Brain Injury Dialogs

I do not have a label on my forehead
that says hey Brendan Kirk guy Cummings maybe people don’t know a person was who
has had their head cracked a bit is as of deficits other people don’t have it
is just not obvious I had very very thick bangs until I was
18 and then I got my eyebrow pierced because I wanted I was tired of feeling
crappy about my self you know and I wanted something in this area of my face
to kind of show off and the next day I cut my bangs off and that was like the
beginning of me kind of figuring out how to deal with the way I look I can remember looking into the mirror
and just looking trying to look into the pools of my eyes to see if I could see
somewhere down inside my soul if I could recognize me because I couldn’t
recognize me I was totally a different person confusion disorientation seizures maybe
I’m dealing with cognitive changes personality changes mood swings
depression I’m dealing with balance dizziness I might really struggle with
over stimulation I might have to really get lots of
accommodations I might need to take breaks all the time I’m gonna get
fatigued far too much things are going to just overwhelm me really easily I’m
going to need a lot of changes in my life if you just start and that’s just a
list that I with a really impaired memory just rattle off in no time my brain injury occurred sixteen years
ago the result of a freak accident where a car jumped the curb and smashed a
traffic sign against my head this injury changed everything in my life and sent
me on a journey I’m still on today a journey to relearn what my brain can and
can no longer do it’s a journey shared by millions of people who like myself I
found their lives radically changed and often torn apart by a brain injury I was
stabbed I have lost a lot of blood and when you lose blood you lose oxygen to
the brain and then all kinds of neurological deficits and sooo which in
my case made me blind and talk funny I have no shame about it I find thing of
meeting someone they hate so I’m Turk I don’t say hey Joe I’m Brendan Church but
if it becomes a German issue in the course of a discussion or our plan I
will make sure that it’s a straight line not the undergrad one okay yeah I have a vague recollection of
it being totally black billets of black smoke and not not being able to see
anything but I again I don’t know if that was the fire if that was the coma
after the fire you know I got to the front door and the firemen when I’m told
that’s hatcheted down the front door and burst it down on top of me and ran in
you know in the by then things were cinders were falling in boards were
falling and stuff like that a burning house fell on you yeah yeah and then
also was it was it because of them maybe the smoke too like an oxygen yeah yeah
they actually didn’t think I was gonna make it they thought I was gonna die I
was in the intensive care for a long time I can remember complaining about
how the back of my head hurt you know and how numb my head was and I can
remember being in a bed in the cardiac unit with some other woman that was in
there for I don’t know what and complaining and about you know my head
hurting and different things and they weren’t paying any attention to me and
and I could remember the doctor saying you know you’re doing fine to the lady
next to me you’re not like her or something like that and I assumed that
he meant that I was crazy Nanni’s brain injury occurred over 25
years ago during her stay in the hospital
Nani wasn’t diagnosed with a brain injury and it’s still not uncommon for
this to happen without support from her family or friends
Nani found herself living on the street I would sleep in parks or in doorways
for years I had you know just like one pair our pants and a couple of t-shirts
in one pair of on one set of underwear one of the things that’s most
frustrating that I lost since the accident is the verbal ability you know
a lot of times I can be talking and I can’t think of a lot of words you know
and so the people have to supply it you know and I really used to banter
verbally with people a lot and now I’m not quick enough you know to do that I
can’t keep track of things enough to do that you know what’s it for about ten
years after my injury I didn’t talk to many other brain injury survivors then
in 2000 I heard of a local support group for what are called higher functioning
survivors fortunately today there are quite a few brain injury support groups
around the country the one I belong to the East Bay brain injury support group
meets in a public library I don’t know how someone can have a brain injury and
not have a partner and survive because I just lose so much you don’t know what’s
going on you need someone to lean on to be your advocate and support system and
your your better half of your memory just you have to go to all these doctors
and they say well how’s it been since last month I’ve had my share of greevey
and I don’t know that we ever get I have not gotten over it I get really
frustrated more that people don’t take the time to accommodate my situation both on a
physical annum like emotional brain injury kind of it’s certainly
encouraging to be in touch with other brain injury survivors it was my
experience with this group and the friends I made here that inspired me to
make this documentary in the hope of ending the silence about prospective
memory is a bit a major problem professionally academically and whatnot
that’s why I came upon what’s now called a PDA the local personal data of
assistant we write down copy your information down and have it at your
disposal the flash memory is just so difficult I not only have one PT yeah I
have four pts two tape recorders and I still forget stuff I’m fond of my friend
who I have in the support group I have been coming for years and I don’t think
I could name the entries of that cause of GBS of three of my friends the bad
memory I am grateful for their grace that they
do not think ill love me for not being able to remember something about them
but how difficult this is in establishing new friendships if you
cannot remember the personal data that of self-identification of another person in front of her there is no wear a cap and the glasses
is because this visual and movement and all that stuff throws me off so it’s
partly to not have to think but also because I’m not really able to think
well while traveling especially on something and then when get off at a
station of course it’s busy and bustling and stuff especially if it’s unknown
territory once I’ve done it once or twice with someone that help
but if it’s alive never been before it’s just overwhelming I mean there’s
plenty of disabled people that brain injured people that drive and I can’t
because of the motion and mental fatigue and the stimuli but then they have like
yeah it’s just remember like my memory is not as bad as a lot of other people’s
my fatigue and my mental fatigue and sensitivities Tobias but other people I can stay focused
longer until the fatigue wears other people are just always drifting
completely and stuff I was 28 when mine happened and a lot of
the people whether it be stroke or traumatic brain injury or whatever
there’s definitely a before and after identity and it’s like for 28 years I
was this and then this happened and it takes five ten however many years to
learn what you can and can’t do and then once you know that it’s like okay so how
am I gonna live the next 30 or four years my life or whatever and so there’s
that whole thing but in your case it’s it’s difference who I am exactly though
it would be much more difficult for you to say I used to do this and now I can
so I do that right so I’m just wondering in terms of deficits as they’re called
just because they’re call that if there’s anything that you because I
guess you would just have to see in terms of what’s normal maybe well or
what other people can do and you can I don’t know look at that it’s interesting
like honestly like uh I’ve been thinking about you know my life as it applies to
like my my head injury and the accident I had when it was to like more lately
because I knew this was coming up in the beginning yeah when I was two years old I got dragged
by a horse and a suffered a traumatic brain injury I think I had it was severe
swelling of the frontal lobe where which is where I guess all your coordination
and motor skills and like balance and things are stored I wasn’t expected to
survive and then when I when it became apparent that I was going to make it no
one really knew what my prognosis was gonna be in terms of like normal life
and then it’s like okay so I’m gonna have all my intelligence but walky I had
to I guess I had to relearn how to walk I had to relearn everything I overcome
on I’ve gone a lot farther like in the world of like physical movement than
anyone ever imagined I would have and with training like I’ve really come a
long long way but like there are some things like I am just not gonna be a
fabulous amazing dancer this is we’re both groups on this side
the space in between which is what it’ll be like I’ve spent a lot of money trying to
learn how to drive and more frustrating than the car is there riding the bicycle
which I kind of started to try to do and it’s I can do it I I can if someone
starts me I can go for a little while before I haven’t fallen yet so I can go
for a little while before I feel like I’m losing control and have to like stop
you know I can’t really start myself yet and I haven’t been out in a while
because it puts me in this like psychologically horrible place where
like I think it would be easier to learn to walk the tightrope than to ride the
bicycle because riding the bicycle is something that everybody is supposed to
be able to do you know and like and so that really Harvey’s story is different
from most others I’ve heard her injury was so early in life in my case it took
months to get back on my feet and begin slowly learning what I was able to do
after my injury I haven’t been able to hold a job in over 15 years and I spend
most of my time around the house and yard in Harvey’s case she has no memory
of her life before her injury one key feature of brain injuries is that no two
are alike what works well for Harvey may not work well for anyone else we can all
learn a lot from each other but my experiences will never be exactly like
hers and her experiences will never be exactly like mine if you have to
struggle if it does something to you you know it’s like yeah I don’t give a fuck
what anyone thinks I’m gonna be Who I am and I’m and I’m not gonna compromise but
you know if I want to do it I want to do and not everybody has that like you only
do that if you have to you know and and I guess I
it was either sink or swim you know and I I learned how to swim it’s not far from here err forgot the
middle finger next where you get to thumb put the thumb on the inside and
squeeze feel the attention building inhale squeeze exhaling relief Lake yeah where you are now in your current state
what type of things how would you describe that well that is also our
process of evolutions I I as many brain injured people I’m not willing to say
this is how I won’t be for the rest of my life I’m just thinking that perhaps perhaps I will recapture my old brain to
recapture by all the abilities and maybe even with the help of science or
pharmaceuticals will become even better I mean are you better now than you were
five years ago I mentor now than I was last week so let’s have you on your stomach arthritis of the thoracic spine and just
distress of the rib joints to the spine at what point do you realize were you
told or did you realize that you had a brain injury amount until a long long
time after so like ten years maybe five ten years yeah when did you finally
begin rehab for brain injuries probably at 1988 sir eight years brain injured
and out in the world I just thought I was crazy you know and I remember I
finally got enough nerve up to tell a psychiatrist you know and he said you’re
not crazy he said that’s part of your head injury
that’s the first time you had heard that yeah because I’d never told anybody what
was going on with me everything was just fine thanks eight years after her brain
injury Nami finally entered a cognitive rehab program in an Oakland Community
College you know I had to know when the bus left what time I had to be at the
bus what I had to do to get to the bus you know if I miss the first bus but
well my options yeah I think you taught me plan a plan B Plan C you know until
like have them all you know in case I lost one they can fall back on another
one and that really helped me get out of the house because I used to get lost
you know and I remember it wasn’t too late I think after you injure your brain
there’s often a kind of what I call fuzzy mindedness that develops there’s a
tendency to be a little more Spacey or less focused a lot of the time what
people think of as a memory problem is related very much to their lack of focus
and their distractibility so we do a lot of work with that cognitive
rehabilitation teacher survivors different ways to negotiate the world
around them simple everyday things taken for granted before an injury can become
impossibly complicated when you can’t remember things aren’t able to
concentrate or your understanding of the world no longer operates as it had
before your injury in programs like this one survivors retrain their thinking
they identify areas where they have difficulties and learn strategies to
work around them for me cognitive rehab was a cornerstone and being able to get
back into my life after my injury I’m always amazed when I hear of a survivor
who hasn’t yet had this kind of rehab truth is classes like becky’s can make
the difference between a survivor sinking or swimming this is the first
day I will introduce this assignment called get me out of here and you’ll see
it’s a pretty complex program where they have to read maps follow directions
write down write down very precise steps involved in accomplishing a task that’s
complex and it’s a good kind of simulation who cut the complexity of the
real world where you have a lot of things you have to keep together and
keep organized critical pieces we had to think what is
what is a noun can remember this is an exercise itself yeah my fascination is
always been how do we know how do we understand and with an acquired injury
there’s the history or the knowledge that I used to know this sorry I used to
understand this and so we can be Sherlock Holmes and try and figure out
what pieces are missing uh-huh that you used to have and see if we can
kind of parse it back together again but if you’ve never been able to perform
this cognitive skill it’s it’s a whole different maybe not necessarily I’ll say
from this from this perspective the acquired injury is harder because
there’s the sense of loss yeah how do you think it’s changed from the late
yeah I mean just in in any way that comes to mind I think people with head
injuries are a lot more visible and out there doing things yeah stating their
case making themselves known in the world I think there’s some better
awareness of what is a head injury but I still don’t think the general population
or public really understands what when someone says when they say I’ve had a
head injury how do you feel towards crane injure
people do you feel like a a bond or a connection or do you feel or do you or
you not necessarily if you or some people don’t want to hang out with other
brain injured people some people seem to feel connected I mean I don’t know deep
thing out there something will rot lazy once again okay because there is a
commonality of experience certainly I feel closer to a great danger persons
said our work to harm a Hollywood starlet for example right and I do spend my time both frankly and
certain people unhappily it’s a general they’ve got that productive time you
mean as a group or two people know about that one not one I think I’ve you are
less white lady here how many angels dance on the head of a pin or how many
dimensions are the Benham up to describe reality and you are form likely the air
how much does a bar of soap cost or but this person said that then once at that
toe terrible and died sink so in layers and and the consumerism and gossip is
not so appealing to me but the personalities of predictor people are
wonderful to behold art that don’t want to do it 24/7 if I can avoid them right
and I imagine but maybe on brassieres ago on my dev been locked up that’s a
brain Viktor person medication is another part of my post-injury life I
take a half dozen pills each day to help keep me focused help counter fatigue and
help get my injured brain to sleep at night I haven’t had a good night’s sleep
in over 15 years meds have improved my sleep but finding the right pills is
taking years of painful trial and error now on a good night I wake up only once
or twice because of my deficits my ideal environment is one with as little
stimulation as possible a couple of years ago my brother David introduced me
to camping out in the woods is the perfect place for me it’s one of the few
environments where I don’t get easily distracted or immediately overstimulated by the time I had called you know they
said that you had been an accident and then that you were that you were doing
okay they said you know he’s you know he was an accident but he’s fine now and I
said you know should I come home and they said no no no there’s no need for
that and no one ever used the word disabled or nobody ever used them you
know nobody ever spoke about the fact that there might be some longer-term own
law or long-term change and you know I I’m sure that mom and dad probably
didn’t want to explore that idea very much and you know and for them you know
each step that you would make towards recovery was probably a way that they
were really you know they’re probably really excited by that rightfully so one of the curses I think that you have
is that your injury really is it’s not like brain injury is invisible sometimes
and or usually but but I think that there are some that are more invisible
than others and yours is particularly invisible it could be because you know
when you got hit you got hit here instead of here or it
could be that the impact if it was just a little more even yeah a little lesser
even just a little more it would have had just the implications might have
just been totally totally different so where if I was like I had a median
ambulance there too if I was lying there bleeding on a sidewalk for another 20
minutes or something right yeah yeah there are any number of variables and
you know I I don’t know how they ultimately translate into how you
experience life now but but they but they do certainly you know over the years I’ve had a hard time
distinguishing between what is you and your personality versus what is kind of
the newer you post injury because of the injury
you know because well because there’s a way in which how I understand is that
there’s way which brain injury injury accentuates certain personality features
right but but so I mean you know there’s certain things that certain traits that
you had but but one I guess what I’m saying is that there’s there’s ways in
which um things that I thought were probably more about your personality
that later and past even in past three years I realize are probably more injury
related than personality nothing today Michelle I forgot other
friends are here okay yeah that’s fine
okay bye I think the very essential thing as just
the economic misery in which brain injured people have been catapulted by a
mere circumcenter iMeet many of us have had educational or vocational careers
entertainment of some considerable distinction and now we are left trying
to figure out how to live on too little money to afford us a decent apartment
much less a home car and they met what other people consider regular of
entities of wife I think that it is on top of that to it being plain injured on
top of being poverty-stricken is like you know makes it all the more difficult
to be non-breeding there didn’t deal with it is one thing but we bring it and
deal with it it’s doubly triply however much more difficult as well yes I
certainly agree with you I think the West caviar and don’t pay raise yours on
the table nowadays the camera I’m missing a few pages here
cuz that’s page nine let’s see where the other pages that he talks about despite
years of volunteer work in a post injury college degree
Nani hasn’t been able to find a job for all my talents you know it seems like
what gets highlighted when I go in a job interview is my deficits when I went
into this one interview I had one person sitting here and one person sitting here
you know I tried to ask if they could both sit on the same side of the room so
that I could read their lips or fill in you know what I miss by reading their
lips and no no they said no when I walk into a job interview they look at me and
I look at just like them and they figure that you have the same type of
processing and cognition that they do you know so when you start asking for
them to do things differently you know sometimes they perceive it as a threat
sometimes they perceive it that you want privileges sometimes you know they make
a judgement that oh I don’t know if I want to employ her she’s gonna always be
asking for stuff put a lot of fruit and some sandwich
stuff but he’ll do things like he’ll put this in here and he’ll put the ice cream
in the refrigerator instead of the freezer well the movies while they were
making him in addition to caring for herself
Nani also cares for her father who has Alzheimer’s what I don’t have is the
advocacy from my life that you do my mother had it for me she was like a
pitbull sorry should they use that sign sorry like that Bulldog I mean she just
you know tenacity that she never gave up she was just like right on the front
lines in these doctors faces about the stuff that was going on my life and I’ve
noticed that you have that same tenacity for the 25 years that I’ve been
rehabilitating about 13 of those years I’ve been homeless as a way of giving
back to the disability community Naniwa sometimes act as the facilitator
for support their meetings I had been given a second chance to live and I just
decided that if it was possible I would become an advocate this is a place where
I don’t have to justify myself and I have to feel like I’m making excuses are
asking for privileges you know I can talk about my head injury without people
say that saying that I’m trying to have people feel sorry for me or something
like that that one really pisses me off you know because my life is my life you
know I can’t deny you know like being homeless that’s all part of who I am and
in fact I wouldn’t have been as effective as a counselor if I didn’t
know what it was like to live on the streets what’s it like having a hidden
disability you have to tell everyone and they don’t understand
yeah he just it gets tiring just telling people because you look normal and but
you’re not acting right and then you have to keep explaining people
support groups fill an important role for survivors and just knowing a
community like this exists is important to remind survivors we’re not facing our
disability alone but there’s only so much a support group can do we also need
real changes in society so we survivors can get the care and support we need
after our injuries accommodations need to be put in place that would make it
easier for us to hold jobs to help us negotiate demanding and high-stress
appointments and public assistance offices or to deal with overwhelming
environments like airports and college campuses but to begin a serious
discussion about the accommodations we need it seems we as survivors will have
to educate society about our enemies I always I always have problems with
memory and organization so it was a little bit challenging I did lose my
ticket and I did get to them they did me my boarding pass and then I lost it and
then I couldn’t remember where it was and then they had to reissue me with
another ticket and I had to ring up last night and find out exactly what airline
was I on because I couldn’t remember I couldn’t remember where the piece of
paper was that had my flight information on and I couldn’t remember what time it
was that I was leaving and yeah but other than that it was all fine I met
mark when I was looking for a guest speaker for the support group he’s a
brain injury survivor who received a PhD after his injury and he’s now a
professor teaching disability studies Mark’s done important work researching
the lives of brain injury survivors and how we as survivors can change the way
we think about ourselves there is a great strength in the disability
community you know what we’re learning these days the disability tragedy models
gone out the window that’s it that’s it from times past
what we have now is disability pride disability cool disability chic you know
to think of brain injury as a source of pride it’s a revolutionary concept is so
different from the medical model do you think I’m brain injured and I’m proud of
it that is turning the tables upside down Mark asked us to wait in the garage
for a moment he wanted to show us something to help illustrate his point this is a lot about brain injury for me
personally I had a frontal lobe injury and the front the frontal lobe affects
your personality lots of people with frontal lobe injuries have this
inhibition one way this inhibition expresses itself is through anger so
lots of people who you’ll talk to will have expressions of anger maybe fallen a
outbursts but for me one way my personality change was I lost the
capacity to be shy Walli with his bully sit rehab
professionals always to tell you about the negative parts about less
inhibitions this inhibition can cause people to say things immediately but on
the flip side lots of people with brain injuries who have frontal lobe syndrome
if they have this inhibition they’ll be far more exuberant like they’ll be
mm-hmm they can tend to be performers those
sort of things they can be out this is an area that’s not really explored in
rehab because people think of deficits people think of changes as deficits
mm-hmm no not what’s what can they do it as a result of it brain injury pride
that’s a completely different way to look at brain injury to not focus what’s
been lost or to feel like less of a person because of it but instead to take
pride in who we’ve become after our injuries but we need to do
more than just think about ourselves differently we also need the society we
live in to be more aware of brain injury I want to know how we as survivors can
organize ourselves since every brain injury is different and has a unique set
of needs it’s a challenge to organize brain injury survivors around a common
goal not to mention figure out our place in a wider disability rights movement to answer some of these questions mark
suggested we’d meet with zona Roberts at our home in Berkeley Sona is the mother
of the independent living pioneer and activist ed Roberts this was I’m not
sure what the year was or what what relevant was but some wait a minute does
it say on the back that would be very nice he had a charisma about him that he
couldn’t with he’s snapping brown eyes kind of in his enthusiasm and as I said
when he was going to high school he didn’t like to be out and have people
look at him and stare at him and then he decided if they were gonna stare at him
he might as well be a star and so he started looking at it that way as long
as it’s gonna happen after contracting polio will stone High School ed Roberts
was paralyzed and spent most of his life in an iron lung but he didn’t let this
stop him from becoming the first severely disabled student to enroll at
UC Berkeley and later from becoming a key leader in what came to be known as
the disability rights movement seeing him speak different places and if
there’d be the kids in the wheelchairs who had multiple injuries Blane brain
injuries along with paralysis and stuff and he’d haven’t come up on the stage
with him and he’s has more inspired more kids and more people and their parents
as a result to band together to do things into to become public with their
disabilities and be a star you know if that’s what it takes then be a star if
you can pull it together and that’s I like hearing things about organization
because working on this documentary and trying to get people together to
schedule you know within a time frame and stuff it’s it’s challenging to get
organized brain injury it’s amazing how new the disability
rights movement really is in that same spirit as people in wheelchairs fought
for accessibility maybe we as brain injury survivors need to fight for the
accommodations that would benefit us I mean also it’s like gonna force the
issue that’s good the thing of brain injury as brain injury and then how much
to identify with the disability community like there’s certainly
benefits there but then like you were saying to that each each has its own
needs and so there’s a time for for unity of sorts or and then there’s a
time for just individual we we in our hands hold out bite if we don’t stick
together if we don’t advocate if we don’t build something that’s that’s much
bigger than my lil stained hospital if it’s if we don’t say this was a really
important thing but sometimes the system let me down and
for the next person I’ve got to make sure this doesn’t happen then we’re
letting down the next person in the same bed that we were and that person really
has far more in common with you than you care to realize and that person is your
brother and sister because they they really are you and you know what what we
what we don’t think about what we what we’re trained in society to think about
it this I’m not like I’m not like the person who’s down I’m not like the
person who’s homeless I’m not like the person who’s psychotic
I’m not what the person is epileptic or whatever you know I want to say the
absolute opposite I want to say to anybody who ever hears me crazy I’m
crazy epileptic I’m epileptic using a catheter I’m I’m using a catheter unable
to breathe for yourself I’m unable to breathe for yourself
anything object anything disrespected that’s me that’s bed number two that’s
bed number three that’s bed number four that’s us that’s our family
if we don’t stick together we we live or die by that you you you



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