I am a storyteller married to a man who forgot his life
forgot his life
forgot his life my husband’s died in surgery but his
my husband’s died in surgery but his
my husband’s died in surgery but his body remained alive how does that happen
body remained alive how does that happen
body remained alive how does that happen that’s what I wondered too and I
that’s what I wondered too and I
that’s what I wondered too and I wondered about it for years and years
wondered about it for years and years
wondered about it for years and years this is what that looked like from my
this is what that looked like from my
this is what that looked like from my point of view his identity that patina
point of view his identity that patina
point of view his identity that patina of personality that we grow to know
of personality that we grow to know
of personality that we grow to know along with all of his memories ended
along with all of his memories ended
along with all of his memories ended we’re history used to be there was a
we’re history used to be there was a
we’re history used to be there was a wide-eyed innocent boy in a six-foot
wide-eyed innocent boy in a six-foot
wide-eyed innocent boy in a six-foot four-man body this is what it looked
four-man body this is what it looked
four-man body this is what it looked like from his point of view he woke up
like from his point of view he woke up
like from his point of view he woke up inside a world that he no longer
inside a world that he no longer
inside a world that he no longer recognized absolutely everything around
recognized absolutely everything around
recognized absolutely everything around him was new when he came out of surgery
him was new when he came out of surgery
him was new when he came out of surgery he was 40 pounds lighter and without
he was 40 pounds lighter and without
he was 40 pounds lighter and without strength without vigor without intention
strength without vigor without intention
strength without vigor without intention without will without all of the things
without will without all of the things
without will without all of the things that make us actionable in the world
that make us actionable in the world
that make us actionable in the world instead what he had was something called
instead what he had was something called
instead what he had was something called aphasia and the loss of language he did
aphasia and the loss of language he did
aphasia and the loss of language he did not have the ability to connect with
not have the ability to connect with
not have the ability to connect with anyone around him some of you might
anyone around him some of you might
anyone around him some of you might think that this is a horrible thing to
think that this is a horrible thing to
think that this is a horrible thing to experience all of a sudden a
experience all of a sudden a
experience all of a sudden a relationship where there isn’t the kind
relationship where there isn’t the kind
relationship where there isn’t the kind of things that we think relating can be
of things that we think relating can be
of things that we think relating can be a mutual history a shared sense of
a mutual history a shared sense of
a mutual history a shared sense of values a passionate connection I’m here
values a passionate connection I’m here
values a passionate connection I’m here to tell you that this event was
to tell you that this event was
to tell you that this event was something that I never ever could have
something that I never ever could have
something that I never ever could have predicted in my life and also that it
predicted in my life and also that it
predicted in my life and also that it was the most wondrous event that ever
was the most wondrous event that ever
was the most wondrous event that ever could have happened to me I wrote this
could have happened to me I wrote this
could have happened to me I wrote this story in a memoir called wondering who
story in a memoir called wondering who
story in a memoir called wondering who you are and I’m not going to talk about
you are and I’m not going to talk about
you are and I’m not going to talk about all of the details that are in that
all of the details that are in that
all of the details that are in that story about his rare cancer
story about his rare cancer
story about his rare cancer and the surgeries that he had and the
and the surgeries that he had and the
and the surgeries that he had and the treatments that followed instead I
treatments that followed instead I
treatments that followed instead I really want to focus on something else
really want to focus on something else
really want to focus on something else which is the transformation that was so
which is the transformation that was so
which is the transformation that was so incredible that my husband went through
incredible that my husband went through
incredible that my husband went through and how it caused me to change my
and how it caused me to change my
and how it caused me to change my perception of who I am and who I might
perception of who I am and who I might
perception of who I am and who I might become in the world
become in the world
become in the world when Richard woke up he wasn’t able to
when Richard woke up he wasn’t able to
when Richard woke up he wasn’t able to speak but he had a pen and a piece of
speak but he had a pen and a piece of
speak but he had a pen and a piece of paper and he kept writing the same
paper and he kept writing the same
paper and he kept writing the same things over and over again on that paper
things over and over again on that paper
things over and over again on that paper and they were who is here who has been
and they were who is here who has been
and they were who is here who has been here and who is coming now in intensive
here and who is coming now in intensive
here and who is coming now in intensive care I saw him in bed I walked across
care I saw him in bed I walked across
care I saw him in bed I walked across the room and took his hand and in that
the room and took his hand and in that
the room and took his hand and in that gesture he knew that we were bonded that
gesture he knew that we were bonded that
gesture he knew that we were bonded that was the first sign that he had that
was the first sign that he had that
was the first sign that he had that someone outside of him belonged to him
someone outside of him belonged to him
someone outside of him belonged to him now in our society we call these things
now in our society we call these things
now in our society we call these things injuries or illnesses but the thing that
injuries or illnesses but the thing that
injuries or illnesses but the thing that I questioned the thing that I am curious
I questioned the thing that I am curious
I questioned the thing that I am curious about if it is a person comes in and
about if it is a person comes in and
about if it is a person comes in and shatters your idea of what a limitation
shatters your idea of what a limitation
shatters your idea of what a limitation is then is that really a constraint or
is then is that really a constraint or
is then is that really a constraint or is that a transformation of what your
is that a transformation of what your
is that a transformation of what your experience is
experience is
experience is I became insanely curious about what was
I became insanely curious about what was
I became insanely curious about what was happening to him and that led me to open
happening to him and that led me to open
happening to him and that led me to open up to the experience that Richard was
up to the experience that Richard was
up to the experience that Richard was having as he went through his brain
having as he went through his brain
having as he went through his brain injury this was a kind of brain injury
injury this was a kind of brain injury
injury this was a kind of brain injury that caused of him to not only forget
that caused of him to not only forget
that caused of him to not only forget his long term memory and his history of
his long term memory and his history of
his long term memory and his history of his life but his short term memory so he
his life but his short term memory so he
his life but his short term memory so he had difficulty with forming new
had difficulty with forming new
had difficulty with forming new impressions of what was happening in
impressions of what was happening in
impressions of what was happening in life and he didn’t just have a problem
life and he didn’t just have a problem
life and he didn’t just have a problem with learning things you know that we’d
with learning things you know that we’d
with learning things you know that we’d have to repeat a dozen times he would
have to repeat a dozen times he would
have to repeat a dozen times he would have to learn them
have to learn them
have to learn them thousands of times over and over and
thousands of times over and over and
thousands of times over and over and over again when he first went out into
over again when he first went out into
over again when he first went out into the world
the world
the world this formerly really gregarious magnetic
this formerly really gregarious magnetic
this formerly really gregarious magnetic take charge intensely verbal man could
take charge intensely verbal man could
take charge intensely verbal man could hardly stand to be out for more than 10
hardly stand to be out for more than 10
hardly stand to be out for more than 10 minutes before he had to come back again
minutes before he had to come back again
minutes before he had to come back again so he came back to the cave and I sat
so he came back to the cave and I sat
so he came back to the cave and I sat there with him throughout his recovery
there with him throughout his recovery
there with him throughout his recovery process and while I thought I would
process and while I thought I would
process and while I thought I would write an a’ journal and a couple of
write an a’ journal and a couple of
write an a’ journal and a couple of things happened in that kind of deep
things happened in that kind of deep
things happened in that kind of deep quiet and the first one was I started to
quiet and the first one was I started to
quiet and the first one was I started to cry and I cried a lot when I cried for
cry and I cried a lot when I cried for
cry and I cried a lot when I cried for the lost relationship that had ended
the lost relationship that had ended
the lost relationship that had ended when we went into surgery the second
when we went into surgery the second
when we went into surgery the second thing that happened was I began to
thing that happened was I began to
thing that happened was I began to question what my life might be like if I
question what my life might be like if I
question what my life might be like if I could be as new and fresh as Richard was
could be as new and fresh as Richard was
could be as new and fresh as Richard was what would it be like if I didn’t hold
what would it be like if I didn’t hold
what would it be like if I didn’t hold on to any ideas of who I was I don’t
on to any ideas of who I was I don’t
on to any ideas of who I was I don’t want to deny the grief that I felt and I
want to deny the grief that I felt and I
want to deny the grief that I felt and I also don’t want to deny the grief better
also don’t want to deny the grief better
also don’t want to deny the grief better than teenage children felt because they
than teenage children felt because they
than teenage children felt because they lost the father that they had always
lost the father that they had always
lost the father that they had always known in that moment but something else
known in that moment but something else
known in that moment but something else happened to which is that we began to
happened to which is that we began to
happened to which is that we began to recognize that there was another
recognize that there was another
recognize that there was another possibility that was ‘event evident even
possibility that was ‘event evident even
possibility that was ‘event evident even amongst the grief which is that we were
amongst the grief which is that we were
amongst the grief which is that we were losing this idea that we know who we are
losing this idea that we know who we are
losing this idea that we know who we are and that we know who were meeting in
and that we know who were meeting in
and that we know who were meeting in every moment as we come across each
every moment as we come across each
every moment as we come across each other and in that were some really
other and in that were some really
other and in that were some really really rich possibilities we noticed
really rich possibilities we noticed
really rich possibilities we noticed that we were suffering because we miss
that we were suffering because we miss
that we were suffering because we miss the former man but Richard wasn’t
the former man but Richard wasn’t
the former man but Richard wasn’t suffering because he didn’t have any
suffering because he didn’t have any
suffering because he didn’t have any idea about holding on to the past so in
idea about holding on to the past so in
idea about holding on to the past so in that was another possibility that the
that was another possibility that the
that was another possibility that the narrative that we had constructed about
narrative that we had constructed about
narrative that we had constructed about our life didn’t need to remain so fixed
our life didn’t need to remain so fixed
our life didn’t need to remain so fixed that this once-upon-a-time story that we
that this once-upon-a-time story that we
that this once-upon-a-time story that we tell about who we taught each other our
tell about who we taught each other our
tell about who we taught each other our didn’t need to be the thing that we
didn’t need to be the thing that we
didn’t need to be the thing that we focused on all the time when I asked my
focused on all the time when I asked my
focused on all the time when I asked my husband what he wanted to do he didn’t
husband what he wanted to do he didn’t
husband what he wanted to do he didn’t remember what he liked to do and so this
remember what he liked to do and so this
remember what he liked to do and so this gave us the opportunity to try many many
gave us the opportunity to try many many
gave us the opportunity to try many many things over and over again we kind of
things over and over again we kind of
things over and over again we kind of became at 40 years old like kids and we
became at 40 years old like kids and we
became at 40 years old like kids and we started to talk about ideas and food and
started to talk about ideas and food and
started to talk about ideas and food and experiences that we might like to try
experiences that we might like to try
experiences that we might like to try again so one of the things that happened
again so one of the things that happened
again so one of the things that happened is about a year so after the hospital I
is about a year so after the hospital I
is about a year so after the hospital I decided that I wanted to ask him out on
decided that I wanted to ask him out on
decided that I wanted to ask him out on a date this was we had met when we were
a date this was we had met when we were
a date this was we had met when we were teenagers and this was the kind of thing
teenagers and this was the kind of thing
teenagers and this was the kind of thing that we did when we were early in our
that we did when we were early in our
that we did when we were early in our dating experience so Whichard still
dating experience so Whichard still
dating experience so Whichard still didn’t have very much language at that
didn’t have very much language at that
didn’t have very much language at that time so one of the things that he had to
time so one of the things that he had to
time so one of the things that he had to do was to prepare for the date by
do was to prepare for the date by
do was to prepare for the date by writing down questions on a piece of
writing down questions on a piece of
writing down questions on a piece of paper if he didn’t do this then we would
paper if he didn’t do this then we would
paper if he didn’t do this then we would sit there in complete silence the whole
sit there in complete silence the whole
sit there in complete silence the whole time because he wouldn’t know anything
time because he wouldn’t know anything
time because he wouldn’t know anything about how to relate so he would prepare
about how to relate so he would prepare
about how to relate so he would prepare and write these beautiful questions on a
and write these beautiful questions on a
and write these beautiful questions on a piece of paper things that were like ask
piece of paper things that were like ask
piece of paper things that were like ask Sonya what her dreams are or where would
Sonya what her dreams are or where would
Sonya what her dreams are or where would she like to travel to or what is her
she like to travel to or what is her
she like to travel to or what is her experience of work in her life right now
experience of work in her life right now
experience of work in her life right now so we we went out on this beautiful date
so we we went out on this beautiful date
so we we went out on this beautiful date we went to a restaurant that we loved we
we went to a restaurant that we loved we
we went to a restaurant that we loved we like desert dates and we ordered a piece
like desert dates and we ordered a piece
like desert dates and we ordered a piece of coconut pie to share and like the
of coconut pie to share and like the
of coconut pie to share and like the generous man that he used to be before
generous man that he used to be before
generous man that he used to be before the brain injury he gave me the final
the brain injury he gave me the final
the brain injury he gave me the final bite of the pie so I delightfully
bite of the pie so I delightfully
bite of the pie so I delightfully consumed it it was right there on the
consumed it it was right there on the
consumed it it was right there on the table in front of us and he picked up
table in front of us and he picked up
table in front of us and he picked up the plate and licked it clean so I was
the plate and licked it clean so I was
the plate and licked it clean so I was embarrassed in that moment and I was
embarrassed in that moment and I was
embarrassed in that moment and I was also upset because I thought maybe I
also upset because I thought maybe I
also upset because I thought maybe I wasn’t so good at actually preparing him
wasn’t so good at actually preparing him
wasn’t so good at actually preparing him for what polite company expects in a
for what polite company expects in a
for what polite company expects in a restaurant um but then something else
restaurant um but then something else
restaurant um but then something else happened to me which I started to think
happened to me which I started to think
happened to me which I started to think about what if I gave
about what if I gave
about what if I gave myself permission to lick the plate I
myself permission to lick the plate I
myself permission to lick the plate I couldn’t do it then in the restaurant
couldn’t do it then in the restaurant
couldn’t do it then in the restaurant but I tried it later at home
but I tried it later at home
but I tried it later at home and it was freaking fantastic she I
and it was freaking fantastic she I
and it was freaking fantastic she I really recommend you try that sometime
really recommend you try that sometime
really recommend you try that sometime um you know and this sounds like such a
um you know and this sounds like such a
um you know and this sounds like such a small story but it was the beginning of
small story but it was the beginning of
small story but it was the beginning of a lot of taking a part of obligations
a lot of taking a part of obligations
a lot of taking a part of obligations and beliefs and attitudes that we had
and beliefs and attitudes that we had
and beliefs and attitudes that we had held on to that were just kind of
held on to that were just kind of
held on to that were just kind of cursory ways there were just ways that
cursory ways there were just ways that
cursory ways there were just ways that we thought about this is how we do life
we thought about this is how we do life
we thought about this is how we do life and so Richards identity changes and his
and so Richards identity changes and his
and so Richards identity changes and his transformation began to dismantle
transformation began to dismantle
transformation began to dismantle everything about the way that I thought
everything about the way that I thought
everything about the way that I thought about myself
he forgot things over and over and he
he forgot things over and over and he was not burdened at all by his missteps
was not burdened at all by his missteps
was not burdened at all by his missteps in the way that I was when I years later
in the way that I was when I years later
in the way that I was when I years later I finally got ready to write a book
I finally got ready to write a book
I finally got ready to write a book about our experiences and at that time I
about our experiences and at that time I
about our experiences and at that time I knew that if I was going to write about
knew that if I was going to write about
knew that if I was going to write about these things I was going to have to
these things I was going to have to
these things I was going to have to write about some really big mistakes
write about some really big mistakes
write about some really big mistakes that we had made early in our marriage
that we had made early in our marriage
that we had made early in our marriage and that they would be difficult to
and that they would be difficult to
and that they would be difficult to write about and so I went to him and
write about and so I went to him and
write about and so I went to him and asked his permission to write the story
asked his permission to write the story
asked his permission to write the story and after some consideration and what he
and after some consideration and what he
and after some consideration and what he said to me was I have no reputation to
said to me was I have no reputation to
said to me was I have no reputation to protect and that was an incredible gift
protect and that was an incredible gift
protect and that was an incredible gift to me as the woman who had made many of
to me as the woman who had made many of
to me as the woman who had made many of those mistakes and also as a writer and
those mistakes and also as a writer and
those mistakes and also as a writer and the artist in the world that that he
the artist in the world that that he
the artist in the world that that he though he cared about the story he
though he cared about the story he
though he cared about the story he wasn’t trying to protect his identity
wasn’t trying to protect his identity
wasn’t trying to protect his identity and who he was in that moment so some of
and who he was in that moment so some of
and who he was in that moment so some of you already know what it’s like to be in
you already know what it’s like to be in
you already know what it’s like to be in a relationship with forgetting maybe you
a relationship with forgetting maybe you
a relationship with forgetting maybe you have parents or grandparents with
have parents or grandparents with
have parents or grandparents with dementia maybe you’ve had a night with
dementia maybe you’ve had a night with
dementia maybe you’ve had a night with alcohol that you came back not
alcohol that you came back not
alcohol that you came back not remembering everything that happened
remembering everything that happened
remembering everything that happened maybe you’ve had lovers or friends
maybe you’ve had lovers or friends
maybe you’ve had lovers or friends who’ve had extreme illnesses and haven’t
who’ve had extreme illnesses and haven’t
who’ve had extreme illnesses and haven’t been able to go through life the same
been able to go through life the same
been able to go through life the same afterwards maybe you’ve had
afterwards maybe you’ve had
afterwards maybe you’ve had post-traumatic stress which can
post-traumatic stress which can
post-traumatic stress which can sometimes block the memory and cause
sometimes block the memory and cause
sometimes block the memory and cause forgetting or maybe you’re in the middle
forgetting or maybe you’re in the middle
forgetting or maybe you’re in the middle of some kind of transformation yourself
of some kind of transformation yourself
of some kind of transformation yourself and that causes you difficulty sometimes
and that causes you difficulty sometimes
and that causes you difficulty sometimes with claiming what that is in the world
with claiming what that is in the world
with claiming what that is in the world and it’s been my experience as someone
and it’s been my experience as someone
and it’s been my experience as someone in relationship with forgetting for some
in relationship with forgetting for some
in relationship with forgetting for some time is that we’re all going through big
time is that we’re all going through big
time is that we’re all going through big and little deaths all over the time
and little deaths all over the time
and little deaths all over the time these are transformations that continue
these are transformations that continue
these are transformations that continue to happen with us Richard didn’t just
to happen with us Richard didn’t just
to happen with us Richard didn’t just inspire me his brain changes altered my
inspire me his brain changes altered my
inspire me his brain changes altered my own mind and with that this is what I
own mind and with that this is what I
own mind and with that this is what I learned we are all making this up
learned we are all making this up
learned we are all making this up our brain imposes a narrative over our
our brain imposes a narrative over our
our brain imposes a narrative over our life events so that we can have this
life events so that we can have this
life events so that we can have this kind of continuity and understand who
kind of continuity and understand who
kind of continuity and understand who each other is and who ourselves are that
each other is and who ourselves are that
each other is and who ourselves are that question that Richard asked who is here
question that Richard asked who is here
question that Richard asked who is here is the question that has been asked by
is the question that has been asked by
is the question that has been asked by philosophers in every era and I think
philosophers in every era and I think
philosophers in every era and I think one of the things that has allowed him
one of the things that has allowed him
one of the things that has allowed him to get closer in response to it is
to get closer in response to it is
to get closer in response to it is really having no attachment about what
really having no attachment about what
really having no attachment about what the answer is to that in every moment
the answer is to that in every moment
the answer is to that in every moment even I was shocked
even I was shocked
even I was shocked years and years after the brain injury
years and years after the brain injury
years and years after the brain injury when I finally woke up to and realized
when I finally woke up to and realized
when I finally woke up to and realized that not for a moment had I actually
that not for a moment had I actually
that not for a moment had I actually considered who Richard might have been
considered who Richard might have been
considered who Richard might have been if I had have allowed him to develop in
if I had have allowed him to develop in
if I had have allowed him to develop in his natural way instead I had tried to
his natural way instead I had tried to
his natural way instead I had tried to make him into the husband that he was
make him into the husband that he was
make him into the husband that he was before I gave him his history I gave him
before I gave him his history I gave him
before I gave him his history I gave him his relationship with us I showed him
his relationship with us I showed him
his relationship with us I showed him photographs we went through his children
photographs we went through his children
photographs we went through his children bringing music to him we did all of
bringing music to him we did all of
bringing music to him we did all of these ways to try and construct a
these ways to try and construct a
these ways to try and construct a lineage for
lineage for
lineage for that he could connect to but I don’t
that he could connect to but I don’t
that he could connect to but I don’t know who he might have been if that
know who he might have been if that
know who he might have been if that hadn’t happened so of course next up the
hadn’t happened so of course next up the
hadn’t happened so of course next up the question is who would you be if you
question is who would you be if you
question is who would you be if you didn’t hold on to the ideas of yourself
didn’t hold on to the ideas of yourself
didn’t hold on to the ideas of yourself so tightly in a world of rising
so tightly in a world of rising
so tightly in a world of rising nationalism where we disrespect people
nationalism where we disrespect people
nationalism where we disrespect people for being other than us in the kinds of
for being other than us in the kinds of
for being other than us in the kinds of suffering that we have in our world
suffering that we have in our world
suffering that we have in our world there are enormous repercussions for
there are enormous repercussions for
there are enormous repercussions for holding on to the narrative idea of who
holding on to the narrative idea of who
holding on to the narrative idea of who we are all of the time
we are all of the time
we are all of the time that makes us fixed inside our own story
that makes us fixed inside our own story
that makes us fixed inside our own story and people who identify by this one
and people who identify by this one
and people who identify by this one story become rigid and that’s how that’s
story become rigid and that’s how that’s
story become rigid and that’s how that’s a very beginning of how we become
a very beginning of how we become
a very beginning of how we become polarized that’s the very beginning of
polarized that’s the very beginning of
polarized that’s the very beginning of how we start to argue for territory and
how we start to argue for territory and
how we start to argue for territory and status and power so there’s another
status and power so there’s another
status and power so there’s another possibility here too which is that
possibility here too which is that
possibility here too which is that instead we suspend our fixed notions of
instead we suspend our fixed notions of
instead we suspend our fixed notions of ourselves we overcome antipathy for
ourselves we overcome antipathy for
ourselves we overcome antipathy for others differences and in the moment we
others differences and in the moment we
others differences and in the moment we stay open to who that other that we
stay open to who that other that we
stay open to who that other that we think that we know might be becoming
think that we know might be becoming
think that we know might be becoming [Applause]
[Applause]
[Applause] when life usurps your ideas for it
when life usurps your ideas for it
when life usurps your ideas for it wonder is what is possible rather than
wonder is what is possible rather than
wonder is what is possible rather than fear wonder takes what’s strange and
fear wonder takes what’s strange and
fear wonder takes what’s strange and makes it beautiful we can hold on to
makes it beautiful we can hold on to
makes it beautiful we can hold on to these fixed ideas of ourselves or we can
these fixed ideas of ourselves or we can
these fixed ideas of ourselves or we can wonder about who we are and let go of
wonder about who we are and let go of
wonder about who we are and let go of what no longer serves us the art of
what no longer serves us the art of
what no longer serves us the art of wonder is about being alive right here
wonder is about being alive right here
wonder is about being alive right here we are alive right here at the edge of
we are alive right here at the edge of
we are alive right here at the edge of existence isn’t that incredible thank
existence isn’t that incredible thank
existence isn’t that incredible thank you
you
you you
”
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