacted you.

MM:

That so awesome to hear you say that, so awesome because I’m going to be honest with you, I feel like this project actually even pushed me even more than I normally push myself. I would have never risked on my own a two hour layover in Atlanta going by myself to the gate. I would have never risked that on my own. But I did for the sake of this project. Like uh, we’ll see what happens.

[TR in conversation with MM:]

Oh my god, I’m so glad you said that because people need to know that. people definitely need to know that

MM:

I completely agree. And then what’s the worst thing that could happen. I think what’s really important to discuss with something like this is being flexible. I was willing and ok and at peace with getting lost. I told myself Mona it’s ok if I get lost, it’s ok if it takes me like three hours … it’s ok!

[TR in conversation with MM:]

The other thing that I like about what you’re doing and we’re going to get in to the questions in just a second but…

TR:

Ok, fine, I was excited! I don’t usually include me geeking out over my guests but it definitely happens.
I knew this would be a comfortable conversation from the start.

[TR in conversation with MM:]

How are you doing Mona?

MM:

Good, how are you Thomas?

[TR in conversation with MM:]

Good, I’m good. Do you prefer Dr. Minkara? My bad.

MM:

No, no not at all. I’ve been told I probably should but no!

TR:

I’m not really into formalities, but I realize she earned that PHD and. When she’s on that campus, at those conferences put some respect on her name! Especially considering the early advice given to her mother when learning Mona would be Blind.

MM:

I had a doctor tell my mom that it wasn’t going to be worth spending a penny on my education. The bright future that I had was over with that sentence. But it wasn’t. (laughs) My life is great! (Laughs)

TR:

From an early age, Mona was interested in pursuing science and knew she wanted to be a professor.

Audio: Magic School Bus/Bill Nye

MM:

even though a lot of times I got people discouraging me because it wasn’t very practical for a Blind person to be a scientist.
I’m probably a scientist because of Magic School Bus and Bill Nye the Science Guy.

[TR in conversation with MM:]

Shout out to Bill Nye!

MM:

Yes! I am a PBS Kid!

Audio: PBS Kid

I think a part of who I am is I truly just follow my passion and I really value freedom and independence. That kind of carried over to Planes Trains & Canes because it was the ultimate test of my independence to allow me to have my freedom.

[TR in conversation with MM:]

What came first, was it the Holman prize or was this a dream to kind of do this?

MM:

That’s as good question a very good question. I was a judge for the first year of Holman Prize. I remember going out there and helping to judge the applicant pool and being taken by this concept. Even the story of James Holman and why these people were applying.

TR:

James Holman AKA, the Blind traveler, completed a series of solo journeys taking him to all inhabited continents.
The competition is sponsored by the San Francisco Lighthouse. $25,000
is given to each of the winners who are all legally blind and in their own way exhibit the adventurous spirit and attitude of James Holman

Following that first year, Mona had a thought.

MM:

I’d like to apply one day. What is it that I like to do? I realized, I really love public transportation.

Public transportation is a tool that is under appreciated by a lot of people but it’s a tool for me that really gives me freedom.

TR:

Currently living in Boston, the third city where she’s lived on her own as an adult. Each of these cities having a completely different public transportation system.

MM:

And then it just clicked, the concept for Planes Trains and Canes. Traveling on my own using public transportation.

TR:

In addition, she sought out cities on different continents which meant diverse cultures.

MM:

I didn’t have a deeply scientific method other than I also wanted to go to cities that I didn’t speak the language. It’s another barrier right. You feel like you might be more lost in an non English speaking place.
It was fascinating, you can see in my upcoming episode for Istanbul, you don’t really need the language. It was mind blowing for me to realize how easy it was to still navigate in a city like Istanbul or Tokyo.

[TR in conversation with MM:]

Laughs… It’s funny to hear the Scientist say that there was no scientific method about… (Laughing)

MM:

Laughs… I mean I knew London
[TR in conversation with MM:]

From the videos, it doesn’t seem like you spend that much time there. How much time do you spend in each place?

MM:

It was like four days.

[TR in conversation with MM:]

To go all the way to South Africa for 4 days is like damn!

MM:

I know, I had to squeeze them with my new job it was insane. I just started being a professor.

TR:

In addition to Istanbul & Tokyo that’s four days in Johannesburg, South Africa, London and Singapore.
While Planes Trains & Canes is all about independent travel, making the videos requires a team.

MM:

I remember thinking like 3 years ago that whoever I did this with I have to have a Videographer that was somebody I could easily travel with , a solid person. And somebody who’s really not going to break character.

NG:
Hello

[TR in conversation with NG:]

Hello Natalie?

NG:

Hi, Thomas, how are you?

[TR in conversation with NG:]

Good, how are you doing?

NG:

Good!

TR:

During my initial conversation with Mona, she suggested I speak to her entire team. And I did. First up Natalie Guzi.

NG:

I’m a Camera Woman for Planes Trains & Canes. I’m 23 and this was my first time doing anything camera work related.

[TR in conversation with NG:]

That was one of my first questions. (Laughs)

NG:

(Laughs)
Cool, ok!

[TR in conversation with NG:]

From my understanding you were a friend or a co-worker of Mona’s?

NG:

Co-worker turned really good friend

So, I went to school to be a technical writing major and I saw an open position. One of those pull tabs job posts with a number and email. Mona had put up signs for that. the interview went well I guess. Laughs…

TR:
In a way, working as an Access Assistant for Mona, helped Natalie develop one of the most important skills for the videographer role in Planes Trains & Canes.

[TR in conversation with NG:]

You ask any Blind person and they’re pretty much going to have a similar experience about being with someone who is sighted going somewhere and then having the person who is sighted being talked to as if the Blind person wasn’t there. When did you first experience that ?

NG:

The first time I experienced that was at a Chemistry conference, like an international conference where I was Mona’s access assistant. it must have been like just checking into a hotel. it’s under Mona’s name, Mona’s the PhD Scientist, I’m the 23 year old, but the person checking her in was looking at me.

TR:
This experience isn’t exclusive to those who are Blind. I hear the same from others with different disabilities too. There’s two components; first, directing the conversation away from the person with a disability and then there’s the gaze. Focusing the eye contact towards the non-disabled person.
Now, check the technique!

Audio: Musical intro…

NG:

How we work together with that kind of an issue is that I would just make eye contact with Mona so if you’re trying to look at me my gaze, then that’s going to get redirected to her. So they know where I’m looking and they should be looking. Sometimes people would pick up that and make that adjustment. Sometimes not. Or if we were talking and there was no counter between us then I would almost step over to their side so I was also facing Mona.

TR:

As the videographer, Natalie has to make sure it remains about Mona.

NG:

I tried to be as fly on the wall as possible. (Laughs) Which is a little bit hard. It wasn’t like an undercover operation. (Laughs) It was like someone following a blind woman with a camera. There were a lot of like stares and or questions about why the camera. people addressing me that I shouldn’t film even though Mona was the subject.

[TR in conversation with NG:]

They didn’t know that she was a part of it they thought you were just following her or something?

NG:

Yeh. They would like wave their hand in front of the camera.

[TR in conversation with MM:]

And then you would have to explain things?

NG:

It depended on the situation. That’s a great question too. I’m remembering a time when at a train station in Johannesburg. I was trying to capture footage of Mona buying her train ticket. One of the staff there came up and told me I couldn’t be filming although all I really wanted to do was film the interaction of Mona buying a ticket. No, no, like here’s the business card we’re filming a documentary. We’re not mapping out your train system for any weird purpose.

[TR in conversation with NG:]

That seems stressful to me. Can you talk about that.

NG:

Sure. By nature I lean towards wanting to make people happy and feel comfortable and welcomed. And when you’re walking around with a camera and people don’t know why that’s not really a possibility.
It’s difficult having those eyes and feeling those emotions from other people coming your way and having to remind yourself of the situation and the mission in that moment.

[TR in conversation with NG:]

Did that get easier?

NG:

We had the opportunity to go to lots of different countries and experience different cultures so it shifted every place that we went. Like people would in Istanbul, being like welcome and we love it and come to our store as we were walking by trying to get video.
In comparison, the experience in the London tube wasn’t as welcoming.

TR:

These are the things making Natalie the right person for the job.

NG:

A thick skin. You got to have that self-confidence and confidence in the mission and in the team too.
I think Mona and I’s relationship we just always have each other’s back. So I think that trust and that collaboration really was like the heart of the whole project that kept us going.

TR:

That trust could even mean stepping in and putting yourself at risk.

NG:

In Johannesburg, Mona was crossing the street and this car was taking a corner really fast. I had to jump into the street and like put my arms out. I just thought that car was going way too fast. I wanted them to see two people in the street at least like saying stop.

TR:

Mona and Natalie have the foundation making up a real team.

NG:

We kind of work together. She gave me the feedback on what worked in different situations. It was nice to have a collaborator with that too and just follow Mona’s lead.

TR:

After watching Planes Trains & Canes and then having the chance to speak with Mona, it’s apparent, what you see is what you get.

MM:

I’m pretty assertive I would say as a person, but I understand not everybody has that personality. When I’m tired and exhausted and getting off a 16 hour flight I’m not the sharpest. I’m just like excuse me (said lethargically) my energy’s low. I could be ignored more easily in that situation verses when I’m bright eyed and bushy tailed , I’m like hello!

[TR in conversation with MM:]

You’re quick not to give off any pity vibe or anything like that.

MM:

Yeh, cause I don’t want your pity. I want you to treat me like any other human being. I just happened to be Blind. Sighted people ask for directions all the time. All the time! Just adjust yourself , just a little bit by verbalizing your directions. I appreciate it, thank you!

Audio Bumper for editors

TR:

In order to win the prize enabling Mona to start her adventure she would have to first accumulate enough likes on her Holman prize entry video.

Contestant’s seeking the 25 G’s must first posts their videos to YouTube. The videos need to explain their ambition and cannot exceed 90 seconds. Mona and Natalie paired up to shoot the video with Natalie taking her first shot at editing. The video foreshadowed some of the reactions they’d eventually receive while traveling.
Audio: Clip Planes Trains & Canes Ambition Video

TR:

Winning the prize enabled them to purchase a camera and wireless
microphone.

Natalie and Mona learned more than expected from editing that first 90 second ambition video;

MM:

How much work editing would be.

[TR in conversation with MM:]

Chuckles…

TR:

Mona recruited Anxhela (Angela) Becolli
, her current Access Assistant at Northeastern.

MM:

She actually was the one who edited Johannesburg. She’s actually with me right now and…. Ok, I’m bringing her in…

AB:

I wasn’t expecting to be on the call…

[TR in conversation with AB:]

So that was your first shot at editing?

AB:

I had done editing a little bit before. In college I studied Photography in China and there I had done a few projects in videography but mainly photography. This was my first full paid project.

TR:

The thing about creating a documentary series such as Planes Trains & Canes is that you don’t know what your story is until it happens.

MM:

We recorded with no story line in mind. Recording as life unfolds in front of you and then extracting the story. So there’s an element of being able to story tell what you lived as opposed to the other way around – you are building the story and then you record the story.

You don’t know what life is going to give you.

As I was living it I remember taking mental notes like oh my God this would be really interesting to share with the audience.

TR:

Construction takes place in the editing room.

AB:

The main part is the story part. When Mona and Natalie give me the videos they also gave me this list of what they wanted the story to look like. What there idea was and what they wanted to portray to the viewers. What the most important parts were. What parts were light hearted. What parts were very specific to being Blind, to traveling and what needed to be kept in no matter what quality the video or audio was.

TR:

Mona is clearly directing all aspects of this project.

MM:

This part needs to be sped up and it’s kind of boring. I think we should add more of this part. I would say ok, let’s find music that represents the fact that I was feeling fearful or excited. I only used music connected to whatever city I was in. So all the music in the Johannesburg episode in part two, is from musicians from Johannesburg.

I personally have a certain vision for the vive and what was happening and Angela would work with me and hear what I have to say and implement it.

TR:

Creating content like this means investing real time.

AB:

If you have 40 hours of video you’re taking about 60 hours to watch the videos because you’re going to make notes, you’re going to cut things and you’ll re-watch those.

TR:

Angela was already committed to other projects so Mona had to find another editor.

Ted:

I’m Ted Jimenez, I’m the second editor put on the team to work on the new episodes; London, Istanbul, Singapore and Tokyo.

I am a self-taught editor. I worked with small independent studios before back in my home the Philippines I worked for States Sessions. It was a company that put on productions for Indy musicians in the Philippines. I did music videos for them. Promotional videos for them. Now I’m in Boston.

TR:

Where he too works at Northeastern making psychological self-help videos.

Mona decided early on that Planes Trains & Canes would not be a narrated style documentary.

Ted:

This is where Mona and I have conflicting views. I was going in with like my script saying oh Mona could you narrate this portion for us. And she is more of a fan of in the moment. I’m not going to pre-record a script that tells a story I’d rather the audience live through the story because it tells the Blind experience more naturally than if it was just said by her.

TR:

Show, not tell!

Mona’s voice over narrations that you hear in the series are sort of a means of accentuating specific moments.

Ted:

And it’s also to make it lighthearted.

MM:

I wanted comedy to be a main element. I want people to laugh while watching this because I want my message to really be heard and it’s going to be heard more through a comedic tone than through a lecturing serious tone.

TR:

Lighthearted may be the goal, but come on traveling Blind just like living Blind, you will have some encounters.

Audio: London…

[TR in conversation with MM:]

So you know where I’m going now. We’re going to London! You know the episode. (Laugh fades out) you were told that you had to register.

MM:

Yeh, yeh, yeh! I had no choice.

[TR in conversation with MM:]

So my anxiety woo, went through the roof! Mona, I’m going to tell you, I’m not that good at that situation. I’m from the Bronx Mona, I get a little aggressive. Ok! (Laugh fades out)

MM:

Laughing…

Dude, I’m going to tell you honestly, I held myself together because I didn’t even know if Natalie was videotaping me or not. But just in case she was I was like I need to make this point clear.

TR:

That point is at the core of this project; independence and freedom.

Ted:

I really like London as an example about how we kind of tell that story.

First, Mona getting off the plane into the subway. We foreshadow that Mona likes the choice of being able to ask for assistance or not ask for assistance.

In the second section of London where she’s coming from the airport to the Metro, that’s when we see that whole belief that she has of accepting or not accepting assistance.

TR:

You’re going to have to head on over to YouTube and check out the series to find out more.

Audio: Next time on Planes Trains & Canes…

TR:

Planes Trains & Canes is all about perspective.

It’s filmed from the perspective of a woman who is Blind and enjoys traveling independently and values her choice.

Along the way she interacts with people who may view the world differently.

[TR in conversation with MM:]

Wait up. You said he was nice?

MM:

I’m saying he was nice yes. (Laughing)

[TR in conversation with MM:]

Did you feel that way in the beginning? From the video, I took this guy like he was being condescending.

MM:

Oh, he was totally being condescending. I think it’s just the norm there to kind of treat people with disabilities like we are a bunch of 5 year olds. An underlying patronizing vibe!

TR:

As we each bring our individual perspective to the series, chances are there will be opposing points of view.

MM:

Did you see some of the comments that were on YouTube. Let me tell you. There was this one person who goes by SocietySister she wrote that I was selfish for not accepting help.

TR:

probably the same type of person to find the inclusion of Audio Description as a default in the series videos to be selfish.

MM:

I really wanted to make every video we create accessible to both Blind and Deaf individuals.

TR:

That’s a pretty inclusive approach giving a variety of viewers a chance to benefit from Mona’s experiences.

What did the production team take away from this experience? First, Natalie.

NG:

People are people wherever you go. They’re curious, they’ll probably want to know what’s going on if you walk into a new situation. maybe concerned if they see something new if they see something different. No matter where you go people do want to understand and to and connect. Also, trust and partnership with Mona . Just a profound sense of gratitude for working together for collaborating for trusting me to capture her experience and to be an observer.

TR:

Angela, who edited the first two episodes from Johannesburg, had hours of video to review. This gave her the chance to really see what Mona experiences.

AB:

I had a lot of moments where I went what I can’t, what why I can’t believe someone would do that. I can’t believe someone would say that. Why would someone treat you like that. Mona mentioned that Natalie was able to keep her calm, I’m the kind of person that would be like no what are you doing, you can’t do that. You can’t treat someone like that. Yeh, I’m not someone that would be able to keep her cool. (Laughs)

[TR in conversation with AB:]

Laughs.

TR:

I could see Angela and I teaming up in some bar fights together.

Ted, the editor of the remaining episodes, it should be noted is not only editing, but he’s doing all the Audio description and captioning. As someone making a career as an editor I had to ask him if he’d become a proponent for Audio Description.

[TR in conversation with Ted:]

You’re working with, I don’t know Steven Spielberg. You’re like Steven we got to put some Audio Description on this man… (Laughs)

Ted:

Laughing… Hey Steven! (Said in a serious tone)

Oh yes of course. Right now it’s normalized for me to kind of like say well what are the options for everybody if I’m viewing piece of media. Mona has made it specifically clear that the deadlines are the deadlines for everything. The captioning, the Audio Description. The video, It needs to be accessible to everyone.

TR:

Planes Trains & Canes was Mona’s way to not only highlight the benefits that public transportation affords her, but also show the ingenuity and abilities of those who are Blind.

Mona’s travels reveal lots of valuable lessons for those adjusting to blindness.

MM:

Even though I am 32 years old, I feel like I am more at peace with it then I have ever been. I don’t know if I want to share this with the world but yeh (laughing…)

[TR in conversation with MM:]

Well, let me just say something to you right now Again, it’s totally, totally fine if you don’t want to share.

MM:

Yeh!

[TR in conversation with MM:]

But that right there, again, think about it from the person who’s adjusting.

MM:

Yeh! No, I think it’s good I’ll explain why I say this.

[TR in conversation with MM:]

yeh!

MM:

I thought I was at peace. I used to take comments of you look sighted as compliments. I realize the detriment of that, only until like last year. Why should that be a compliment, you know? And I realized that I had built up all these techniques to almost compensate for blindness as opposed to work with it.

I had internalized this concept of blindness as weakness. I think it’s really important for Blind people to realize, we are inherently better problem solvers because we have to work around a lot of things. Blindness is not weakness. And to truly believe that I don’t know if I’m a hundred percent there.

TR:

I so respect and appreciate that honesty. It’s what I personally believe, adjusting to blindness is a continuous process. And if that’s ok for this Bio Engineer professor, well, I’m just saying, she’s doing something right.

[TR in conversation with MM:]

What have you taken away from this whole experience?

MM:

I think I pushed myself more than I would have for the sake of the videos. I learned that there’s a lot of good out there and there’s a lot of like negatives that we need to fix and that’s ok.

I don’t know how to explain this feeling. it’s almost an internal shift where I want to go to Mongolia, I can go to Mongolia. Where maybe before I’d be like well I really don’t know how I would go to Mongolia. I need to find somebody to go with me or whatever. And now it’s like this state of mind. If I want to go I can go!

[TR in conversation with MM:]

It sounds like, like you’re free.

MM:

Exactly! Exactly I obtained more freedom than I ever thought I could. And I think I have more freedom than the average person gets to mentally experience and what a privilege.

[TR in conversation with MM:]

And it’s attainable. You did it one specific way but that’s not the only way to attain that level of freedom and access.

MM:

Yeh. It’s like I learned it from my travels but I feel like it’s not about the travels, right. You can learn it in your own backyard. it’s about the mindset… you want it, go for it!

[TR in conversation with MM:]

Mona, this was better than I thought it was going to be. I thought it was going to be great, but this was even better. (Laughs…)

MM:

Laughs…

[TR in conversation with MM:]

One hundred percent!

Congratulations! I’m going to keep watching. I want to make sure other people watch. So you got a fan over here ok, I just want you to know that.
MM:

Thank you very much, I’m a fan of yours too!

TR:

Please welcome the latest members of the Reid My Mind Radio Family. Planes Trains & Canes, that’s Natalie Guzi, Angela Becolli , Benjamin Ted Jimenez and leading the way with her white cane in hand;

Audio: Put some respect on my name!

Dr. Mona Minkara!

[TR in conversation with MM:]

where can people check out Planes Trains & Canes and also where can they learn more about you Mona?

MM:

They can go to PlanesTrainsAndCanes.com or go to YouTube and type Planes Trains & Canes or you can go to MonaMinkara.com to learn more about me. If you want to learn about my research check out MinkaraCombineLab.com.

If you’re on Twitter follow @PlaneTrainCane (singular) and @Mona_Minkara

You can subscribe to Reid My Mind Radio wherever you get podcasts.
Transcripts, resources and more are over at ReidMyMind.com. And yes, that’s R to the E I D (Audio: “D, and that’s me in the place to be!” Slick Rick)

Like my last name

Audio: Reid My Mind Radio Outro

Peace!

Hide the transcript

TR:

What’s up Reid My Mind Radio Family?
It’s your brother T.Reid here bringing you another episode of the podcast. You know the one that brings you stories or profiles of compelling people impacted by blindness, low vision, disability.

Today’s episode is one of the occasional times when I share my own experience adjusting to blindness.

It’s one of those things I think many people who are blind deal with but for those of us who become blind as an adult, we really notice the difference. Well at least that’s my experience.

That’s up next!
Let’s go!

Audio: Reid My Mind Radio Theme

TR:

When we talk about the loss of access to things that impact a person’s quality of life following vision loss, transportation, information and career opportunities come to mind.

Here’s one we don’t often consider

Audio: “No Sleep” from “No Sleep til Brooklyn”, Beastie Boys

TR:

Sleep!

Audio: “Last Night, I didn’t Get to Sleep At All”, The Fifth Dimension

TR:

In 2004not too long after becoming Blind, I began having problems sleeping. Real problems. Not falling asleep but rather staying asleep at night. The consequence was I had problems staying awake during the day.

Usually late morning around 11 AM, my body would let me know it was preparing to go to sleep and there would be nothing I could do to stop it. I’d feel my temperature suddenly drop often to the point that I’d shake with chills. I’d struggle to make it to my bed where I’d often fall across rather than in.

It wasn’t just that I was too tired to get into the bed, but I didn’t plan to sleep for long.

Getting into the bed in the middle of the day well I thought that would make me be considered lazy and unproductive.

Prior to 2004 one of my motto’s was I’ll sleep when I’m dead!

Yeh, I was that guy!

Following years of my body being deprived of sleep, I honestly believed the lack of sleep would eventually kill me. I stopped going to sleep as often in the middle of the day. Not because I didn’t feel the need, nah, I had to stay awake when I returned to work.

Working from home, honestly, I could have rigged away to make sleep during the day possible. Occasionally I’d find myself waking up 20 – 30 minutes after putting my head down on my desk for what I thought was a few seconds.

This pattern continued for years.

Even though I was working from home, for me, my body’s need for sleep felt like laziness because I was uninformed.

Fortunately today we have a name for this; Non 24 Hour Sleep Wake Disorder or Non24 for short.

Basically… we all have a master body clock that gets reset every day by environmental light that’s detected by the eye and signals the brain There’s an access issue. For those who are totally Blind, the method to get the reset signal to the brain no longer exists.

Rather than getting into specific details of Non24, my purpose today is to share my experience specifically for those impacted. That’s the person who is now blind as well as their family members or those they live with who will inevitably be effected by the mood swings, the difficulty concentrating and the almost narcoleptic like sleep attacks.

I’m here for those who are constantly falling asleep during family get togethers, trips to the movies or even worse intimate conversations.

Someone who loses their sight for whatever reason, chances are they’re dealing with reduced independence, , possibly loss of a job and often even friends and loved ones who may no longer come around.

Audio: “Sweet Dreams” The Eurhythmics

TR:

I looked forward to sleep in the early days of my vision loss.

My dreams gave me access. I could freely walk without a cane or guide, easily finding people and things without a need for assistance and even regaining the anonymity I no longer seemed to have in public spaces during my time awake.

Sleep wasn’t about escaping my reality, rather it was a way to help process all of the things running through my mind. Waking up after a full night’s sleep is what helped me eventually realize I didn’t lose as much as I thought I did.

I’m no scientist, but I’d bet there’s a relationship between good sleep, hope, possibility and optimism.

I had several opportunities to talk with others about their experience with Non24. Those who were either congenitally Blind or Blind from a young age often just assumed their experience was the norm.

Several people who grew up attending schools for the Blind shared the experience of being chastise by teachers for falling asleep in class.

Others recalled how some of their most productive time growing up was during the night when they should have been asleep. These are probably some of the same people who today as adults feel their productivity is increased because they make good use of their time awake in the middle of the night while others are asleep.

I’ll never forget a young lady’s story of working at a call center where she would sometimes uncontrollably fall asleep only to have her supervisor whack her on the hand with a ruler or some object. She desperately wanted to keep her job, but her sleep cycle was off more than it was on during any given month.

It’s more than sleep!

Audio: “The lion Sleeps tonight”, Ladysmith Black Mombasa & The Mint Julips

I know people in my circle at times felt I had a bad attitude and probably attributed that to just me now being Blind and angry.

Yes, I was moody! I wasn’t getting the rest that my body desperately needed.

Blind people have been dealing with this for lifetimes.

I dealt with it for about 8 years and reached a point where I just knew I couldn’t take it anymore. I was literally losing time. Meaning I’d fall asleep and have no idea I fell asleep.

I wonder about that stereotype of the angry Blind guy. He just may be the sleepy Blind guy!

I’m not making any excuses for moodiness or bad behavior. We all have to be responsible, but for those going through it, Non 24 or any significant consistent sleep deprivation for any reason can feel like you no longer have any control.

Audio: Comedy Central Promo for Dave Chappelle Show

TR:
One night, I wanted to watch the Dave Chappelle show on Comedy Central. It was about 10:25 and the show aired at 10:30.

I sat on the edge of the bed in front of the television in a very awkward position. I knew if I laid in the bed and tried to wait for it I’d fall asleep with less than 5 minutes before the start of the show.

Audio: The Dave Chappelle Intro Music

TR:

Finally it was 10:29 and the Comedy Central voice over announced the show was up next.

Yes!

With only about 20 seconds left before the start of the show I thought, I made it.

There was no way I’d fall asleep during the show because I knew I’d be thoroughly entertained. As I sat in this awkward position I decided to stretch my back and quickly laid back on the bed during what I figured was the final commercial before the start of the show.

Audio: The Dave Chappelle Show begins in normal speed and is sped up.

TR:

I fell asleep in probably less than 20 seconds and remained knocked out for a half hour.
– Applause
– Dave Chappelle Show Closing…

TR:

The next thing I knew, I heard the closing of the show.

– No, No, No! TReid….

Audio: The Dave Chappelle Show closing harmonica!

TR:

Eventually, I’d come to find this story funny.

At the time though it really hurt because I realized I truly had no control over my sleep.

If it was just about missing a television show that wouldn’t bother me much but I was noticing small gaps in my memory. I was struggling to create and focus. The mood swings were impacting my family.

Finally, in 2012 I joined the Sleep Study that lead to the release of a drug to help those with Non24.

This episode isn’t about promoting the drug to help those with Non24.

However, my business manager says we are open to endorsement deals and a name and number can be inserted for future episodes if interested.

The business manager can be reached at reidmymindradio@gmail.com.

You may wonder what exactly prompted me to talk about this now. I you caught the timeline, I began experiencing Non24 in 2004 and said it was 8 years later when I reached that rock bottom.

Some changes in insurance this year and some good old fashioned bureaucracy left me without a way to manage my body’s Arcadian Rhythm.

I found myself once again experiencing some of the same problems. Yes, a bit of moodiness, drifting to sleep and some real brain fog that makes concentrating a real chore. I’m still finding my way out of that fog. Once again, I’m dreaming.

Audio: “Dream”, Pharaoh Monch

TR:

Finally,, let me wish all of you a very Happy Independence Day.

I’m not really talking about celebrating the Fourth of July and the signing of the Declaration of Independence. I’m talking about those who have experienced severe vision loss at any time. Those who experienced an acquired disability.

Those who find that they now have to do things differently, no matter whether that means using a form of technology, a technique or personal assistance.

I’m speaking to those who may have been born Blind or disabled and continue to assert their independence or work towards gaining more.

or came to a realization that their individual independence was reduced and decided to do something to gain or regain as much as possible.

Independence is defined by the individual. I can’t tell someone what should make them an independent person.

Whatever it is, sleep deprivation can negatively impact any activity and therefore can reduce a person’s independence.

If you find yourself dealing with this, I guess I just want you to know you are not alone. I know I felt that way at 1, 2 or 3 AM sitting up while it felt as though the rest of the world was asleep.

I’m not telling you what to do. Some people find over the counter remedies like Melatonin help them. Others alter their lifestyle and say it works for them. I have what works for me and I just hope you too can find something to work for you.

Again, I’m not recommending anything, but I am open to having a conversation that would include my specific recommendation or at least me sharing the name of what works for me. At least this is what my business manager recommends.

If you deal with Non24 or some other sleep disorder and have a specific method that works for you I’d love to hear about it. Let me tell you how to contact me… but before that a brief reminder there’s only one way to make sure you don’t miss an episode…

**

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You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

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