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Out of Darkness: Navigating Life After Blindness

Out of Darkness: Navigating Life After Blindness


– Imagine, if you can, being
accustomed to seeing the world in all of its bright technicolor
beauty and then, you can’t. You’re blind. It’s a loss that goes far
beyond a loss of vision. Being plunged into a
world of physical and emotional darkness where
you can’t find your way out. Out Of The Darkness: Navigating
Life After Blindness, this week on MI Healthy Mind. Let’s talk about it. (upbeat music) Welcome to MI Healthy Mind. I’m Anthony Pollicella. When we think about what
it means to become blind, what we’re generally talking
about is the loss of eyesight. But, of course, it’s
much more than that. It’s the loss of familiarity,
the loss of independence. It’s the loss of confidence
and security, the loss of joy, and all too often, it’s the
loss of the will to live. Today, my colleague,
Elizabeth Atkins, talks with Jeff Hawkins about
his slow, progressive descent into blindness and how he
ultimately came into the light with a little help
from his friend. – Jeff, welcome to
MI Healthy Mind. – Oh, thank you. – We’re glad to have you. – Thank you. – You’re welcome. So, you weren’t born blind– – No, no. – You lived a very
normal, active, outdoorsy, crazy-active, as you call it,
life until at around age 23 you began to go blind. – [Jeff] That’s right. – Can you tell us your story? – Yeah, well, it’s exactly that. I was that typical, outgoing,
very social 21 year old guy just living my life pretty
hard like most of us did and about 23 I went to
the Secretary of State to renew my driver’s
license and the lady said, “Would you read the letters,”
as you know and she said, “No, I need you to
start from the left,” and I did it again and she said, “No, I need you to
start from the left,” and I did it again and she said, “You’re not doing
this,” and I said, “Well, I am,” and I moved
my head around a little bit and used more of my right eye
and found that I was actually missing about five or six
letters on the left side and to the point where I probably
irritated this person because I just wanted to be
able to read these. It was very confusing,
like what’s going on here? To that point, I had
no idea that I had any visual difficulties to
speak of, I mean, like nothing. So, over the course of
the next few months, I saw specialists and doctors
and testing and so on and I saw specialists and doctors
and testing and so on and I was ultimately
given a diagnosis of
Stargardt’s Disease. It’s a juvenile form of macular
degeneration, a dry form. It’s not the wet form,
or the age-related form that most people
are familiar with. I was 23 when diagnosed and
like most people at that age, most guys, or just
young people at 23, I thought I was bullet-proof
and I chose to just forget about it and do nothing. I’d just finished my
coming out of college with my paramedic license, which
was a lifelong dream of mine. I always wanted to do that
job and I finally achieved it and it was everything that
you might imagine it would be. I mean, there’s the
blood, there’s the guts, there’s delivering
babies, there’s just
action all the time. I’m a bit of an
adrenaline junkie so it was sort of
right up my alley. And I did, I stepped off into
that career and I was able to do it for oh, probably
20, 23 years or so before my vision got to the point
where it was no longer safe. I was able to continue working
due to the kindness and the help of co-workers and
the people in the community that were aware of my situation. By the 1990s, I had become
legally blind and I knew, at that point, I had to
take an early retirement. That was a very heartbreaking
time for me because it was something that I
wanted to do and probably would still be doing, at
least on some basis, today. I was in total denial of
my blindness and I refused to accept it and I also
decided I wasn’t gonna be one of those people that
had that stereotypical view of sitting on a corner
begging for nickels with you white cane
and your tin cup. (somber piano music) – [Man] My job was
causing me so much stress. – [Woman] I felt
disconnected and frightened. – [Man] I felt so isolated. – [Woman] I was beginning
to feel trapped, depressed. I never expected
that to happen to me. – We think nobody else
feels the pain that we feel, but that is so untrue. – [Man] It’s just good to
be able to talk about it. – [Woman] I was
able to seek help. I found it from Team Wellness. – [Man] It’s a sense of freedom. – [Announcer] Team
Wellness Center. You are not alone. (pleasant piano music) – So, the definition of legally
blind is really two-fold. We look at someone’s distance
vision and we look at their side or peripheral view. What legally blind
does not mean is that a person is in total darkness. In contrast, actually, they have some usable, residual vision. With Stargardt’s Disease,
and the group of conditions known as macular degeneration, these diseases start
with the person losing their central vision. Most typically, with glaucoma, the vision loss starts
with the peripheral view. And lastly, with
diabetic retinopathy, this vision loss can
be in the central or the peripheral view. – So, tell us how
you were coping with
such an enormous loss Your eyesight, you said
you were in denial, but how could you ignore
something like this? – Well, it was pretty
easy for me because that’s basically what I
did is I ignored it. You know, in my personal life, when things really
began to fail, there’s things that most
people don’t think about. Simple things like
personal hygiene, clipping my nails,
you know, shaving. Did I get everything off right? Am I crooked? Combing my hair,
does it look right. Dress, you know, is my
shirt on inside-out. (chuckling) That’s probably happened
over the years but things along that line, I realized
that I needed to do something. I just can’t go on like
this and, of course, my wife is saying you
gotta do something because this just isn’t working. I was closed in the
house and on a winter day here in Michigan you go from
window to window to window waiting for my wife
to get home or my son. She’d come home from
a hard day of work and want to put her
feet up and I’d say “No, no, no! “Change your clothes! “I’ve got to get out of the
house and go do something.” So, it was an ugly
time, if you will, and that’s the way I
lived my life and then, eventually, it became an issue. I was stepping off
in front of cars and being yelled at
by people, you know. “What are you,
blind or something?” And I’m thinking in my head,
well, yeah, I sorta am. In the beginning years as I
started to notice some changes, I sort of just kept
pushing it away and pretending it wasn’t real, finding myself sort of
agreeing with things that visually people
are telling me about even though I hadn’t seen
them. There was a lot of hiding
behind this facade of this can’t be happening
to me and you know, I don’t want it happening
to me kind of thing. I’ve come to the point now
that I realize that that’s just the way it is, you know, and
a lot of anger, frustration. I’m sure some
depression at points. How I coped with it? I didn’t. I just pretended it wasn’t real
until there was no other way to look at it but being real. Really, what happened to me
is I began to lose the person that I was and went
to a very dark place. (pleasant piano music) (melancholy orchestral music) (intense upbeat
orchestral music) – [Announcer] When
depression meets hope, everything can change. Give someone who is struggling the help they desperately need. the help they desperately need. Your support of the National
Alliance on Mental Illness funds programs and
support groups that
can transform a life. Be part of the NAMI effect. Hope starts with you. (pleasant piano music) – So, people with
progressive vision loss sometimes may experience
mental health issues related to anxiety and depression
associated with grief. Now, the grief is really
related to not only the loss of their visual functioning
but the loss of the life they previously experienced. Some of these symptoms
of anxiety and depression may be the following: a feeling of
hopelessness, anger, fear, an inability to carry
on with activities that we used to enjoy, isolation from others and
from within the community. All of these contribute
to an individual’s mental health issues. – Jeff, you really struggled
through a long time coping with going blind. Tell us about that. – Yeah, I mean, for
10 or more years, as we’ve talked about earlier, the whole denial thing
and probably some ego and other things that
go along with it. I joke a lot time when
I’m speaking about it, I liken it to my wife will say, “Let’s stop and ask
for directions.” Me, as the guy, says, “No, we’ll find our way.” So, there’s just some
stubbornness in there, I think, in our gender to
start with but really, just overall denial
and frustration and
I got to the point, after 10 or more years that I
realized I gotta try something and I went online and
ordered my own white cane. To step out that front
door that first time and start walking down the street
with this cane in front of me really was a horrible
experience, to be
honest with you. It was very awkward,
but as I did it more, I became more
comfortable with it. – What made you realize that
the cane was not for you? – First of all, nothing
wrong with cane travel. For me, it became sort of– It helped immensely but it
seemed to draw the kind of attention to me that I
wasn’t really interested in. I’ll give you an example. If I was walking down, when
I first started traveling with the cane, I was walking
down the sidewalk in Rochester. One day, my wife said, “Boy, I wish you could see.” And I said, of course, so do I. (laughing) But I said, “Why is that?” She says, “It is literally like you
are Moses, I mean the sidewalk, “for 100 feet in front
of you is parting.” I’m like, what? As I’m walking down, as
I got close enough to see movement of people, that’s
exactly what was happening. People were literally
putting their backs up against the wall, so that was
the part that finally started turning me off of the
situation, if you will. If I walked into a room,
a party or somewhere, people certainly respect
and allow you room. They see the cane. They know you’re blind. But, they look at
you differently. They don’t approach you. They don’t. So, you’re sort of still
pushed back in that dark world. At least, I was. Not everybody, and that
should be made clear. – Then you got your dog. – I got my dog, yes, I did. I got Gracie and
from that moment on, I began to get my life back
and find the guy that I lost. (pleasant guitar music) – Michigan is home
to thousands of legally blind
people of all ages. This means that, as a
driver, sooner or later you’ll encounter a
pedestrian who is blind. When you see a pedestrian using
a leader dog or white cane, your responsibility
is simply to follow the rules of the road and
obey all traffic signals. Don’t honk at a
blind pedestrian or stop at a green light
to let them cross. They’ll use their hearing and
their dog or cane to stay safe We just need you
to do your part. (pleasant piano music) – Some people with
vision loss have to face challenges that others do not. They might have to look
at alternative careers or employment and,
in some cases, they may have to stop
working altogether until they learn the
skills that they need to go back and
pursue their careers. In addition to this, many
people with vision loss, we take this for granted,
they have to stop driving. They have to rely on
family members and public transportation to start navigating through
their communities. This is where the
support of family and friends is so, so critical. The good news is that once
people regain some of the skills that they need to carry
on with their life, for example, learning new
independent living skills, going back and
learning vocational
rehabilitation techniques specifically for people
with low vision or who are visually impaired
or, for that matter, who ae totally blind. Once they gain these skills and
their confidence comes back, their life comes back. – Jeff tell us how you
got paired with Gracie and what she’s
meant to your life. – Yeah, it’s an amazing
thing and I love when I get asked this
question, actually, because it’s really
an incredible thing, the way they match these
dogs with the clients. Basically, Leader
Dogs for the Blind, they require that you have some
type of formal cane training which I did, and so I
spent a week with them so they got to know
me at that point, a little bit about
my personality and those types of things
and my activities level. So, you kind of give them a
little bit of that information and then they talk to you. There’s a one-on-one
kind of interview, like what do you like to do and
you know like I like to walk but sometimes I want to
power walk so I need a dog that will go fast, I need a
dog that will keep up with me. All this stuff. I would say it took
about three months before they finally called and said, “You know what, can you come? “We believe we’ve got the
perfect match for you.” And you don’t know
what it is, right? It could be a black
Lab, a yellow Lab, a Golden Retriever, a Shepherd. You have no idea what kind
of dog you’re gonna get. So, there’s a lot of anxiety
and excitement along with that. You move right in for 26 days. The first day on campus
you spend with your trainer and he’s kind of
like your dog, right. So, he’s holding the harness
and we’re in downtown Rochester and we’re learning the commands
Forward, and Right and Left and Find The Curb and all the
things that we need to know and eventually, there was
a knock at my door and in bound this 16 month old
yellow Lab pup and I mean, if you think you
don’t have tears coming down your
eyes at that point. My goodness, it was one
of the most powerful emotional moments of my life. She jumped on me and
licked me and just played and spun and played
and all this stuff. By the third morning, when the alarm goes off
and I get out of bed, her tail’s going so hard
her butt can’t stay still. So, I knew at that
moment, three days later, that the connection was
made so for the next 23, 24 days at that point,
we trained everywhere. I mean, we were in the malls. We were in Target. We were in Meijer, We were in Detroit. We were in the People
Mover, the casinos, in neighborhoods,
in woods, on trails, anywhere where you
would conceivably use the dog, we trained. After the 26 days
you come home and the training is not done
yet, because remember, Gracie’s been trained for
somebody that’s totally blind, right, and I have some
residual vision so we have to work through
those issues and she’s in my environment
and learning my life and I’m learning more about how
she’s gonna act in my life. The beauty about being paired
with Gracie in 2012 is, very quickly, I began to find
the person that I lost and that sounds a little
maybe melodramatic but it’s so honestly true, not only with me but
anybody who has been blessed to have a Leader Dog and
that’s exactly what it did. It gave me my independence,
my mobility back and quickly comes this
self-confidence and self-esteem and all this stuff came
back and I began to find the person that I lost
and I’m now water-skiing, snow-skiing, jet-skiing,
boating, swimming. Recently, my wife and I
started backwoods wilderness backpacking that
Gracie goes with us. Gracie and I go
everywhere together and over the last five
and half years, there’s only been a
very few times that I didn’t have her with me. I mean, we are
joined at the hip and we are the perfect working team. (pleasant guitar music) – [Woman] Stress, depression
and severe mental illness can happen to anyone. Team Wellness Center has
been helping those struggling with these conditions in
Southeastern Michigan. – [Woman] They get a chance
to know that somebody’s on their team. – We think nobody else
feels the pain that we feel. We feel like I’m the only
one, but that is so untrue. – [Woman] Within 24 hours
of reaching out to our team, members receive
psychiatric evaluations and begin the necessary
treatment for recovery. – Working through my
problems and seeing that I’m not the only one that has
to cope has really brought me to a place where now it’s
okay to talk about it. – Because if you keep stuff to
yourself, you can’t overcome. We all need one another. – [Woman] Team Wellness Center. You are not alone. (pleasant piano music) – [Announcer] Welcome
to MI Healthy Mind. – The show that dares to talk
about mental health matters that touch nearly every family. Each week, you’ll meet guests
who’ll share their stories, hear from local experts and learn about resources
that may help. – And so, I was in a
committee meeting at the House of Representatives
when I realized that my daughter had autism. – We need to take the stigma
away from mental health issues. – No topics about mental
health and wellness are off-limits on our show. – Let’s talk about it
on MI Healthy Mind. (pleasant piano music) – Tell us about how,
with Gracie’s help
of finding yourself again, you can enjoy your
family life again. – Well, I guess the best
answer for that would just be it’s changed my outlook
and my attitude and everything about it. There’s no darkness in my
life anymore which really allows me to, like
we said earlier, live my life and love my
life again but it also, it’s much happier
family-wise, you know. Wife and grandkids and it’s
all really good at this point. – So, what are your
goals for the future? – It’s absolutely to continue
doing what I’m doing. I’m very passionate about
any education I can offer to anybody in public, whether
it be what the dogs do for us or the services out there
and that sort of thing and going back to we are not that
guy sitting on the corner with the white cane and
a cup, begging nickles. We are educated. We have so much to offer. I think the statistic is
like 70% of disabled people are unemployed and
that’s a lot of untapped abilities out there and
so my goal is to continue to do that and I’ve
recently been involved with a new program
at Leader Dogs called Harness the Power of Leadership. It’s a one-day seminar
that’s been developed for mid-to-high-end
management to correlate how Gracie and I
became such a great working
team. Some of those tools and
how they are so tied into proper communication,
proper teamwork and those types of things with
dealing with your team groups or work groups, if that’s
what you want to call them. It’s quite an awesome
program and so, I’m getting involved
in that and I hope that that blossoms into something
really big as well. My goal is just to
get out there and keep doing what I was doing. – Jeff, now, is there any
particular message that you’d like to leave with our
viewers about an experience you might have had that
could encourage people? – I think simply it would
be that I understand where you’re at or
where you’re headed but from my perspective,
please understand, I’m telling you there
are services out there. There are organizations
out there. There’s all kinds
of tools out there, whether they be speaking
devices or magnifying devices, there’s so much out
there to help us continue living a normal life, including
these awesome Leader Dogs. But, you know, it
brings me to a thought. I was in Delaware in
April and speaking at an elementary school and
you picture 650 kids sitting Indian-style out there on the
floor and if you think that things don’t work,
aren’t for a reason, out of 650 kids, this guy
picked this one young man who was sitting very near the
front and I could see that his head was down
at the floor and very meekly said
into this microphone, “How does the dog work?” I said, “Well, you sort of saw
how the dog works,” and I explained a couple
things and then he said, “Because I don’t see well.” And I said, “You
don’t see well?” And he said, “No,
I don’t see well.” I said, “What can you see?” And he looked to his left and
across the row and he says, “Well, I can see there’s
somebody sitting there “”but it’s all fuzzyre’s
sand I can’t see it.”e “but it’s all fuzzy
and I can’t see it.” I says, “My gosh! All right.” So, my immediate response was “When we’re over here,
when this is done, “you come up here and see
me and I’m gonna let you “walk with Gracie and you can
see what the dogs can do.” So, the event got over and
the little guy stood up and we made sure that he got
up to me and I got him. I stood there and I think
he was a fourth grader, so he was just a short guy and
I got the harness in his hand and I said, “Now, tell Gracie
to find the door.” And so, very meekly, he said, “Gracie, find the door.” And Gracie took off and
walked him to the door, and the whole time, this
is gonna make me cry, I’m telling you, the
whole time over there, he just kept saying, “Thank you, thank
you, thank you.” We got to the door and he
turned and looked at me and I just kind of got down,
put my arm around him, I said, “Look, understand
that, look at me. “I’m out traveling and I’m
doing what I’m doing and “there is so much stuff
out there for you. “Don’t get discouraged. “The organizations and
your school counselors and “you can work through this.” And he’s just like
yeah, yeah, yeah. I said, “Okay, you got it?” He says, “Yes, I do,”
and he turned and walked about three feet
away and this little guy turned around and
ran up and gave me the biggest bear hug in the
world and I swear to God, I was just teary-eyed and
everything at that moment. – Jeff, thank you
so much for sharing all of these wonderful
insights and information. And thank you, Gracie,
for joining us to show the power of Leader Dogs. – Yup, she’s an awesome thing. Thank you very much. I love to share. (pleasant guitar music) – Thank you for watching today. I hope that we’ve shed some
light on the mental and emotional effects of
acquired blindness and how Leader Dogs for the
Blind can help you or someone you love
out of darkness. I think that Gracie, here,
has also made us see why she, and dogs like her, are
truly man’s best friend. If you’d like to talk
or read more about this, or any other mental
health issue, please reach out to
us on our website, mihealthymind.com, through Twitter, @mihealthymind, or on Facebook. Thank you for watching. We’ll see you next week for another edition of
MI Healthy Mind. Let’s talk about it. Now, we’ll leave you
with MI Healthy Minute. – [Announcer] MI Healthy Minute, covering breaking
mental health news, legislation, discoveries
and resources. – Leader Dogs for the
Blind was founded in 1939 to enable people who are
blind or visually impaired to travel safely and
independently through partnership with a guide dog. Today, our services include
training on how to travel using a white cane and a
summer camp for teenagers to boost their travel
and leadership skills. There are over 1.3 million
legally blind people in the United States but
only small percentage use a white cane or a guide dog. Our challenge is to reach
people who can benefit from our programs to let
them know our services are provided free of charge. Leader Dogs for
the Blind does not receive any government funding. Individuals, corporations,
foundations and service organizations,
such as the Lions Clubs, makes up our donor base
and allows us to provide all our services free of charge. If you know someone who is
legally blind that could benefit from training on
how to use a white cane or a guide dog, please
have them contact Leader Dogs for the
Blind at 888-777-5332 or go online to leaderdog.org. (pleasant piano music)

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