Archive for the ‘Retinoblastoma’ Category

They Call Me Marcy’s Son – A Eulogy

Wednesday, February 24th, 2021

Marcelina Reid, my mom, a tan skin woman with salt and pepper short hair standing in an off white and tan lace dress, poses in front of a stream with low green shrubs with a building reflected in the water.

My mother Marcelina passed away this month. I always wanted her to come on the podcast to have an open conversation around the topic of adult child/parent relationships after Vision Loss or disability. But Mom was from that generation that didn’t really get into those types of conversations, especially with their sons. I tried off microphone before and it wasn’t happening.

I felt the need to share some of these feelings and I know many of those adjusting to Vision Loss will see some of their own relationships in my experience with my mother.

My mother Marcy, the woman who raised me. My partner in silliness! probably my introduction to stories and the person who taught me how to find the good in bad situations. Yo soy El hijo de Marcy, Marcy’s son!



Show the transcript

— Soft ambient music begins


Hey there Reid My Mind Radio family! Much love to you all!

It’s your brother Thomas here on the check in…

If this is your first time joining the podcast, I’m the host and producer. Twice a month, we bring you compelling people impacted by all degrees of blindness. Every now and then I bring you stories from my own experience as a man adjusting to becoming Blind as an adult.

Today’s episode sort of falls into that last category. But I’m considering this a special episode.

Audio: Reid My Mind Theme Music


In the intro, I said we bring you this podcast twice a month. Well, yes there are times when that’s not true, usually though, I let you know when a brother needs a bit of a break.

This month, I had to change it up a bit.

My mom passed away and I didn’t want to release an episode that was actually ready to go.

I usually include some social media promoting of the episodes after each release, I didn’t want my public voice talking about the podcast while my private voice was grieving the loss of my mother.

On multiple occasions during the life span of this podcast, I wanted to have my mother on as a guest. My mother was very charismatic and actually quite funny. I know she would have been really entertaining, however, my real goal was to get some insight into the relationships between children who become Blind as adults and their parent or parents.

Unfortunately, my mom was from that generation that didn’t talk much about that sort of thing.

My mom as far as I know continued to blame herself for my having Retinoblastoma as a child. Me losing my left eye as a baby I know had a tremendous impact on how she treated me in comparison to my older siblings.

So when I had to tell my mom about the tumor found behind my right eye as an adult, that wasn’t easy for me to do and I know not easy for her to hear.

— Soft melancholy piano music begins —

“Put it in God’s hands!”, was her response. Five words I’d come to hear throughout my life. As an over analyzing, action oriented young man this phrase never really sat well with me. My interpretation was that it didn’t mean much if we ignored the conversation about what we should do about the problem.

Mom didn’t say much in this situation with her words, but I realized her actions actually completed what I needed to hear. She was always ready to do whatever was required. You need a ride, she’d drive. You need someone to watch the girls, she was on her way to the house. Quiede comer? Do you want to eat? If yes and actually even if you didn’t answer, she’d cook up something just in case.

— Soft melancholy music fades to an end —

Being Blind around my mom was personally really difficult for me. As a man, I want to be seen as a protector of my family. My immediate family, my wife and girls see me that way. Whatever is necessary they know I’ll do.

We know for example, driving, for those who lose their sight as adults is one of the most difficult things to give up.

We hear about the loss of independence. I stopped driving immediately when I knew I could endanger my family and others.

As a little kid, I remember watching my Dad and the older men in my family pack up the car, discuss the best route to take and then pilot us safely to our destination. Honestly, it wasn’t just men, my Mom and aunts often did a lot of driving. It’s something as a young boy to watch other older men that makes me see myself in that role someday. One of the reasons I probably loved taking road trips with my family before my vision loss.

I remember watching my older cousins chauffeur their mother and think that was the coolest thing ever. I loved how they’d get out the car with their car keys in hand, appearing almost like a body guard for their mother.

Being a protector of my mother could also mean just being there for her and helping her get things done.

A few months before my second Cancer diagnosis, my brother passed away. I got the call while at work. I stopped everything and went to my mother. I always kept a copy of keys to her apartment with me in case of an emergency.

I opened the door. I can still see the image of her sitting on a chair in the foyer just a few feet from that door to the apartment. She just sat there alone crying, looking as though she was waiting for someone to come through the door.

I felt proud to be that person for her. Arriving in time to take care of everything that she needed. Making the arrangements, answering questions, taking the phone calls. She later told me how much she appreciated me being there. Of course, I didn’t want my brother to leave before my mom, she already lost my oldest sister 25 years earlier. I was however very thankful I could make it easier for her.

Then just a few months later, it seemed like I’d never really have that chance to be seen the same by my mother.

After becoming Blind, the way she responded to me felt like she could never see me as that strong adult able to take care of her. Rather, she wanted to be the
care giver. Even though it wasn’t necessary.

“Quidau!”, she’d say over and over. Be careful as I get up from my seat. I’m fine Ma! I’d say in frustration. “He’s fine Ma!” my wife, Marlett would offer knowing I was growing more irritable. “Abuela” Daddy’s fine!” my oldest daughter would offer in my support.

This scenario would repeat as often as we were together. It took place in my own home, in her apartment – where I grew up. It took place in public which was ten times worse for me. to handle. It was as though not only could she not see me in a strong male role, but it felt like she pointed that out to anyone inevitably watching.

She tried to get better about that. I know Marlett tried to explain how that made me feel, but it was just who my mother was. I would always be her baby! That I can understand now with babies of my own, but it never really made it easier for me. I never again felt as though she saw me as someone who would protect her as she did me when growing up.

My sister Camille had the chance to be there for Mommy in the end. My mother lived with my sister and her family in what became her final years. Cam and the rest of the family did great in keeping mommy safe and healthy as she could be. She remained by her side through her last breath.

— Calm music begins which opens to a steady rhythm —

If it wasn’t going to be me there with her then I’m so thankful it was my sister.

During the wake we set aside some time to celebrate my mom’s life. We invited family and friends to share any memories or stories of my mom.

During this celebration, I had an opportunity to Eulogize my mom. I didn’t get to actually do it the way I think it should have been done so I’d like to share it here as a way to hopefully share some of that incredible light my mom shined on all who met and knew her.

Eres el hijo de Marcy

When we were growing up, random people in a pizza shop, supermarket perhaps or in front of some building in Co-op City in the Bronx would confirm that fact.

You’re Marcy’s son?

At that time, it meant I had to be careful.
I had to be on my best behavior because if my mother found out I was doing something I shouldn’t have been doing,
that would be bad enough. But finding out from a friend, I think that would have been way worse.

But being Marcy’s son, daughter or anything for that matter, to me means you benefit in some way from some of what she had.

You have to begin with strength.

That’s strength and courage to experience adversity and remain faithful in what you believe.
That’s what she did after burying two children way before their time. Plus losing her husband of 31 years.

It means, being stubborn. Incredibly stubborn.
But that’s conviction. Because everything she did was done with passion.

it’s an incredible sense of humor,

Honestly, some of that can be a bit crude and
while I don’t think she’d mind, I won’t go into specifics.

Mommy, could laugh at her own ways and flaws.
Never taking herself too seriously.

Mommy, was just so silly!
As little kids, you never knew when
you might turn the corner in the apartment and
there she was. Waiting on you.
Sometimes she was in one of those facial mud masks.
Other times she’d put on this orange alien looking mask.
She’d raise her hands in that supposed to be scary monster attacking pose while growling.

Even in more recent times, I know if
I ever needed anyone to act silly with, Mommy would never disappoint.

My Mom was a natural storyteller.

Those who had the chance to experience it definitely remember, Story time with Marcy…

It could have started with something simple like, let me tell you what happened today…

But, if you’re lucky, it began with a meal in her kitchen. That in itself is a gift!

If she was in the mood to share a story, alright, who am I kidding? it didn’t take much…

Mommy, tell them about the time… that could be anything.

I’m talking about either her childhood stories from Puerto Rico or
some of the early adventures in 1950’s New York City.

Mommy told stories in 3D.
She didn’t just tell you a story,
she brought you into it with sound effects she made up on the spot.

Panga na could be a crash, a punch…

She make these big , over exaggerated movements to illustrate or re-enact.

Sometimes, you might even be used as a prop.

Veng aki, as she pulls you out of your seat.

Of course, she had an action packed and dramatic tale.

you might wonder if she was embellishing.

That is until you experience something with her in life and you realize, oh no, those stories are true.

Marlett, Riana & Raven and Mommy were all hanging out at the mall.
I’d say about 8 or 10 years ago. Mommy had to be 75 or 77.

When they got home, the girls came and told me;
Daddy, Abuela got into a fight with this lady at Arthur Treachers.

That’s not news to me!

It wasn’t really for them either because they heard the stories of her past.
But now, after seeing her in action, there would never be any doubt as to the validity of those stories.

They believed her stories about her athletic prowess because at around 75 years old
they watched as she outskated a much younger woman at the roller rink. Because my mother was incredibly competitive.

But her best stories come out of her just being herself.

— Music ends —

When my sister Camille and I were young kids, Mommy
would tell us something then say, like a friend says and proceed to elaborate on something or explain

It was a very frequent thing.

Cammy and I would sort of look at one another …

Privately we’d wonder,
how many friends does mommy have?
Are they the same people always telling her these things?
Just something we wondered about for years.
It wasn’t until we were much older when we came to realize,
Wait, say that again, mommy,

Like a friend says

One more time

(exaggerated)Likay For instants

Mommy was saying for instance. All these years, it was just her accent that made us think she was saying like a friend says

I got into lots of trouble because of that accent.
Like the time she sent me to the store for Epson Salt and I came home with Eggs and Salt!

Teasing my mom and imitating her accent was and will always be one of the things that bring me joy.

As a kid, it got lots of laughs from her and my father so of course I continued.

Now, don’t get it twisted, my mom was to be taken seriously. She just had a cool way of combining the serious and the sweet.

As a child growing up dealing with lots of invasive doctor visits and exams under anesthesia, Mommy made them special. But first, she had to teach.

At each appointment from the time I was very young, it was my responsibility to sign myself in at the doctor’s office,
make sure no one was being seen before me,
even ask them to put the next set of drops in to assure everything stayed on schedule
I hated it because I was the only child doing that.
Isn’t this your job, I thought!

I realized later what she did and why.

She was a natural fighter and wanted to make sure her children were capable of standing up for themselves.
Showing me, not telling me how to do it!

But every visit was followed by either two hot dogs, a soft pretzel and a bottle of my favorite drink, Yoo Hoo, at that time.
On more special occasions, she’d take me to a restaurant. We shared memories of those times together later in life.

I looked forward to these appointments and
later learned how different that was from how other kids experienced these things.

Mommy, was an optimist.
She saw good in people but at the same time
she’s not going to fall for your nonsense.

— DJ scratch launches into a smooth beat! —

“So where you from?”


She was small, yet strong.

Definitely a bit heavy handed sometimes, but yet she had a delicate touch.
As a child it made everything better.
So much so that as an adult you still sought that comfort she could provide.

— “Marcy Son! Just thought I’d remind y’all!” Jay-Z lyric pans from left to right —


She was Mommy to my sister and I , Abuela to her grandchildren, Chela to her siblings and those who knew her back in the day.

If you knew her, I’m certain Marcy was someone special to you.
chances are you were impacted by her in some way.
even if you were the woman in Arthur Treacherss.

No seriously, on multiple occasions after the argument almost turned brawl, they’d see each other in the mall. And my mom would stare her down.

Esa vieja or the old lady as my mother called her, meanwhile I’m pretty sure my mother was older than her.

Today, something is and will forever be missing
not only in our families hearts
but honestly, the world feels a little emptier without her here.

There’s just places she’s supposed to be…
A family gathering, a rosary in her apartment, planning something here at Saint Michael’s .
That makes me very sad

But I’m so proud and happy that I will always be
El Hijo de Marcy, Marcy’s son!

— DJ scratch leads into “Marcy Son! Just thought I’d remind y’all” panned left —-

— DJ scratch leads into “Marcy Son” panned right—-

R E I D!

(D” and that’s me in the place to be, Slick Rick)


We Love You Mommy!

— Reid My Mind Radio outro

May you rest in peace!

Hide the transcript

Beyond the Sea with the Blind Captain

Wednesday, November 21st, 2018

Ahmet Ustenel paddling his kayak with scenic mountains off to the side.
Continuing our check in with the 2017 Holman Prize winners I speak with Ahmet Ustenel. When we last spoke with him he was preparing to kayak the Bosphorus Strait.

Take a listen to hear all about the technology developed to help him independently navigate his kayak from Turkey to Asia. We’ll learn about the pressures, lessons learned and hear from his team.

As you’ll hear in this episode, this trip represents much more than a kayak adventure… it goes beyond the sea!

When you’re done… Subscribe:
Apple Podcast, Google Podcast Sound Cloud, Stitcher, Tune In Radio or wherever you get podcasts.
Follow @tsreid on Twitter



Show the transcript


What’s up everyone?
I hope you all are doing well.

Hmm, I think I see a few new faces out there today?

Ok, this is pre-recorded radio so I can’t see faces.
Oh wait , I’m blind so I can’t see faces!

If you are new to the podcast, welcome.

Reid My Mind Radio is not only my space to demonstrate my corny humor, but it’s also a place to highlight topics and people I find compelling.
Occasionally, I share stories from my experience adjusting to blindness as an adult.

This is a welcoming space where I hope every episode provides a bit of thought, empowerment and a hint of entertainment.

Today, we’re continuing with our updates from the 2017 Holman Prize winners.
For the newbies, this is the point where I usually find some way to bring in my intro music…

Rather than doing that this week I thought I’d share a poem.
Now, I used to write rhymes as a teenage but these were raps for the lunch room.

But after a bit of inspiration, I figured, this is a safe space so I’ll share.

Ahem! (Clears throat)

Some states are red
Others are blue
Let’s all unite
over my theme music Boo!

Audio: Reid My Mind Radio Theme Music


Audio: Siri: “Facetime Audio”
Face time phone ringing…

[TR in conversation with Ahmet:]
Hey, Ahmet!

Hey Thomas!

Ahmet Ustenel, the Blind captain is back!
Here’s how he introduced himself in the original 2017 episode.

I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Man, yeh, wow!


While we share the same childhood eye cancer, our experiences were different. Ahmet lost his eyes around 3 years old. I lost one as a child and the other as an adult due to a second cancer.
When I brought you his story last year, he was in the early stages of preparing to Kayak the Bosphorous Straits.
He explains

##Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology is the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.


One piece of off the shelf technology or downloadable app wouldn’t do the full job for Ahmet’s project.

It requires customized devices.

Ahmet had to be more than head navigator of his kayak and provide the leadership enabling his team to accomplish the goal.

You plan everything.

The physical part – I have to go train and find people to train with and then I need to figure out my logistics. Like even simple things like how to carry my kayak. I have the technology part and I have to find people to work on those technologies.


In addition to all of that, this is an international project so there are additional logistics to coordinate.

But lots of things can force a change to any plan. Especially technology.

Something works great in a nice dry environment, but when you put it on a kayak (laughs) it gets Corroded and you need to eliminate maybe external batteries or external cables.

We needed to redesign. there was a lot of trial and errors until pretty much a couple of weeks before the crossing.


While managing all of the moving parts and people associated with this project, Ahmet continued working full time as a Special Education Teacher.

One of those people heavily invested in the project is Marty Stone.

An AT&T project manager who was creating a device to help Ahmet navigate his course.
I’m just one of those people who likes tinkering with things.


I caught up with Marty to hear his thoughts on the project.
Well you know things of course always go slowly. We nearly ran out of time but we got some really nice help from AT&T. What’s known as the Internet of Things Foundry. There’s several of them. This one was in Houston Texas.

Marty was actually in Turkey.

Now that’s a true indication of what this project means to Marty. After working throughout the year, traveling to Turkey to further show his support for Ahmet and the project.

I got to meet Ahmet for the first time. Quite an emotional experience!

Audio: Turkish Drum instrumental music


Let’s go back to this past July 2018 to
Ahmet along with his family and team in Turkey, preparing to set off on his journey across the Bosphorous.

Ahmet steers us through the big day.

First of all, my idea was crossing on the 22nd without telling the Coast Guard, without telling the Traffic Control.

[TR in conversation with Ahmet:]
Laughing… Editor’s note — in full support of this idea!

Like a pirate crossing.

[TR in conversation with Ahmet:]
Laughing… Yeah!

Quietly with just one support kayak in case something goes wrong my coach will be following me. But then the word got out and a lot of people heard about it . The Coast Guard heard, the traffic Control heard about it and then they said oh, no no no no you cannot do that.


The Coast Guard now aware of our blind pirate Ahmet’s intentions decided to slow traffic and give him a window of time to make the crossing – 90 minutes to be exact plus they changed the launch date to the 21st.


I said ok, you know we’re going to do it officially. That’s cool!

Then in the morning of crossing I was at the Marina just you know getting ready to prepare. We were having tea. We were not even close to our kayaks yet and I get a radio message.

“You have an hour to get ready and cross”
Audio: As if over walkie talkie radio

I was like woh! I was expecting an 11 o’clock start and I got the message at 9.


Not only rushing through the process of assembling the kayak, Ahmet had to speed up his mental preparation. And then there’s all of the technology.

Nothing ever happens as you expect or as you planned.

Marty should know, he’s a project manager after all.

Unfortunately, at the last minute we had a hardware failure. on the system.

It was the keypad . So he was no longer able to enter any commands.

We had recorded a trip the day before and we were getting ready for him to play that trip back and basically follow the course but we couldn’t get the system to take a command because the keyboard had shorted out.

Thankfully there was a backup system. Not what we worked so hard to have him use but it was a backup system that worked nonetheless. So very grateful for that.

We return to Ahmet in his kayak ready to set sail and cross over to Asia.


When I was on the water
I got another message

Note: Sounds like coming from Walkie talkie
“you only have an half hour to cross”

My original route was going to the other side, go under the bridge and make a U-turn and come back to the other side. So it would be like 90 minutes crossing both sides with some you know nice view and stuff, but when I heard I have only a half an hour I said ok you know can I even make it to the other side in half an hour. (Laughs)

Audio: Under Pressure, Queen


“Can I make it to the other side?”

Sounds like a simple question, but for Ahmet it symbolized the pressure that accumulated throughout the process.


I felt so much pressure.

People were focusing so much on the crossing, but actually it was a lot more than that. The background of the project was a yearlong even longer than that. All people see is can you do it or not.

So many people actually worked on this. It was a team effort a team project. So many layers and so many people and so many organizations were involved. And I felt like I really don’t want to disappoint people. People traveled from US. they came to Turkey to support. I had a lot of people in Turkey as well. If I fail was going to try it again anyway but I felt like if I failed all these people will be so disappointed or they will feel like they failed.


After a year of planning, now sitting in the kayak with all of the people there to support.

Even reporters and others from the media are there to find out whether he can make it to the other side.

Now, the extra pressure of only having a half hour to complete what he estimates is a 90 minute trip.

I start paddling…

Audio: sounds of oar and kayak increasing in speed…

I think that was the fastest I paddled in my life.

When I heard cheering on the other side …
Audio: Sound of crowd cheering

I was like woh that’s it. It was only like 20 minutes.

[TR in conversation with Ahmet:]



[TR in conversation with Ahmet:]
You were moving then,huh!

Yeh, I was moving man. Adrenaline rush.


He just about doubled his average kayaking speed from 4 or 5 miles an hour to about 7 or 8.

On top of that, he was dealing with boats getting too close taking pictures along with spying drones hovering above.


It was not a quiet and relaxing paddle. Laughs…

[TR in conversation with Ahmet:]



the Holman Prize is after all, all about adventure.
How much adventure is in everything going according to plan.

Yes, he completed the trip across the Bosphorous, but there are other measures of success. Like, the level of enthusiasm and commitment from his team. Like Marty Stone.


What an amazing person. (Sniffles ) Sorry, it’s hard not to be emotional

[TR in conversation with Marty:]
Nah, I get it.
When he (Ahmet )was going through the story of what happened throughout the year one of the things that stuck out to me was once it started he realized ok, wow, there’s other people involved. He was worried about you all his team. He didn’t want to let you all down. And I’m like Dude?… (Laughs)


[TR in conversation with Marty:]
He had a lot of pressure, just talking to him.

Oh! Oh no kidding!

He’s a super hero man he really is. And I’ve talked to him I said yes, crossing the Bosphorous going from Asia to Europe, wow, that was the main deal. But everything you’ve done to get to that point . You know you’re an amazing project manager I told him, you’re an amazing inspiration.

I know that word inspiration, for those in the disability community can be a sort of trigger.

Often misused towards a person with a disability.
As in exclaiming a blind person is amazing for completing the most trivial task.

These sort of praises are often more indicative of the other persons low expectations.

However , Marty and Ahmet have been working together for over a year. Marty’s compliments appear to be based on Ahmet’s actual work.

No shots fired!

Think of all the things you had to do in order to pull this off and then you pulled it off. I said you got some real important knowledge here that no one else has.


Along with improving his physical and technical kayaking skills, the most important success metrics are probably those things that Ahmet himself gained from the experience.

I learned about technology. I learned about myself.

[TR in conversation with Ahmet:]
What did you learn about yourself.?

When I have a goal, a big goal, I work better, I work hard. But if I just have some idea in my mind with no clear goals and objectives then I go off track.

I’m 38 years old I had a lot of ideas a lot of projects but sometimes I didn’t have enough motivation to start. But now I realize if I started then like 10 15 years ago most of them would be done by now and I felt like man you know I lost time but it’s not too late. I can still do stuff.

[TR in conversation with Ahmet:]
Yeah man, you’re young. I’m turning 50 so…
Editor’s note – birthday wishes welcomed as I already turned 50. 😉


Laughs. Yeah, we have time man!

[TR in conversation with Ahmet:]
Yeah, absolutely.


When you have something in your mind, don’t lose time. That’s my new approach. Just start somewhere and it’s going to happen.

[TR in conversation with Ahmet:]
Your skill set from this has probably greatly improved. Project management, you’re leading teams . Do you see any relationship to your career and then also I have a feeling you’re going to be a little rougher on your students. Laughs!


I always seen myself as a team member. Whenever I worked on a project I was a good team member, but I haven’t seen myself usually as a leader in the team. But after this project actually I was coordinating a lot of stuff. I was managing a lot of stuff and now I realize actually I might have some leadership skills as well. That’s a very important thing to know about yourself. I feel like I can take more responsibilities in the school district now or do some other projects with different organizations.

In terms of career, I think I will be teaching for a long time. I like teaching But in addition to teaching I might take some different roles in the district or in some different organizations in the Bay area.

Maybe I might do some recreational stuff with some blindness organizations.

In terms of being rough on the students I was always rough on students

[TR in conversation with Ahmet:]

Expectations are high. There’s no slacking for students.


After managing all of the moving parts of the project, the pressure and last minute changes I wondered if Ahmet had plans for more adventures.


It was a life changing event for me this year. I got the bug now.

[TR in conversation with Ahmet:]

I cannot stop now. I cannot stop. I have to think about my next project.


That bug apparently, is contagious. Ahmet says Marty too was bit!


He was excited as I was about everything. When we finished crossing he was like wait a minute, this is not the end . You know we will start new projects, we will keep working on this. So right after he came back to US he started working on a new device. laughs…

[TR in conversation with Ahmet:]
Laughs… Alright!


In fact, when I reached out to Marty he was working on hardware changes improving on the original design.

In my first conversation with Ahmet, prior to him taking on this adventure, I asked him why.


Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

He had a network of people, all in different locations, exchanging information with a shared goal.

Like teammate Marty Stone.

Audio: Inner City Blues, Marvin Gaye


Complete strangers can get together and do something amazing together. Volunteers, nobody got paid fr this. We put our heart and soul into this to help out another human being.

If human beings can do stuff like that, why is it that we still have people being separated at the border and we’re not able to treat our neighbors with respect?

Audio: Wind blowing…
The following audio clips taken from news items fade in from left and right.

a. The Caravan of South Americans seeking Asylum in the US
b. The over 13 pipe bombs sent to critics of 45
c. The 2 African Americans killed by a White Nationalist Terrorist in Kentucky
d. The 11 Jewish worshipers killed by a Nazi White Nationalist Terrorist in Pittsburgh.
– Wind blows


From a species standpoint, we’re capable of so much wonderful greatness and yet we’re also just able to be just really horrible nasty creatures.
I still marvel in the fact that a whole group of people who didn’t know each other pulled together and made something really beautiful happen for another person. And if we can do that, hell we should be able to straighten out our problems.

Audio: Makes me wanna holla, throw up both my hands”, Marvin Gaye

Ahmet’s journey offers a chance to represent more than its face value for anyone interested enough to see it.

It’s more than kayaking.

He created a proof of concept. providing the power for a self-navigating water vessel. Expanding on methods for blind and low vision people to independently participate in activities like kayaking, rowing, canoeing.

Now Ahmet wants to share all of his accumulated kayaking knowledge here in the states and Turkey.

Just introduce kayaking to blind people. Independent kayaking using the devices we made.
Just empowering people.

[TR in conversation with Ahmet:]

That sounds awesome!
Man, I salute you the Blind Captain…

Warmly laughing…

[TR in conversation with Ahmet:]
The Blind Captain, baby! Yeah, alright!
My man! Laughing…
I’m so happy for you!


How could you not be happy for someone who becomes empowered and wants to share that with others.

I’m reminded of our first conversation in 2017 when Ahmet described his relationship with the water.


I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free.

Audio: A very calm kayak moving through the water.
Fades into sounds of 45 at a rally, news commentators recapping the deaths and current events.

Fades back to the peaceful sounds of the kayak on the water.

Free! That does sound good!

Ahmet’s planning to take a month and camp and kayak the coast of Turkey’s Black Sea.

He’s not sailing off into the sunset just yet.
He and his journey are part of a documentary currently in production. And he knows he has to come back to the family – the Reid My Mind Radio family and let us know more when the time is right.

You know the time is always right to subscribe to this podcast. You can do that on Apple Podcast, Google Podcast, Sound Cloud, Stitcher, Tune In Radio or your favorite podcast app. All you have to do is search for Reid My Mind Radio. That’s R to the E I D!

Don’t miss the next episode where we catch up with our favorite Social Entrepreneur, Bee Keeper and honey farmer Mr. Ojok Simon.

Until next time where I once again strive to answer the question that started this podcast in 2014.

Can you do it or not!

Audio: Reid My Mind Radio Outro


Hide the transcript

Reid My Mind Radio: Get On Board With The Blind Captain

Wednesday, September 27th, 2017

Ahmet in his kayak on a blue sea with a beautiful beach in the background.

Holman Prize winner Ahmet Ustunel says the water is his “happy place.” Hear all about his plans to be the first blind person to independently kayak from Europe to Asia… alone!

Plus the water being my Happy place means Ahmet and I have at least two things in common.



Show the transcript


What’s up RMMRadio Family…

If you’ve been here before, welcome back! If you’re a new jack, come on in…
take your shoes off if you like, it’s
not mandatory in my house, but I do want you to be comfortable.

Let’s get it! All aboard!
All Aboard!

[Audio: Ship Horn]
[Reid My Mind Theme]

In this second of our three part series, we’ll meet another winner of the Holman Prize.

The prize is named in honor of James Holman.
Known as the Blind Traveler, Holman completed a series of solo journeys taking him to all inhabited continents.

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

Ahmet Ustunel Our featured Holman Prize winner today like James Holman, is quite comfortable on the water.

I spoke to him via Facebook Audio while he was at home in San Francisco.

I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Man, yeh, wow!


Retinoblastoma, is a rare childhood eye cancer that usually affects children before the age of years old.
By rare we’re talking about seven thousand children a year.

In the US and other developed nations the survivor rate is
around 90 percent with significant children losing sight.
In under developed nations, the rates are reversed and children’s lives are lost.

One common sign possibly indicating Retinoblastoma is a
white reflection in a child’s eye resembling that of a cat’s eye reflecting light.

Early diagnosis and treatment are key to saving both lives and sight.

By the time Ahmet’s cancer was detected, doctors in Turkey
were out of options to help.


One of my relatives was in Germany working at a children’s hospital as a janitor so my Gran Ma took me there and they treated me there with radiation an enucleation.


Enucleation or the surgical removal of Both his eyes, Ahmet returned home to Turkey now as a blind child.

I was lucky in terms of having really supportive people in my family. I grew up in a really big family. Everybody had a different approach in terms of blindness.

I was the only blind person in the family and even in the town I guess. I didn’t know any other blind person.

[TR in conversation with Ahmet]

Wow! How big of a town are you talking about?

Maybe like ten fifteen thousand people.
Then I moved to Istanbul which is like fifteen sixteen million people and that actually changed my life.


Ahmet was aware of the contrasting dynamics in his family as it pertained to his blindness. Some were over protective while others wanted to help him do the things other little boys were doing.

Ride a bike, tie hooks on a fishing line… avoid Sting Rays when you are swimming.


These early lessons in the ability to make something accessible played a role in his education and future.

After not being accepted in a mainstream school , Ahmet watched as his peers went to school at around 6 years old.

Moving to Istanbul his parents tried to enroll him in the only school for blind children. With a waiting list Ahmet wouldn’t begin until he was 8 years old.

Attending school during the week and returning home on weekends, Ahmet credits this school with teaching him valuable life skills.
After 5th grade he would attend a mainstream school.

They send you back to mainstream school with no support. So you go back to school with no books and no teachers for the blind.

I was the first blind student in the school. I had to prove myself as a blind person.


At an early age, Ahmet took his education and future into his own hands.

I was walking around with my Walkman and asking everybody you know, can you read me a page or two.

[TR in conversation with Ahmet]

So you were basically learning to advocate for yourself at that young age?


Oh yeah I mean absolutely I mean there was nobody to advocate for me.
I could choose to sit around and do nothing you know get a C and pass, but if I really do well then people and teachers and you know the principal will understand that I can do stuff and they will let me stay. And if I cannot do it
I will just withdrawal myself.

Ahmet when on to not only prove himself to the administration but gain the confidence in his own abilities.

He studied Psychology in college where he met his wife, a US exchange student.

But his early life exposed him to more than academics


When I was in high school my school campus was right on the water, you can literally jump into the water from the campus.

[TR in conversation with Ahmet]

So is that where the kayaking came in, from high school.

No actually I did a lot of you know water related activities since my childhood as I grew up by Black Sea.

When I was in college I use to go rowing and stuff, but I haven’t started kayaking until I came here.

A Kayak is a very narrow boat like vessel. You steer and move the kayak with a paddle that has a blade on each end. They average about 25 to 35 inches wide and 12 to 19 feet in length.


So let’s say you have a kayak nineteen foot long and twenty eight inch wide. You can go really fast but it will be a little tippy.

If it is twelve feet long and thirty five inches wide it will be really stable but you will go half as fast as the nineteen foot one.

It’s made of either corrugated plastic or fiber glass, there are some inflatable models.
So you sit in it. And you’re like really close to the water if you put
your hand your right there the water is right there. So you’re like maybe four inches above the water.

And you have a spray skirt which covers the kayak. So if you have a splash water doesn’t get in and if you flip over you are upside down but know water gets in.
So you have to pull the skirt off the kayak and get out of the kayak and flip it over and get back in. Or you can do the special row it’s called Eskimo row. Without pulling the skirt off you can flip the kayak back and keep paddling.

If you go paddling in cold water like San Francisco the water temperature goes below fifty degrees most of the time. So you don’t want to stay in that water more than 15 minutes. If you stay more than 15 minutes they say Hypothermia kicks in.


So what does Kayaking have to do with the Holman Prize?

[Audio from Ahmet’s Ambition]

You’re listening to Ahmet’s Holman Prize Ambition video where he explains what he would do with the 25 grand.

[Ahmet in Video……]

I have been kayaking for about 10 years and I always wanted to be able to paddle independently. If I win the Holman Prize I will equip my kayak with high and low tech devices that will enable me to navigate the kayak by myself.

His mission…

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

You heard him correctly…
[Audio: Tape rewinding ]

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

Exactly what is required for someone to non visually, independently navigate their way through the Bosporus Straits from Europe to Asia?

Let’s start with the Kayak

The kayak I’m going to use has kind of like fins going down from the bottom of the kayak kind of like penguin feet. And so you can pedal with your feet if you want or you can just do a classical paddle strokes.

I want to keep my hands free because I’m going to use whole bunch of different technologies.


No surprise here the technology includes an iPhone.

I’m going to use a G.P.S. app – Ariadni G.P.S.

You can mark way points and it will let you know when you get close to that way point.

It also has a compass with degrees and tell you how far you are from your way points. And then I have a talking audible compass. Similar thing it will tell you degrees and you will set you course before you start and it will tell you if you are off course.

[TR in conversation with Ahmet]
and you will South your course before you start and it will tell you the field

Is that a separate device or is that an app?


It’s a separate devise.

I will also have parking sensors or security cameras sensors.

[TR in conversation with Ahmet]
Probably the same thing they use when the cars park themselves… right?


Right, right right! You know when you’re backing out so if you are about to hit something it beeps.

I have a depth whisperer.

[TR in conversation with Ahmet]

D E P T H?.


[TR in conversation with Ahmet]

Ok at first I thought you said death (laughs) I was like I don’t like that one!

Laughs… I hope not!

It tell you if there’s shallow water underneath the kayak. If you are about to hit a rock or something .


Ahmet does have to prepare for all scenarios.

There’s redundancy in his technology so if one device fails another can provide the same or just as useful information.

Not all the technology is off the shelf. While searching for the best methods for non-visually navigating his way through the water Ahmet
came across Marty Stone.

Marty is an AT&T I.T. Project Manager by day and after hours…


I’m just one of those people that like to tinker with things.

Marty created a device that simply put:

It was developed to allow blind people to get a kayak and race it in a straight line and then turn around and come back.


Reading about this device, Ahmet reached out to Marty who decided to expand on the original design.

Now we’re working on something that not only includes a compass but gyroscopes, accelerometers, and three different axis.

So you get a lot better information as far as movement and heading. We’ve got a G.P.S. module that’s it’s married to along with Bluetooth. That’s going to be interfaced with a device Ahmet will be able to wear on his life vest that will have some buttons that either he can program in some coordinates or commands to the system that he’ll just wear a headset and it’ll talk to him.
It’ll tell him that in order to get from where he is to his next way point he needs to row in a certain heading direction. And if he gets off course the system will tell him to paddle more on the left or paddle more on the right. And when he gets to a way point it will let him know and then he needs to change his heading to another course direction and then it’ll tell him that.

With both equipment and technology accounted for, Ahmet needs a few more things to be fully prepared to reach his goal; first a plan..

Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

These tankers are the size of multiple football fields. A small kayak would probably go unnoticed anywhere near such a large vessel. And getting out of the way even if you could see it would be virtually impossible.

I don’t want to take my chance with those guys!

The Bosporus being such a very narrow waterway. Authorities closely control the traffic flow in each direction.


I will listen to the traffic channel. Usually they have half an hour or forty-five minute break in between and I will do my crossing during that time.

[TR in conversation with Ahmet]
Do you have to schedule this?


Well, I talked to the Coast Guard in Turkey and they .. first they didn’t believe that I could do it and I showed my videos to them and they said ok do whatever, we don’t take any responsibility.
(Ahmet and TR Laugh)

There will be a really fast boat watching me from the shore. If something goes wrong they will come and pick me up in like few minutes.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology if the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.

[TR in conversation with Ahmet]

Why are you doing this man?


I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free. I grew up in a fishing boat when I was a kid. My father was a fisherman. In the fishing boats I used to ask my Dad, you know can I steer the boat. he said yeh, you know, it’s water there’s nothing around you, it’s like miles and miles of open water. I used to take the steering wheel and just feel like I was the captain of the boat. And I was imagining like how can do something like this as a blind person as a blind kid. I always wanted to do something water related but my option were very limited in college.
If I grew up in the US I would have probably do something like marine biology.

I love what I am doing right now, I’m teaching special ed. It was always somewhere in my mind to do something water related and being able to do it independently. I have been thinking about it for a long time and I thought you know, it’s doable if I have the financial support I can do it.

I believe him. And I will admit it, partially because he is a fellow Retinoblastoma Survivor but mainly because he began as a child.
Think about the early lessons from his family helping him adapt all the different activities so he could participate…

[Audio in flashback Ahmet]

Ride a bike… tie hooks on a fishing line… avoid Sting Rays when you are swimming.

Then becoming his own advocate at such a young age and showing such determination to get an education.

I imagine these are some of the qualities seen by the Holman Prize judges who awarded Ahmet the 25 thousand dollars to complete his objective.


You know, I’m not saving the world or I’m not creating job opportunities or changing the lives of blind people , but I think I’m doing something cool!

At least it might encourage younger kids to try new things. I see that my students, high school kids, they get discouraged in terms of finding alternative ways… I think it will help.

Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

[TR in conversation with Ahmet]

It’s cool, you focus on kids, you’re a teacher so that’s what you do, but for anyone, you’re pursuing your passion and that’s something that we forget in life. To be able to say you’re going to go and pursue your passion and have a dream and do it that is a universal thing that goes way beyond any sort of disability. There are people who are perfectly sighted, physical abled who are not pursuing their passion and we can all learn from that.

Absolutely, yeh, I mean you know, it’s not a blind or sighted thing. It’s just I think being adventurous and take a risk take a chance.


That’s probably the final ingredient necessary to complete this mission. courage!

As a young boy on the fishing boat with his Dad, Ahmet dreamt of becoming the captain. It takes real courage to go for your dreams. I’d say Ahmet’s been captain of his ship for quite some time.

If you’re interested in wishing Ahmet safe travels or want to follow his progress, go and Like his Facebook page; Ahmet The Blind captain.

I’m Thomas Reid for Gatewave Radio,
[Audio repurposed: Ahmet ” do whatever, we don’t take any responsibility! ]

audio for independent living!

[Audio: Grand Funk Railroad… The Captain]

Being affected by the lack of accessibility is frustrating. Especially when you know the so called limitation isn’t real.

It could be a website or program that doesn’t work with a screen reader. That was a choice. Probably not an intentional one, but if made aware of the problem and
a solution isn’t sought well, that’s intentional.

Companies usually fall back on the cost and yes there could be a cost to updating a product, but there’s no real cost to changing how we think and design for the future.

Inaccessibility is frustrating when you know that the reason for technology is to make our lives better.

That was one of the reasons I wanted to reach out to Marty Stone, the developer creating an enhanced device to help Ahmet stay the course.

You can never accuse me of being an optimistic person I’m afraid, but I do hope that we can save the world with science, I really do. The world needs a lot of help and a lot of people really don’t trust science or scientist it’s kind of shameful.

[TR in conversation with Marty]
This is what technology is all about.

Helping people…

[TR in conversation with Marty]


Absolutely, the stuff I do for AT&T is great and all that but doing this other stuff… this is the best stuff in the world. Volunteering and doing this other work. Taking some of that Geek ology and helping other people’s lives.. make them better. Man that’s just the dandiest thing in the world.

We need more of a bridge between the users of technology and the programmers, engineers, scientists … nerds.
It’s cool to be a nerd now, yeh…. laughs.


The opportunity to profile Ahmet and his story came at the right time for me personally.
For the past few years, September has been a pretty busy time here on the Reid Compound.
As a survivor and a family impacted by Retinoblastoma, my family and I have spent the past few years telling stories to bring awareness of this childhood cancer.

September is childhood cancer awareness month. This year unfortunately we couldn’t produce the stories so being able to bring you Ahmet and drop a little info about this eye cancer means a lot to me personally.

In fact, I’d encourage you to check out some of the prior videos we have produced and see how the cancer impacted their lives. While these are videos the visuals included are enhancements, the story is told verbally.
I’ll have some links on this episode’s post on

I’m always hopeful that a story like Ahmet’s when presented in the mainstream media is done the right way. By that I mean, find and convey his message to the wider audience. In addition to the accessibility and self-advocacy I’m always personally encouraged when I see others going for their dream.

Ahmet was already preparing for the dream. He just needed the funding. His fortune, the San Francisco Lighthouse created the opportunity. Ahmet was prepared. Some say that’s the definition of luck… being prepared for opportunity

That’s another take away for me, be prepared for that opportunity. Begin moving towards your dream.

I hope the Holman Prize winners; Ahmet and Penny are encouraging you the listener to go for your dream if you’re not already.

I hope they’re encouraging you to subscribe to this podcast just
about anywhere podcasts are distributed… Apple Podcast, Google Play, Stitcher, Tune In and Sound Cloud

The world is going to be buzzing with this next episode, featuring
the final Holman Prize winner. Don’t miss it.


Hide the transcript

PennyPushUps is now The RAE of Hope

Saturday, September 10th, 2016

PennyPushUps since 2013 has been my family’s awareness and fundraising campaign to spread information about Retinoblastoma, the childhood eye cancer that is responsible for my loss of both my eyes.

As the parent of a RB survivor it seemed right to try and do something to spread awareness.


The original idea was pretty straight forward; I’ll complete 100 push-ups a day and you sponsor me like a walk-a-thon just 1 cent per push-up… do the math!


The campaign turned into us sharing our story as well as others impacted by the cancer. Probably not a shock considering I enjoy telling people’s stories. The shock was I thought I could easily do this on video. Fortunately, I wasn’t 100 percent wrong. (Non visual video editing is possible… I do it!) Even more fortunately, my wife thought she could do a better job at the video production. She was right and she began to earn her keep and her name… Super Producer Marley Marl now formally known as Super Producer Marlett!


It became apparent that people weren’t really interested in my push-ups. One of the comments on the videos went something like; “Really interesting and important but why is there a guy doing push-ups.” LOL! I guess they didn’t listen to the introduction which summarized everything I just said about the campaign.


Logo for The RAE of Hope - a beam of light shining on to the earth from space

Focusing on raising awareness & empowering others while raising funds for World Eye Cancer Hope the name sort of wrote itself when we let the universe take over… The RAE of Hope, “Shining a light on a childhood eye cancer”.


We just finished airing our first full week of videos. We post them to our Facebook page “The RAE of Hope” and via YouTube.


I would love for you to come on over and “Like” our FB page or follow us on twitter @TheRAEofHope. The stories this year feature a bit more in the way of video production but the full story is told via audio. In fact, this year we incorporated closed captions available via YouTube, so we’re fully accessible – the way it should be!


Below is our playlist of all our videos so if this works properly you could pretty much bookmark this post and watch the latest video as we move through the month. We post new videos every Monday, Wednesday and Friday.


Tell a friend and help us spread the word about Childhood Cancer it can truly save a life and sight!


Reid My Mind Radio: Cradle – The Cancer Detecting Smart Phone App

Wednesday, February 24th, 2016

“You make something, it works very well and then you just give it away, as quickly as possible”

– Bryan Shaw


Bryan Shaw, after watching his child survive Retinoblastoma or Eye Cancer, develops an app that is already saving lives and sight in children.


In this piece for Gatewave Radio and even more included on the RMM Radio version, you will hear all about this Professor’s story and how personal tragedy led to a life changing app.


Get the APP on ITunes

Get the App on Google Play


Play the story!




“Cheap, functional, reliable things unleash the creativity of people who then build stuff that you could not imagine” – George Whitesides


George Whitesides – TED Talk


For more on the white eye…Know the Glow

Learn more about those impacted by Retinoblastoma: