June 6, 2024 • 14 mins
Aymen Majeed has just written a book "RP and Me" recounting diagnosis; education; bullying; and now with a family.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:15):
On Vision Australia radio. This is Vision Xtra with Peter Greco.
S2 (00:22):
Let's meet Ivan Martinez, who is in the process of
writing a book. Let's find out a bit more about
Eamon and why he's doing it. I mean, great to
meet you. Thanks for your time.
S3 (00:31):
No worries Peter, thanks for the opportunity.
S2 (00:33):
This is a bit about your background and your diagnosis
of RP. How did that all come about?
S3 (00:39):
I'm 36 years old. I was born in 88. My
condition was formally diagnosed in 1996. I would have been
six at the time, but I wasn't told about my
condition and about the diagnosis until much later on until
I was 15 years old. And that was in 2003.
And the reason for that. Is, uh, my parents made
(01:02):
a conscious decision not to tell me about my condition,
and it was just a protective measure more than anything. Just, uh.
Because I can imagine as as a father of three
myself having to be able to, uh, to tell a
child that they'll eventually lose their vision. It's, uh, quite confronting. So. Yeah,
(01:26):
my parents, um, didn't tell me about the diagnosis. And, uh,
in 2003, when I was eventually told in a very
dramatic appointment at the IND hospital, that was at the
point where my vision had deteriorated to the point that
I had become legally blind. So at that particular appointment, uh,
there was a social worker present. There was a psychologist, uh,
(01:48):
from the statewide, statewide, uh, vision, I think, statewide vision
Resource center. And there was also a visiting teacher and
then the ophthalmologist, uh, Hector McLean, which I'm sure many
listeners would have heard about or know know. So, yeah,
I was basically hit with the book. I was told
you got retinitis pigmentosa, you're losing your vision and you
(02:11):
have been all your life. And I mean, it's it's
not as if I was unaware that I had poor vision. I,
I kind of did, but I didn't know the extent
of it. And when I was younger and when I
was six, seven, I figured that the way that I
perceived the world, the way that I saw everything, was
(02:33):
the way that everybody else did. Now, I knew that
my vision was compromised, uh, to what extent? I didn't know,
but I was diagnosed with short sightedness and stigmatism. Or
at least that's what what what I was told. So
I wore glasses as a kid, and, um, I sat
at the front of the class to be able to read, uh,
(02:55):
from the whiteboard or the blackboard and then, yeah, I just,
I just thought that that that was the extent of it.
But circling back to the appointment at the India Hospital,
it was, uh, it was a turning point for me
and I, I discussed this, uh, in great length in
the book, and it was very hard to come to
(03:17):
grips with because I went from. Being led to believe
by my parents and, um, uh, and other people who
are close to me that my condition was treatable, short
sightedness was treatable through Lasik eye corrective surgery, and as
soon as I'd be old enough to receive that treatment, then,
(03:40):
you know my eyes would be okay, only to find
out that I was actually, uh, legally blind. I had
written on his pigmentosa, and I was gradually losing my vision,
and it was happening quite quickly. Uh, for somebody with, uh, RP, comparatively,
I think I'm probably one of the less fortunate. Um,
(04:01):
because it attacked my eyes, uh, quicker than it would
most being legally blind by 15 for somebody with RP.
It's not unheard of, but it is uncommon.
S2 (04:13):
And it hadn't been easy for you up until then either.
Aiming at school. I think you'd experienced some bullying, for example.
S3 (04:19):
That's correct. Yeah. So it's can be very cruel and
and and I guess they don't know any better. But
if somebody seems a bit different, they'll let you know
about it. And I did bear the brunt of, of
some awful bullying, um, to the point where, you know, I,
I started to kind of believe what the kids were
(04:40):
saying because they didn't know about the vision loss. They
didn't know about the RP because I didn't even know
about it. Now we're talking pre 2003 before I was
formally told about my condition. So they they always thought
that I was just a bit slow and dopey. So
I kind of believed that as well. And uh, that
was difficult for me to come to terms with. And
(05:01):
I had no explanation as to why I bump into
things constantly and why I trip over. Why if I
drop a pen on the floor in the classroom, why
I wouldn't be able to pick it up if it
was a crowded classroom and I came in a bit late. Why?
I wasn't able to find a seat as quickly as
the other kids. Uh, why I'd never been able to
(05:22):
play ball sports with any, you know. That, that kind
of thing and and that that's the kind of stuff
that kids really, uh, notice and, and they'll let you
know about it. And they did. And, um, yeah, I
was subjected to bullying. And it wasn't always just a
verbal bullying, you know, some sometimes it would be physical.
I was slight and smaller than than the other kids.
(05:46):
And when my year level. So I get pushed around
pretty easily. And, uh, that compounded with what was to come,
which was, you know, the news of my diagnosis and
my imminent blindness. Yeah, that was, uh, not really a
good combination for a 15 year old.
S2 (06:04):
And I guess you got things like, uh, you know,
potentially maybe getting your driver's license, obviously going out, having fun,
that sort of stuff. But, uh, 15 and 16 year
olds look forward to you kind of, uh, a not
being able to do that. And B kind of getting
a fairly, uh, dim, pardon the pun, but a fairly
dim sort of future being painted.
S3 (06:24):
Exactly right. I felt like everything else in around me,
everything else in the world was moving forward in a way,
you know, that was spiteful to me because I couldn't
really progress academically. I wasn't doing well or my my
handwriting was was becoming less and less legible. I was
(06:44):
falling behind in class and as you said, you know,
my peers were going for their Ells, learning to drive,
going out at night. And, um, you know, I'd never
been able to, to see well, at night at all.
You know, my mom told me stories of her noticing
that I'd struggled to see at night when I was
his youngest, too. Wow. So I always felt like I
(07:06):
was I was different from from the other kids and, uh, even, uh,
my immediate peers, uh, my close family, friends, uh, growing up, um,
and even, uh, my brother, who is a year younger
than me and the closest sibling to me in age,
I always felt like he kind of, uh, there was
(07:27):
a bit of a sibling rivalry, I guess you could say. But, yeah,
I was a I was a bit envious of him
growing up. And, I mean, as you would be, you know, you're, of.
S2 (07:36):
Course, a very natural I would say.
S3 (07:39):
Yeah. You know, as a kid, you know, you go
through these challenges and you look around and you just like,
you know why and you know why. All the why
is everybody else kind of moving forward in their lives
and doing the things that they really want to do,
where I'm lagging behind, and it's through no fault of
mine at all. And and I try and I, I
like to challenge myself. And I did try to challenge
(08:01):
myself because I didn't want to believe that I was different.
So I'd constantly try to put myself in in a
situations that weren't ideal for somebody with a vision impairment.
As I mentioned earlier, playing ball sports was something that
I could never do, uh, held properly. Really? Uh, but
(08:21):
that wouldn't stop me from trying, and it wouldn't end well,
because if I miss a kick, we're playing soccer, for example.
Or if a master flick the ball when we're playing, uh,
cricket or softball or or any, uh, any ball sport, really,
where there are a lot of moving pieces and parts
and things are moving quickly, it gets very difficult to,
(08:45):
to keep up. Uh, going back to what you mentioned
before about, um, going out at night, that's something that
I never actually did independently until later on in life
after school. Uh, probably when I was 18 or 19,
I just, I became really reserved, especially after the, after
(09:06):
I was told about, uh, about my IP and. Yeah. I, uh,
I kind of went, went into my shell as, as
they say. And, uh, I was in a state of denial. And, um,
I read a bit about what they call the five
stages of, of grief and, um, clinical psychology. And, uh,
(09:27):
the last stage, the final stage of grieving is acceptance.
And even speaking to you now, I don't really completely
believe that I reached that. And that's, I think, a
byproduct of, uh, you know, the dramatic nature of the
vision loss and the fact that it came so quickly
(09:49):
and the fact that I didn't really know as it
was happening that now as, as a grown man, I
still kind of struggle with it. I still avoid using
a mobility aid. I do own a cane, but I'd
avoid using it at every opportunity still till this day,
because I. I just have this perception that I'm being
(10:10):
viewed as inferior. Maybe because I'm still trying to play
the part of a sighted person because, uh, deep down,
I reckon I still want to be that. And of course,
I I'd want to be that. Uh, and I'm often
asked about, you know, what the difference is between somebody
who had sight and lost it compared to somebody who
(10:31):
was born completely blind. And I can't really speak to
the experience of somebody who's never been able to see,
but to have seen, uh, to have had vision and
for it to be taken away in the dramatic fashion
that happened to me. It's. Yeah, it's something that I've
never quite come to terms with. Uh, that's not to
(10:52):
say that I haven't really, you know, done things that
I'm proud of in my life, but, uh, and I
definitely have, but, I mean, RP probably took the best
years of my life from me and and really deprived
me of, you know, what people would deem to be
a regular childhood.
S2 (11:10):
I would. We're gonna we're gonna rapidly run out of time.
So we'll have to get you back another time to
talk more about it. But one of the things that
is very impressive about the way that you speak is
that you've written a book, and the book may well
be helping other people who might be going through similar things.
And I guess that's a bit of a motivation for
writing the book. And and we'll get you back when
(11:30):
it's about to be, uh, released or when it's completed.
But would that be fair to say that that's one
of the motivating factors for writing it? Definitely.
S3 (11:38):
Uh, if I had, uh, any advice for somebody who's
going through what I went through, I would say that
the quicker you try to deal with it and the
quicker you accept the help that's offered to you, and
there is more help offered now, you know, with the
world class facilities and resources that we have available to
(12:02):
us here in this country, the quicker that somebody accepts
those and, and moves forward positively for themselves, the better
and wind up being because it's, uh, you know, for
me personally, that is kind of the main barrier to
doing some of the things that I really wanted to do.
(12:23):
For instance, uh, growing up, I had a lot of
interest in, in IT and computers. I also did an
advanced diploma in computer systems engineering, and those are skills
that perished with with my vision, unfortunately, and because I
was refusing the help at the time to learn to use, uh,
screen reading software like Jaws and Magic and, uh, zoomtext,
(12:46):
because I was in denial and I became rebellious about
my vision loss. And I just didn't want that help
because I didn't want to be that person. I didn't
want to keep being told that I was going blind,
and I had to learn these skills because I'm losing
my vision. Uh, I refused that help, and that made
it much more difficult for me to cope as an
adult and even till this day. So if I had
(13:09):
any advice to to somebody who's going through that kind
of thing, a similar kind of experience that I did,
I'd say just deal with it while you can, because
later on in life you'll find that it'll just get
more difficult.
S2 (13:22):
I'm good to talk to you. We will get you
back up and me as the title of your book,
which I think is a cool title. We appreciate you
speaking to us and we'll catch up with you again
in the future.
S3 (13:32):
No worries Peter, thanks. Thanks for that.
S2 (13:34):
That's Ummon magi there. Uh, author of, uh, Arpi and me.
And we'll definitely get almond back in the future to
talk more about it.
S4 (13:46):
Thank you for listening to Vision Extra with Peter Greco.
This program was produced at the Adelaide studios of Vision
Australia Radio.
On Vision Australia radio. This is Vision Xtra with Peter Greco.
S2 (00:22):
Let's meet Ivan Martinez, who is in the process of
writing a book. Let's find out a bit more about
Eamon and why he's doing it. I mean, great to
meet you. Thanks for your time.
S3 (00:31):
No worries Peter, thanks for the opportunity.
S2 (00:33):
This is a bit about your background and your diagnosis
of RP. How did that all come about?
S3 (00:39):
I'm 36 years old. I was born in 88. My
condition was formally diagnosed in 1996. I would have been
six at the time, but I wasn't told about my
condition and about the diagnosis until much later on until
I was 15 years old. And that was in 2003.
And the reason for that. Is, uh, my parents made
(01:02):
a conscious decision not to tell me about my condition,
and it was just a protective measure more than anything. Just, uh.
Because I can imagine as as a father of three
myself having to be able to, uh, to tell a
child that they'll eventually lose their vision. It's, uh, quite confronting. So. Yeah,
(01:26):
my parents, um, didn't tell me about the diagnosis. And, uh,
in 2003, when I was eventually told in a very
dramatic appointment at the IND hospital, that was at the
point where my vision had deteriorated to the point that
I had become legally blind. So at that particular appointment, uh,
there was a social worker present. There was a psychologist, uh,
(01:48):
from the statewide, statewide, uh, vision, I think, statewide vision
Resource center. And there was also a visiting teacher and
then the ophthalmologist, uh, Hector McLean, which I'm sure many
listeners would have heard about or know know. So, yeah,
I was basically hit with the book. I was told
you got retinitis pigmentosa, you're losing your vision and you
(02:11):
have been all your life. And I mean, it's it's
not as if I was unaware that I had poor vision. I,
I kind of did, but I didn't know the extent
of it. And when I was younger and when I
was six, seven, I figured that the way that I
perceived the world, the way that I saw everything, was
(02:33):
the way that everybody else did. Now, I knew that
my vision was compromised, uh, to what extent? I didn't know,
but I was diagnosed with short sightedness and stigmatism. Or
at least that's what what what I was told. So
I wore glasses as a kid, and, um, I sat
at the front of the class to be able to read, uh,
(02:55):
from the whiteboard or the blackboard and then, yeah, I just,
I just thought that that that was the extent of it.
But circling back to the appointment at the India Hospital,
it was, uh, it was a turning point for me
and I, I discussed this, uh, in great length in
the book, and it was very hard to come to
(03:17):
grips with because I went from. Being led to believe
by my parents and, um, uh, and other people who
are close to me that my condition was treatable, short
sightedness was treatable through Lasik eye corrective surgery, and as
soon as I'd be old enough to receive that treatment, then,
(03:40):
you know my eyes would be okay, only to find
out that I was actually, uh, legally blind. I had
written on his pigmentosa, and I was gradually losing my vision,
and it was happening quite quickly. Uh, for somebody with, uh, RP, comparatively,
I think I'm probably one of the less fortunate. Um,
(04:01):
because it attacked my eyes, uh, quicker than it would
most being legally blind by 15 for somebody with RP.
It's not unheard of, but it is uncommon.
S2 (04:13):
And it hadn't been easy for you up until then either.
Aiming at school. I think you'd experienced some bullying, for example.
S3 (04:19):
That's correct. Yeah. So it's can be very cruel and
and and I guess they don't know any better. But
if somebody seems a bit different, they'll let you know
about it. And I did bear the brunt of, of
some awful bullying, um, to the point where, you know, I,
I started to kind of believe what the kids were
(04:40):
saying because they didn't know about the vision loss. They
didn't know about the RP because I didn't even know
about it. Now we're talking pre 2003 before I was
formally told about my condition. So they they always thought
that I was just a bit slow and dopey. So
I kind of believed that as well. And uh, that
was difficult for me to come to terms with. And
(05:01):
I had no explanation as to why I bump into
things constantly and why I trip over. Why if I
drop a pen on the floor in the classroom, why
I wouldn't be able to pick it up if it
was a crowded classroom and I came in a bit late. Why?
I wasn't able to find a seat as quickly as
the other kids. Uh, why I'd never been able to
(05:22):
play ball sports with any, you know. That, that kind
of thing and and that that's the kind of stuff
that kids really, uh, notice and, and they'll let you
know about it. And they did. And, um, yeah, I
was subjected to bullying. And it wasn't always just a
verbal bullying, you know, some sometimes it would be physical.
I was slight and smaller than than the other kids.
(05:46):
And when my year level. So I get pushed around
pretty easily. And, uh, that compounded with what was to come,
which was, you know, the news of my diagnosis and
my imminent blindness. Yeah, that was, uh, not really a
good combination for a 15 year old.
S2 (06:04):
And I guess you got things like, uh, you know,
potentially maybe getting your driver's license, obviously going out, having fun,
that sort of stuff. But, uh, 15 and 16 year
olds look forward to you kind of, uh, a not
being able to do that. And B kind of getting
a fairly, uh, dim, pardon the pun, but a fairly
dim sort of future being painted.
S3 (06:24):
Exactly right. I felt like everything else in around me,
everything else in the world was moving forward in a way,
you know, that was spiteful to me because I couldn't
really progress academically. I wasn't doing well or my my
handwriting was was becoming less and less legible. I was
(06:44):
falling behind in class and as you said, you know,
my peers were going for their Ells, learning to drive,
going out at night. And, um, you know, I'd never
been able to, to see well, at night at all.
You know, my mom told me stories of her noticing
that I'd struggled to see at night when I was
his youngest, too. Wow. So I always felt like I
(07:06):
was I was different from from the other kids and, uh, even, uh,
my immediate peers, uh, my close family, friends, uh, growing up, um,
and even, uh, my brother, who is a year younger
than me and the closest sibling to me in age,
I always felt like he kind of, uh, there was
(07:27):
a bit of a sibling rivalry, I guess you could say. But, yeah,
I was a I was a bit envious of him
growing up. And, I mean, as you would be, you know, you're, of.
S2 (07:36):
Course, a very natural I would say.
S3 (07:39):
Yeah. You know, as a kid, you know, you go
through these challenges and you look around and you just like,
you know why and you know why. All the why
is everybody else kind of moving forward in their lives
and doing the things that they really want to do,
where I'm lagging behind, and it's through no fault of
mine at all. And and I try and I, I
like to challenge myself. And I did try to challenge
(08:01):
myself because I didn't want to believe that I was different.
So I'd constantly try to put myself in in a
situations that weren't ideal for somebody with a vision impairment.
As I mentioned earlier, playing ball sports was something that
I could never do, uh, held properly. Really? Uh, but
(08:21):
that wouldn't stop me from trying, and it wouldn't end well,
because if I miss a kick, we're playing soccer, for example.
Or if a master flick the ball when we're playing, uh,
cricket or softball or or any, uh, any ball sport, really,
where there are a lot of moving pieces and parts
and things are moving quickly, it gets very difficult to,
(08:45):
to keep up. Uh, going back to what you mentioned
before about, um, going out at night, that's something that
I never actually did independently until later on in life
after school. Uh, probably when I was 18 or 19,
I just, I became really reserved, especially after the, after
(09:06):
I was told about, uh, about my IP and. Yeah. I, uh,
I kind of went, went into my shell as, as
they say. And, uh, I was in a state of denial. And, um,
I read a bit about what they call the five
stages of, of grief and, um, clinical psychology. And, uh,
(09:27):
the last stage, the final stage of grieving is acceptance.
And even speaking to you now, I don't really completely
believe that I reached that. And that's, I think, a
byproduct of, uh, you know, the dramatic nature of the
vision loss and the fact that it came so quickly
(09:49):
and the fact that I didn't really know as it
was happening that now as, as a grown man, I
still kind of struggle with it. I still avoid using
a mobility aid. I do own a cane, but I'd
avoid using it at every opportunity still till this day,
because I. I just have this perception that I'm being
(10:10):
viewed as inferior. Maybe because I'm still trying to play
the part of a sighted person because, uh, deep down,
I reckon I still want to be that. And of course,
I I'd want to be that. Uh, and I'm often
asked about, you know, what the difference is between somebody
who had sight and lost it compared to somebody who
(10:31):
was born completely blind. And I can't really speak to
the experience of somebody who's never been able to see,
but to have seen, uh, to have had vision and
for it to be taken away in the dramatic fashion
that happened to me. It's. Yeah, it's something that I've
never quite come to terms with. Uh, that's not to
(10:52):
say that I haven't really, you know, done things that
I'm proud of in my life, but, uh, and I
definitely have, but, I mean, RP probably took the best
years of my life from me and and really deprived
me of, you know, what people would deem to be
a regular childhood.
S2 (11:10):
I would. We're gonna we're gonna rapidly run out of time.
So we'll have to get you back another time to
talk more about it. But one of the things that
is very impressive about the way that you speak is
that you've written a book, and the book may well
be helping other people who might be going through similar things.
And I guess that's a bit of a motivation for
writing the book. And and we'll get you back when
(11:30):
it's about to be, uh, released or when it's completed.
But would that be fair to say that that's one
of the motivating factors for writing it? Definitely.
S3 (11:38):
Uh, if I had, uh, any advice for somebody who's
going through what I went through, I would say that
the quicker you try to deal with it and the
quicker you accept the help that's offered to you, and
there is more help offered now, you know, with the
world class facilities and resources that we have available to
(12:02):
us here in this country, the quicker that somebody accepts
those and, and moves forward positively for themselves, the better
and wind up being because it's, uh, you know, for
me personally, that is kind of the main barrier to
doing some of the things that I really wanted to do.
(12:23):
For instance, uh, growing up, I had a lot of
interest in, in IT and computers. I also did an
advanced diploma in computer systems engineering, and those are skills
that perished with with my vision, unfortunately, and because I
was refusing the help at the time to learn to use, uh,
screen reading software like Jaws and Magic and, uh, zoomtext,
(12:46):
because I was in denial and I became rebellious about
my vision loss. And I just didn't want that help
because I didn't want to be that person. I didn't
want to keep being told that I was going blind,
and I had to learn these skills because I'm losing
my vision. Uh, I refused that help, and that made
it much more difficult for me to cope as an
adult and even till this day. So if I had
(13:09):
any advice to to somebody who's going through that kind
of thing, a similar kind of experience that I did,
I'd say just deal with it while you can, because
later on in life you'll find that it'll just get
more difficult.
S2 (13:22):
I'm good to talk to you. We will get you
back up and me as the title of your book,
which I think is a cool title. We appreciate you
speaking to us and we'll catch up with you again
in the future.
S3 (13:32):
No worries Peter, thanks. Thanks for that.
S2 (13:34):
That's Ummon magi there. Uh, author of, uh, Arpi and me.
And we'll definitely get almond back in the future to
talk more about it.
S4 (13:46):
Thank you for listening to Vision Extra with Peter Greco.
This program was produced at the Adelaide studios of Vision
Australia Radio.
Popular Podcasts
Spooky Podcasts from iHeartRadio
Whether you’re a scaredy-cat or a brave bat, this collection of episodes from iHeartPodcasts will put you in the Halloween spirit. Binge stories, frights, and more that may keep you up at night!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.