(gentle music)
Welcome to Hadley Presents.
I'm your host, Ricky Enger, inviting you to sit back, relax,
and enjoy a conversation with the experts.
In this episode, director of community, Marc Arneson,
interviews Hadley advisor, Eddie Becerra,
to share his story of vision loss.
Welcome to the show, both of you.
Thanks, Ricky. Happy to be here.
Thank you.
So glad to have you both.
So I introduced Eddie as a Hadley advisor,
and what that is is probably not immediately apparent.
I know that Marc, you've been on the program
a couple of times before, and you as director of community
have a chance to do a lot of support groups
as well as help select and interact
with our Hadley advisors.
So these are people that get to share with us
how they're feeling about what it is that we're doing,
and they can tell us where we're missing the mark
a little bit, and they can also say,
"You know, wouldn't it be great
if you guys created a workshop on such and such?"
And so we love our Hadley advisors,
and it's really cool to have one of them on the show.
Marc and Eddie, I think that's how you guys met, right?
Yeah, that's exactly right, Ricky.
I think we were trying to figure out a workshop
that we wanted to look at.
We weren't quite sure if it was moving
in the right direction, and so I reached out to Eddie,
and he gave us some amazing feedback,
some great insight just to make sure
that we were kind of moving in the right direction.
So yeah, Eddie and I got to spend some time together
looking at a new workshop we were trying to put together.
That's awesome and turns out
that through that interaction,
you realized that Eddie has a pretty cool story actually,
and that's what we want to dive into today.
So Marc, I know you have a lot of really great questions,
and Eddie, we've been talking predominantly so far,
and so that's going to change now
'cause you get to share your story
and be a major part of the conversation now too.
So, Marc, I'm gonna turn it over to you.
I know you've got some great questions.
Like Ricky said, you did such a great job
helping us out
with some of the things that we're trying to do,
and even more so, I just loved hearing your story,
your kind of perspective and your vulnerability
and just sharing kind of what life is like
and what's going on.
So, Eddie, do you mind sharing with me
what your diagnosis is and what your vision
is currently like?
So I guess my sight loss story
started about four years ago.
One morning, I woke up, I was getting ready for work,
and I dropped something on the floor, and as I bent over,
I noticed I started seeing like a reddish blur
in my left eye.
So of course, that scared the bejeebies outta me,
and I didn't know what was going on,
but it was significant enough to where it clouded my vision.
When you lose sight in one eye, what do you do?
(laughing) You jump in your car
and you drive to the emergency room.
Once I got there and they looked me over,
they saw that I had a retina detached.
I had to have emergency surgery, and then after that,
you know, of course I did the meetings
and the consulting with the ophthalmologist,
and of course, it was a retina detachment,
and it was due to diabetic retinopathy.
Once that was taken care of,
they started looking at my right eye,
and they noticed that I had a lot of broken blood vessels
behind the eye.
Even though I could see fairly well,
they still wanted to get in there,
wanted to cauterize the bleeds that were in my eyes.
And after talking with the ophthalmologist, you know,
I was trying to get an idea of how bad it was
in the right eye, because at that point,
we pretty much knew I wasn't going to get sight back
in my left eye.
He says it was probably one of the worst cases
and the most number of broken blood vessels he had seen
in a long time.
We started laser treatments and such,
and at this point, now I am completely blind.
I don't have no vision in either eyes,
no light perception, and I've been totally blind now
for I wanna say pretty close to two, two and a half years.
Wow. What an experience.
You know, Eddie, I hear a lotta people,
they go into these initial appointments
and they're spending time with their doctor
and people have different experiences
when they're leaving the doctor's office,
particularly like after an initial diagnosis
or something like that, maybe before some of
the actual surgeries happen.
Do you remember some of those experiences,
like with your doctors and what that was like?
I guess the whole process was just a long
journey of hope.
You know, every time I would go in,
"Well, you have this issue and this issue,
and we're going to have to do another surgery,"
but with that being said,
they always used the term "should".
You know, "After this procedure,
you should retain some of your eyesight
and maybe even regain some of it."
And I just remember every surgery,
it was always this big buildup and then this big let down
because every surgery afterwards, just the sight,
it just got worse and worse and worse,
and that went on for almost a good 18 months.
Someone can only take that sense of hope
and then the let down so many times,
and it just really starts wearing on you,
and it's kind of a sad thing,
but the last thing I ever saw was my last surgery,
and the last thing I saw was the gentleman,
the ophthalmologist who gave me more false hope.
"When you come out of the surgery,
you'll be wearing a patch for about a week,
but then after this, you," once again,
"should regain some of your eyesight back."
Well, he was the last person I ever saw.
After that last surgery, they were pretty much done with me.
So the adjustment, you know,
an 18-month period, I think you had said,
when you were first driving to the emergency room
until the surgeries were done,
what an adjustment you've had to kind of,
adjustment you've taken over these last 18 months.
Like, what were some of the biggest challenges
you think you faced during that 18-month period?
Like I said, the back and forth
of hope and disappointment,
but once I knew that I was never gonna see again,
I'll be totally honest, Marc, I was quite devastated.
You know, I didn't know nothing about
sight loss or blindness.
I surely didn't know anybody else who was blind,
and just judging from my initial experience,
I thought pretty much life is over.
Before I lost my sight, you know,
I was very passionate, very busy,
just always on-the-go kind of person, you know?
I always had to be doing stuff.
I had a lotta hobbies and very social person,
and yeah, and it all came to a screeching halt.
So basically my life turned from being this outgoing,
straightforward person to just sitting around
and not doing nothing.
It was just horrible. It was a horrible experience.
And it changed me, it radically changed me,
and of course, the blindness radically changed my life.
And I don't want to sound too melodramatic,
but I just pretty much thought life was over.
Well, and so Eddie, you know,
I've gotten to know you a little bit better and, you know,
I didn't know you when you first started losing your vision.
I've gotten to know you since then
and I know that you're a very outgoing,
(laughing) very motivated guy.
So what kind of inspired you to overcome
some of these challenges that you were facing?
To be honest, I don't think it was any one
point in time
that inspired me.
I think it was more along the lines of anger
and disappointment in myself, because like I said,
I've always been this outgoing, very resilient person.
I'm very adaptable.
Like I said, it just changed me.
I just, I wasn't that person anymore.
I spent almost six months just sitting
on the couch every day.
I had no reason to wake up,
and then I don't know what point in time per se,
but I just remember waking up one morning
and I was just so mad at myself.
I was just so mad and disappointed,
and I just kinda thought to myself, you know,
"You big baby. Here you are.
You're sitting on the couch, moping and crying,
feeling sorry for yourself.
This is not you.
Pull up the bootstraps and let's do something about this."
So once I decided that I was going to do something about it,
I didn't know what to do.
There has to be something to do, I can do,
but what, you know?
When I left the ophthalmologist's office
for the last time, it was basically,
"Well, we did all we could do.
I am sorry. Have a good life."
And he was off to the next patient.
So there I am, totally blind,
sitting in this doctor's office.
You would think of any place, a doctor's office,
if they knew you were going to be blind
for the rest of your life,
they would give you some kind of resources,
some information, a handout, a phone number,
you know, something, but they didn't.
Now with that being said, I am not going to say
that the level of care I got was substandard.
This was one of the best eye clinics in the country.
That's not their specialty.
They don't deal with bedside manner very well,
and I understand that's the nature of the business,
but with that being said,
there's other people in that doctor's office.
Somebody in that place could be in charge of
pulling somebody aside and giving them some information
and some phone numbers, some point of contact,
something, and that never happened.
I ended up calling my friend,
and he came over and we got on my computer,
and we started looking for things,
and it was just a basic search, you know?
I think we punched in something like
"resources for blind folks".
With that, one of the first returns
was a facility called Outlook Nebraska,
where they have employment opportunities for blind folks,
and they also do extracurricular activities
with blind and low-vision people.
So we ended up calling that facility,
and we got talking to the receptionist,
and I kinda gave her a synopsis of
what was going on with me.
And so she, I could tell there was,
she really felt sorry for me because I was pretty broken up
when I was talking to her.
She was trying to reassure me things were going to be okay.
So with that being said,
she knew of a place here in Nebraska called
the Nebraska Commission for the Blind and Visually Impaired.
And basically what it is,
it's state-ran vocational rehabilitation center.
So she called one of the supervisors.
As a matter of fact, she's out of Omaha.
Her name is Nancy Flearl,
and she kinda told her what I had said to her.
Within about a half hour, Nancy Flearl called me back,
told her my story.
Once again, I was just really broken up,
because I think at that time, once I knew there was help,
there was just so much of a sense of relief.
It was just a really big emotional rollercoaster that day,
and I think a lot of it was just I was just relieved
that I kinda knew at that point I wasn't gonna be
in my current situation the rest of my life.
So Nancy set up an appointment
where we would meet a week from that day,
so, and I felt really good about it,
and then about a half hour later,
she calls me back and she says, "What are you doing today?"
And I'm like, "Well, same thing I've been doing
for the last few months.
(laughing) I'm sitting on this couch."
She's like, "How about if I stop over after lunch?"
I'm like, "Okay, great."
So I gave her my address and, you know,
a little after lunch, she shows up.
She comes in and she immediately,
we get started on the paperwork, because at that time,
they had quite a long waiting line to get into the center,
and she kinda expedited my application
to kinda bump me up a little bit
to get me in a little sooner.
So we're walking out and I remember
it was a really nice late spring day,
and we say our goodbyes,
and as she's walking down the driveway,
she says, "Oh, wait a minute."
She says, "I forgot I have something for you."
So she came walking back to me and she says,
"How tall are you?"
I'm like, "I'm six foot even."
She says, "I think I might have one that'll fit you."
She goes to her car and she comes back with a white cane,
a long white cane.
She spent about a half hour with me
just up and down the driveway.
She just showed me the real basic fundamentals.
I mean, just basically, you know,
how the cane sweeps back and forth
and how you alternate between your steps and your cane.
That was it.
I mean, there was really no other really techniques,
but man, I'm gonna tell you what, when she left,
and I know there's blind folks out there.
It was really hard for a lotta blind folks
to accept the point in their life
where they need a white cane,
and I understand that completely, but in my case, oh man.
I tell you what, you thought it was Christmas morning.
That was the greatest gift I ever got. It really was.
And after she left, I'm out there,
and I'm bebopping back and forth,
going up and down the driveway,
and my buddy, he's just laughing at me.
So we ended up jumping in his truck and we went to a park.
I was able just to walk in the open space of this park,
and I didn't know what I was doing with the cane.
I just knew enough to swipe it
to make sure I didn't run into trees,
and my buddy, man, he just laughed so hard,
and it was great.
It was freedom. It was independence.
That white cane was my ticket off the couch.
Like I said, you're a much different guy
that I know since I've met you
than the guy sitting on the couch.
How would you, like, describe yourself now
and your life now compared to early on
after some of those surgeries?
Before all of this, before the
vocational rehabilitation,
I was existing.
Now I'm living. I'm living life to the fullest.
I'm having fun, and I tell a lot of my sighted friends
and family this, and I really don't think they get it,
but honestly, right now,
I'm happier than I've ever been in my life.
You know, before my blindness,
it was all about material things,
you know, the nice cars, the home and all that stuff,
and that stuff's important, but it shouldn't rule your life,
and it did mine, you know?
And now it's just I feel that I'm free.
The old me is, and again, I don't wanna sound melodramatic,
but the old me is dead and gone.
I don't miss that person anymore.
Like I said, I'm happier than I've ever been in my life,
and, you know, I wake up every morning
and I just can't wait for my feet to hit the floor
and to see what I'm gonna do that day.
I get material things, you know,
aren't the most important thing in life,
but I do know that there are some material things
that you really enjoy.
Yeah, I like my tech, well,
and that's the fascinating thing about tech.
You know, I didn't know anybody
who was blind or visually impaired,
or when I finally lost all of my sight,
I resided to a flip phone because, you know,
I was a big Android guy before.
You know, I was a big tech geek before I lost my sight.
So I didn't think I was gonna ever get
to use computers or smartphones.
And I remember I went and got me this little Verizon,
I don't even know what it was,
but it was just some kind of little cheap flip phone,
and, you know, on those, you can actually text.
You know how it has the letters on the numbers
and you gotta cycle through?
Oh, that was just ridiculous. This is horrible.
But once I lost my sight and I actually,
once I got into vocational rehabilitation,
you know, they introduced me to a lot of the technology,
especially in the beginning.
It made it bearable that I could actually play
with tech now again, you know?
That's the one thing that I'm really appreciative
when it comes to vocational rehabilitation,
especially for the service or the state service
that I attend.
They have a really good tech program.
You know, they teach you everything from how to use iOS
and JAWS and NVDA and Narrator,
and I guess that's all I needed.
I needed to know that I could get
onto the information highway, and once I did that,
then, you know, it was a no-brainer for me.
I just did all my own research.
And so one of the things I love now is technology,
and after I leave the center,
I am pursuing a career in accessible technologies.
Hopefully one day, I'll be able to teach other blind
and low-vision folks how to use accessible technology.
Knowing you, the sky's the limit, Eddie,
whatever you want to do.
Hey, so I wanna go back to the doctor's office just quickly.
I know that you had said, you know,
being in an ophthalmologist's office,
you think they would have something
that they could hand somebody to direct you,
but if you could go back, knowing your experience now,
is there any advice that you would give
to some of your doctors as you were kinda going
through this journey?
I think I would caution the doctor that I had
about the false hope thing.
I know people do not want to hear,
"You're going blind and you probably won't see again."
I know people don't want to hear that.
It would be helpful in the long run
if they would've been a little more honest with me.
I don't even really want to use the word honest,
maybe straightforward.
I don't think he meant any harm, I really don't,
and maybe some of it also is the way
that I interpreted the information that they gave me.
Maybe I was at a point to where I had all this hope
and I wanted to hear what I wanted to hear.
At the very least, they need to be able
to provide you with some resources
and not wait till the very end
to where they can't do anything else for you,
because my vision was bad enough,
even at the beginning of all these procedures,
that they coulda gave me some information
because there is that term, legally blind,
but I'm sure there was a point to where,
before I lost all my sight,
that I could've qualified for some help and some resources.
Eddie, how about somebody who's going
through this experience that you went,
like is new to vision loss?
Is there any advice that you would give to them?
Seek resources. That's the most important part.
Even if you're not a very social person,
there are people out there that want to help you.
There is great resources out there.
Also, this is an,
I don't know, I don't wanna say an exciting time,
but this is a good time to be blind
because there's just so many technical advances
that have happened just within the last four or five years,
things, you know, like accessive technology
and just in the blindness world alone,
and I'm gonna use the term for myself.
It's quite exciting because if I would've lost my sight
let's say 10 years ago, maybe even 5 years ago,
surely there wouldn't have been the technical things
that help me throughout my day and throughout my life,
and especially now with like the social aspect of blindness,
especially like social media,
and I think that also helps me too,
being able to share experiences with other blind folks.
Yeah, I think all those things are important,
so the community, the reaching out
and finding like-minded people,
whether it's somebody who is blind
or somebody who is interested in astronomy like you are,
so just getting that sense of community back.
And then the other thing I liked that you mentioned
was searching for resources, 'cause I think that people
who were experiencing a vision loss
feel the same way you do when you were on the couch.
"I feel alone. I feel hopeless."
And so knowing that there is hope,
and whether that's hope for regaining some of your vision
or just hope that this isn't the end
of what life can be for you,
that's an important thing to have, right?
I think what it also comes down to is
the sense of independence, doing it my way,
and I'm gonna borrow this tagline from the NFB,
but it goes something like, "Doing what I want, when I want,
how I want without inconveniencing myself or others."
That's priceless.
You know, I think that's another thing
that really disturbed me when I was sitting on that couch.
Everything that I had to do,
I had to depend on somebody else.
When you're interacting with friends and family
and you're blind and you can't help yourself,
and this is no fault of them because they were like I was.
I did not know any blind people.
I did not know how to interact with blind people,
but everybody did everything for me.
And as somebody, before I lost my sight,
who was as independent as I was,
that's what tore me down the most,
not being able to do it myself,
and that's what kept me on that couch.
And it's also what motivated you
to get off the couch, right?
Yeah, yeah, because like I said,
I got tired of being a big baby
and just sitting around feeling sorry for myself.
I was embarrassed of myself, you know?
It's like, come on, you know?
This can't be it. This can't be the rest of my life.
So fast forward to today, I'm very happy.
I'm finishing up my time at the training center.
I'll be graduating soon
and off to life's next big challenge.
Eddie, this is great.
I mean, thanks for sharing so much.
And I wanted to say one more thing.
We talked about networking with other blind folks,
and I'm sure most of your listeners are familiar
with your discussion groups, but way before Clubhouse,
way before I got back on Twitter,
I always loved going to the Hadley discussion groups.
I would even attend things that I wasn't even interested in,
like the crafts and things like that
because the people in there are just so nice,
and it's just a great place to go and interact with, like,
people like yourself.
And we'll have a link to those discussion groups
in our show notes, and also,
if any people want to reach you,
maybe go follow you on Twitter,
we can have that information in the show notes as well,
if you like, if people wanna reach out.
Yes, if you wanna get a hold of me on Twitter,
I'm @eddieisblind, all one word, of course.
You can find me on Clubhouse, @eddieisblind,
and you can also find me on Reddit, eddieisblind.
Fantastic.
Well, thank you so much for sharing just your journey
of what it was like to ride that rollercoaster
and then ultimately get into a place where you are happy
and you're ready to share that
with other people in a similar situation.
Really appreciate your joining us on the show.
Oh, and Eddie, I mean,
I so enjoy every time I spend with you.
So I think there's so many people that are new
to vision loss and trying to figure out this whole thing
that are just gonna relate to so many things
that you were able to share and so many, you know,
some great advice you were able to give,
so I so appreciate that.
Oh, you bet you, and thank you guys for having me.
This has been a wonderful experience,
and I just really believe what you folks
at Hadley are doing is such a good thing,
especially since you've revamped your curriculum.
It's just a great place for information and for networking,
and I personally really appreciate what you folks do.
Thank you both. Got something to say?
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(upbeat music)