since the day I was born I’ve been going blind I’m 1 in 4,000 and
I’ve been going blind I’m 1 in 4,000 and
I’ve been going blind I’m 1 in 4,000 and the first woman in 3 generations of my
the first woman in 3 generations of my
the first woman in 3 generations of my family to be born with a rare genetic
family to be born with a rare genetic
family to be born with a rare genetic divides known as retinitis pigmentosa RP
divides known as retinitis pigmentosa RP
divides known as retinitis pigmentosa RP for short
for short
for short basically deteriorates the cells of the
basically deteriorates the cells of the
basically deteriorates the cells of the retina and while it affects each person
retina and while it affects each person
retina and while it affects each person differently most experience tunnel
differently most experience tunnel
differently most experience tunnel vision night blindness and a complete
vision night blindness and a complete
vision night blindness and a complete loss of sight these changes occur over
loss of sight these changes occur over
loss of sight these changes occur over time and in my case I have 10% of my
time and in my case I have 10% of my
time and in my case I have 10% of my vision remaining with distinct blind
vision remaining with distinct blind
vision remaining with distinct blind spots and constant flashing lights you
spots and constant flashing lights you
spots and constant flashing lights you know those little red lights that you
know those little red lights that you
know those little red lights that you get sometimes when you shut your eyes
get sometimes when you shut your eyes
get sometimes when you shut your eyes and you’re you’re about to fall asleep I
and you’re you’re about to fall asleep I
and you’re you’re about to fall asleep I see those every minute of every day and
see those every minute of every day and
see those every minute of every day and you probably can’t tell because I’ve
you probably can’t tell because I’ve
you probably can’t tell because I’ve done everything in my power to make sure
done everything in my power to make sure
done everything in my power to make sure that you don’t know that I’m legally
that you don’t know that I’m legally
that you don’t know that I’m legally blind now you’re wondering what 10
blind now you’re wondering what 10
blind now you’re wondering what 10 percent kind of feels like do me a favor
percent kind of feels like do me a favor
percent kind of feels like do me a favor put your hands and little small circles
put your hands and little small circles
put your hands and little small circles like that hold them up to your eyes kind
like that hold them up to your eyes kind
like that hold them up to your eyes kind of like binoculars try to look around
of like binoculars try to look around
of like binoculars try to look around it’s kind of what it feels like and as a
it’s kind of what it feels like and as a
it’s kind of what it feels like and as a bonus y’all look pretty silly so when I
bonus y’all look pretty silly so when I
bonus y’all look pretty silly so when I run into you later I won’t be quite as
run into you later I won’t be quite as
run into you later I won’t be quite as embarrassed so thank you for that now
embarrassed so thank you for that now
embarrassed so thank you for that now this isn’t a story about blindness and
this isn’t a story about blindness and
this isn’t a story about blindness and it’s not a story about overcoming a
it’s not a story about overcoming a
it’s not a story about overcoming a disability this is my story the story
disability this is my story the story
disability this is my story the story about how I deal with the reality of
about how I deal with the reality of
about how I deal with the reality of going blind it’s about my belief system
going blind it’s about my belief system
going blind it’s about my belief system of accepting inevitable change preparing
of accepting inevitable change preparing
of accepting inevitable change preparing for that change and coping with the fear
for that change and coping with the fear
for that change and coping with the fear of change accept prepare cope
now I was diagnosed at 16 but if I’m
now I was diagnosed at 16 but if I’m honest I’ve always known I grew up
honest I’ve always known I grew up
honest I’ve always known I grew up watching the men of my family become
watching the men of my family become
watching the men of my family become more and more reliant on the people
more and more reliant on the people
more and more reliant on the people around them I watched my father have to
around them I watched my father have to
around them I watched my father have to completely reinvent himself after he
completely reinvent himself after he
completely reinvent himself after he lost his job about the same age I am now
lost his job about the same age I am now
lost his job about the same age I am now and while it’s really difficult to see
and while it’s really difficult to see
and while it’s really difficult to see them struggle it’s even more challenging
them struggle it’s even more challenging
them struggle it’s even more challenging when you realize that their presence is
when you realize that their presence is
when you realize that their presence is my future and as an independent woman a
my future and as an independent woman a
my future and as an independent woman a mom a wife and a corporate event planner
mom a wife and a corporate event planner
mom a wife and a corporate event planner that prospect is pretty terrifying
that prospect is pretty terrifying
that prospect is pretty terrifying incredibly terrifying so except prepare
incredibly terrifying so except prepare
incredibly terrifying so except prepare cope it isn’t a life mantra it’s more
cope it isn’t a life mantra it’s more
cope it isn’t a life mantra it’s more like an ongoing daily activity that can
like an ongoing daily activity that can
like an ongoing daily activity that can go from except a coat back to accept
go from except a coat back to accept
go from except a coat back to accept without even a moment of preparation
without even a moment of preparation
without even a moment of preparation some days all I do is cope but let me
some days all I do is cope but let me
some days all I do is cope but let me first tackle acceptance loss of sight is
first tackle acceptance loss of sight is
first tackle acceptance loss of sight is inevitable
inevitable
inevitable I could slow the progression of the
I could slow the progression of the
I could slow the progression of the disease down by taking high doses of
disease down by taking high doses of
disease down by taking high doses of vitamin A but I’ve made a conscious
vitamin A but I’ve made a conscious
vitamin A but I’ve made a conscious choice to lose my eyesight rather than
choice to lose my eyesight rather than
choice to lose my eyesight rather than my liver I kind of need the ladder to
my liver I kind of need the ladder to
my liver I kind of need the ladder to survive and so in that Quay ssin
survive and so in that Quay ssin
survive and so in that Quay ssin eyesight really just becomes a luxury RP
eyesight really just becomes a luxury RP
eyesight really just becomes a luxury RP cannot be cured it can only be managed
cannot be cured it can only be managed
cannot be cured it can only be managed now I see some sad faces no no sad this
now I see some sad faces no no sad this
now I see some sad faces no no sad this is not sad because there are actually
is not sad because there are actually
is not sad because there are actually some really positive things about going
some really positive things about going
some really positive things about going blind too
blind too
blind too right so for example I have great
right so for example I have great
right so for example I have great memorization and listening skills my
memorization and listening skills my
memorization and listening skills my trainer only makes me do one set of
trainer only makes me do one set of
trainer only makes me do one set of stairs instead of two and I always have
stairs instead of two and I always have
stairs instead of two and I always have a designated driver
there’s also another dynamic here it’s
there’s also another dynamic here it’s it’s being a woman being the only woman
it’s being a woman being the only woman
it’s being a woman being the only woman in my family see I’ve grown up watching
in my family see I’ve grown up watching
in my family see I’ve grown up watching the men of my family become more and
the men of my family become more and
the men of my family become more and more reliant on their wives and their
more reliant on their wives and their
more reliant on their wives and their wives being more than happy to be relied
wives being more than happy to be relied
wives being more than happy to be relied on in my case my husband tries so hard
on in my case my husband tries so hard
on in my case my husband tries so hard to remember to take my hand if it’s dark
to remember to take my hand if it’s dark
to remember to take my hand if it’s dark to wait for me as I maneuver around a
to wait for me as I maneuver around a
to wait for me as I maneuver around a new environment if somebody needs my
new environment if somebody needs my
new environment if somebody needs my attention he makes sure they have my
attention he makes sure they have my
attention he makes sure they have my attention and I love him so much for so
attention and I love him so much for so
attention and I love him so much for so many reasons but one of them is because
many reasons but one of them is because
many reasons but one of them is because he actually chose to marry me
he actually chose to marry me
he actually chose to marry me knowing that this was going to be our
knowing that this was going to be our
knowing that this was going to be our future but then sometimes he forgets and
future but then sometimes he forgets and
future but then sometimes he forgets and I trip over a curb or I kick one of
I trip over a curb or I kick one of
I trip over a curb or I kick one of those damn wet floor signs across a
those damn wet floor signs across a
those damn wet floor signs across a restaurant or my face violently collides
restaurant or my face violently collides
restaurant or my face violently collides with a light pole and I don’t blame him
with a light pole and I don’t blame him
with a light pole and I don’t blame him he knows that I want to do as much as
he knows that I want to do as much as
he knows that I want to do as much as possible on my own but I can’t help
possible on my own but I can’t help
possible on my own but I can’t help getting a little bit of satisfaction
getting a little bit of satisfaction
getting a little bit of satisfaction when I have to go to the hospital forget
when I have to go to the hospital forget
when I have to go to the hospital forget another black eye and he has to answer
another black eye and he has to answer
another black eye and he has to answer those are you abusing your wife
those are you abusing your wife
those are you abusing your wife questions
questions
questions because when you tell them that you ran
because when you tell them that you ran
because when you tell them that you ran face-first into a parking meter somehow
face-first into a parking meter somehow
face-first into a parking meter somehow that’s just not credible so I learned to
that’s just not credible so I learned to
that’s just not credible so I learned to accept more help from him and more help
accept more help from him and more help
accept more help from him and more help from my friends I also had to learn how
from my friends I also had to learn how
from my friends I also had to learn how to accept more help from my co-workers
to accept more help from my co-workers
to accept more help from my co-workers which was without a doubt the hardest
which was without a doubt the hardest
which was without a doubt the hardest ask I’ve ever had to make
ask I’ve ever had to make
ask I’ve ever had to make you see work is where you’re supposed to
you see work is where you’re supposed to
you see work is where you’re supposed to be the most independent and I take that
be the most independent and I take that
be the most independent and I take that so seriously so seriously in fact that
so seriously so seriously in fact that
so seriously so seriously in fact that most of my co-workers probably have no
most of my co-workers probably have no
most of my co-workers probably have no idea until they see this about it at all
idea until they see this about it at all
idea until they see this about it at all I learned how to delegate so that I
I learned how to delegate so that I
I learned how to delegate so that I didn’t end up in swarms of people or a
didn’t end up in swarms of people or a
didn’t end up in swarms of people or a room under construction I learned to not
room under construction I learned to not
room under construction I learned to not scream x-rated expletives when I ran
scream x-rated expletives when I ran
scream x-rated expletives when I ran into a desk or a door or most memorably
into a desk or a door or most memorably
into a desk or a door or most memorably an unmovable cement bench
an unmovable cement bench
an unmovable cement bench no matter the bruises that I earned I
no matter the bruises that I earned I
no matter the bruises that I earned I learned that the people I could rely on
learned that the people I could rely on
learned that the people I could rely on who just take my hand and say now let’s
who just take my hand and say now let’s
who just take my hand and say now let’s go so that I could achieve more do more
go so that I could achieve more do more
go so that I could achieve more do more and be more so except prepare cope
it’s a little easier to wrap my head
it’s a little easier to wrap my head around acceptance when I’m focusing on
around acceptance when I’m focusing on
around acceptance when I’m focusing on the preparation part of the equation so
the preparation part of the equation so
the preparation part of the equation so most days I spend a lot of time
most days I spend a lot of time
most days I spend a lot of time preparing in some way usually it’s a
preparing in some way usually it’s a
preparing in some way usually it’s a short-term prep such as figuring out the
short-term prep such as figuring out the
short-term prep such as figuring out the layout of the building or trying to get
layout of the building or trying to get
layout of the building or trying to get from point A to point B on city streets
from point A to point B on city streets
from point A to point B on city streets I find that it makes me habitual lead
I find that it makes me habitual lead
I find that it makes me habitual lead late sometimes I’m just roaming around
late sometimes I’m just roaming around
late sometimes I’m just roaming around the first floor trying to find the
the first floor trying to find the
the first floor trying to find the stairs to a second floor meeting room
stairs to a second floor meeting room
stairs to a second floor meeting room I’ve also learned that I had to prepare
I’ve also learned that I had to prepare
I’ve also learned that I had to prepare for the future
for the future
for the future see I’m not so naive to think that I can
see I’m not so naive to think that I can
see I’m not so naive to think that I can be an event planner for forever as my
be an event planner for forever as my
be an event planner for forever as my eyesight continues to deteriorate I know
eyesight continues to deteriorate I know
eyesight continues to deteriorate I know that it will be time to move on so I
that it will be time to move on so I
that it will be time to move on so I went back to school I got my MBA I got
went back to school I got my MBA I got
went back to school I got my MBA I got my coaching certification also that I
my coaching certification also that I
my coaching certification also that I had another opportunity at a second
had another opportunity at a second
had another opportunity at a second career and and you know depending on
career and and you know depending on
career and and you know depending on whatever that wanted to be I’m starting
whatever that wanted to be I’m starting
whatever that wanted to be I’m starting to learn Braille so that I can continue
to learn Braille so that I can continue
to learn Braille so that I can continue to read I work on my husband about
to read I work on my husband about
to read I work on my husband about living somewhere walkable he works on me
living somewhere walkable he works on me
living somewhere walkable he works on me about getting a guide dog for him or me
about getting a guide dog for him or me
about getting a guide dog for him or me I’m not sure but all of those things
I’m not sure but all of those things
I’m not sure but all of those things have helped me to prepare for the future
except prepare cope when you can’t see
except prepare cope when you can’t see there are plenty of things to be afraid
there are plenty of things to be afraid
there are plenty of things to be afraid of both big and small I am afraid to
of both big and small I am afraid to
of both big and small I am afraid to walk it in large crowds because I am
walk it in large crowds because I am
walk it in large crowds because I am slow I am trying not to trip over you
slow I am trying not to trip over you
slow I am trying not to trip over you and I’m trying not to trip over my feet
and I’m trying not to trip over my feet
and I’m trying not to trip over my feet and fall on the floor most people
and fall on the floor most people
and fall on the floor most people unfortunately don’t have patience for
unfortunately don’t have patience for
unfortunately don’t have patience for that and I have been called every name
that and I have been called every name
that and I have been called every name in the book and I can tell you after
in the book and I can tell you after
in the book and I can tell you after years of exhaustive research bitch is
years of exhaustive research bitch is
years of exhaustive research bitch is definitely the most favorite it’s okay
definitely the most favorite it’s okay
definitely the most favorite it’s okay because I tell myself that I’m a
because I tell myself that I’m a
because I tell myself that I’m a trendsetter and I’m just changing the
trendsetter and I’m just changing the
trendsetter and I’m just changing the definition of that word
I’m also afraid to do new things on my
I’m also afraid to do new things on my own by myself this summer I had an
own by myself this summer I had an
own by myself this summer I had an opportunity to work in New York a short
opportunity to work in New York a short
opportunity to work in New York a short three blocks away from the 9/11 memorial
three blocks away from the 9/11 memorial
three blocks away from the 9/11 memorial I hadn’t been back since 2002 and I
I hadn’t been back since 2002 and I
I hadn’t been back since 2002 and I desperately wanted to go it took me two
desperately wanted to go it took me two
desperately wanted to go it took me two hours of internal debate checking with
hours of internal debate checking with
hours of internal debate checking with the concierge checking GPS all to gain
the concierge checking GPS all to gain
the concierge checking GPS all to gain the courage to walk out the front door
the courage to walk out the front door
the courage to walk out the front door and what I want you to understand is I
and what I want you to understand is I
and what I want you to understand is I had nothing to do with finding the
had nothing to do with finding the
had nothing to do with finding the memorial even I can see that from three
memorial even I can see that from three
memorial even I can see that from three blocks away it had to do with the fear
blocks away it had to do with the fear
blocks away it had to do with the fear of physically injuring myself by not
of physically injuring myself by not
of physically injuring myself by not being able to see around construction or
being able to see around construction or
being able to see around construction or falling off a curb into traffic or worse
falling off a curb into traffic or worse
falling off a curb into traffic or worse yet a bike messenger I’m pretty sure
yet a bike messenger I’m pretty sure
yet a bike messenger I’m pretty sure that they have a no mercy rule in the
that they have a no mercy rule in the
that they have a no mercy rule in the end I believed I could do it I did it
end I believed I could do it I did it
end I believed I could do it I did it and I loved every minute of that
and I loved every minute of that
and I loved every minute of that experience anxiety would be everywhere
experience anxiety would be everywhere
experience anxiety would be everywhere if I allowed it to be find myself in a
if I allowed it to be find myself in a
if I allowed it to be find myself in a dark room I wasn’t expecting terrifying
dark room I wasn’t expecting terrifying
dark room I wasn’t expecting terrifying having my wedding ring fall off my
having my wedding ring fall off my
having my wedding ring fall off my finger and not be able to find it silly
finger and not be able to find it silly
finger and not be able to find it silly but terrifying having to have one of my
but terrifying having to have one of my
but terrifying having to have one of my teenage driver daughters drive me
teenage driver daughters drive me
teenage driver daughters drive me somewhere after dark not silly
somewhere after dark not silly
somewhere after dark not silly terrifying for you and for me
and lastly coping with fear is me
and lastly coping with fear is me standing on this stage telling the world
standing on this stage telling the world
standing on this stage telling the world my biggest secret when all my life I’ve
my biggest secret when all my life I’ve
my biggest secret when all my life I’ve been told not to for the fear of losing
been told not to for the fear of losing
been told not to for the fear of losing my job my insurance my choices and my
my job my insurance my choices and my
my job my insurance my choices and my independence we all have something I’m
independence we all have something I’m
independence we all have something I’m certainly not special maybe yours is in
certainly not special maybe yours is in
certainly not special maybe yours is in physical maybe it’s emotional or
physical maybe it’s emotional or
physical maybe it’s emotional or psychological maybe you’re dealing with
psychological maybe you’re dealing with
psychological maybe you’re dealing with moving to a new country or you’re
moving to a new country or you’re
moving to a new country or you’re dealing with the loss of a spouse or a
dealing with the loss of a spouse or a
dealing with the loss of a spouse or a sick child I think that we can all fry
sick child I think that we can all fry
sick child I think that we can all fry with just a little belief see I believe
with just a little belief see I believe
with just a little belief see I believe that acceptance of my limitations is not
that acceptance of my limitations is not
that acceptance of my limitations is not the same as resigning to them I believe
the same as resigning to them I believe
the same as resigning to them I believe that preparation helps to eliminate
that preparation helps to eliminate
that preparation helps to eliminate unnecessary risks and I believe that
unnecessary risks and I believe that
unnecessary risks and I believe that coping with fear is more than just
coping with fear is more than just
coping with fear is more than just recognizing the fear but continuing on
recognizing the fear but continuing on
recognizing the fear but continuing on despite it I believe that I’ve done what
despite it I believe that I’ve done what
despite it I believe that I’ve done what I can to prepare for the future I
I can to prepare for the future I
I can to prepare for the future I believe that I’ve surrounded myself with
believe that I’ve surrounded myself with
believe that I’ve surrounded myself with people who love me no matter what comes
people who love me no matter what comes
people who love me no matter what comes next and I believe that I’m up to any
next and I believe that I’m up to any
next and I believe that I’m up to any challenge with a little accept prepare
challenge with a little accept prepare
challenge with a little accept prepare and cope I refuse to just exist in life
and cope I refuse to just exist in life
and cope I refuse to just exist in life I will continue to take the risk because
I will continue to take the risk because
I will continue to take the risk because I know I believe that I can I will
I know I believe that I can I will
I know I believe that I can I will experience everything that life has to
experience everything that life has to
experience everything that life has to give me whether it takes me massive
give me whether it takes me massive
give me whether it takes me massive amount of preparation or it takes me
amount of preparation or it takes me
amount of preparation or it takes me hours to build the courage just to walk
hours to build the courage just to walk
hours to build the courage just to walk out the door and I will experience it
out the door and I will experience it
out the door and I will experience it not by how you see it but by how I see
not by how you see it but by how I see
not by how you see it but by how I see it accept
it accept
it accept prepare cope and believe
prepare cope and believe
prepare cope and believe to more than just exist when everything
to more than just exist when everything
to more than just exist when everything changes but do me a favor and watch out
changes but do me a favor and watch out
changes but do me a favor and watch out for bike messengers thank you
”
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