Workshop Feedback
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We created this art piece to exppress the ways we each and all feel. We want to share these experiences to let other people know.
The ship going down represents that we were forced to abandon our old lives. The life boat shows how life goes on and we survive.
Thevolcano depicts rageful anger that some of us feel. And others relate to the volcano as it mirrors the unexpected situations that disrupted our plans.
On the inside cover, the road is the long journey of life with varing bends. The person on the bench represents the ability to be self-analytical and make better choices. Sitting alone on the bench also represents the isolation and lonliness people feel after experiencing brain injury. The "walk" and "don't walk" signs by the side of the road symbolize confusion: fear vs. courage; chaos vs. order; or hope vs. discouragement.
The three-dimensional brick wall is broken through to showour triumph over our "disability" and fears. The hanging egg represents our ability to hang inthere . The egg is fragile and requires our unwavering attention. It is whole and complete, as are we.
We are now aware of our sensitivities. All are fragile humans and need to be respected and we want to be treated as all others.
-I want company on the trip - maybe mourn who I was & celebrate who I?m becoming
-Realize the difference of doing something on-line (in the moment) & doing something that is whole.
-To get me out of the house, enjoy the people, I am a good boss.
-I want to relate about my own personal experiences through sharing with people in the group.
-Observe myself & others with similar disabilities in recognizing my own problems & expressions from artistic, imagination design to physical.
-want to listen
-want to access the whole thing, still not committed.
~Complete the task in a timely manner
-want to have fun, meet all attending participants, learn & grow
-an opportunity to process what I've been experiencing & make it a little more clear
-to use a medium that is different, a collage to show the difference of TBI. And to express to others what we are going through.
Common Theme
Survivors
misperceptions
what going to do with life TBI
change
life goes on
"reality" is beyond our comprehension
confusion
trouble with spatial orientation
challenging
it's invisible
pretending to be "normal"
angry(real)
misunderstood
passed over
going postal
frustrated
slow
try
dumb
chaos
lonely
love
understanding
isolated
a trip
robbed
ripped off
free
fine
alone
lost
medication
broken reality
patronized
de-humanized
are we safe
crazy
betrayed
at peace
marginalized
pitiful
pathetic
lost "everything"
"life's a bitch then you die"
everyone what me out of doc(?)
lost keys
"I forgot"
"I'm sorry"
challenging
exciting
miserable
everything is different
denial
overwhelming
loss of opportunity
realization of loss of opportunity
acceptance
flowing
need to flow
awakened
deceived
cheated
tortured
disguised opportunity
enlightened
self-aware
awareness
awareness of limitations
what is "reality"
testing how sharp I am today
being thankful
getting into "religion"
epiphanies
belief
spirituality
feel like giving up
surrender
power
innocence
will
new reality
Untitled
Charlie Hirsch
BIG [Brain Injury Group] performs for the larger Eugene value(s) simply by regular meeting(s). Handicap is mostly social concept and/or problem; how "we" fit and work in the larger community is shared, demonstrated among reports of people in our meeting. BIG provides examples of life problems coping skills, if/when people with more recently recognized head injury, need encouragement and advice.
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Life Goes On!(I forget just why)
Paco Schiraldi
"In my end is my beginning"
T.S. Eliot
or upper class to poor white trash
I'm not who I was but I'm not yet who I will be
and who I am I know was very fortunate
I had a home
I had a job I didn't hate too much
I had someone to share it all with
I went to bed one night and never woke up
"doctor my brain hurt - it will have to come out"
(monty python sketch)
so it's all gone now
the apartment
the career
the lover
even the woman who came
once a week to dust and
steal my scotch
not even a dog
but yet there is a reason for hope
or so they tell me
but I'm not convinced
yet but I've heard rumors
of hope
I may still see "rare beasts
And have unique adventures"
One day I may arrive
At that city that has awaited my return
For years.
(with apologies to W.H. Auden)
You're only as sick as your secrets.
_______________
Forced Life Style Changes
Rick Hansen
Disguised Opportunity to Learn
Lost in the Fog
I forgot and so can you!
"I'm going to die anyway so I can eat anything I want!"
If you get impatient with me
Think how I feel getting
Impatient with myself.
Confusion - discombobulated
A missing arm you can see,
A missing emotion you can't.
Everyone has hopes and dreams but
My future looks bleak
"What might have been" haunts us
each time we reflect on the past
(and we weep)
We are robbed of ourselves, our dreams, our opportunities, our independence.
If life was an illusion
My perception would be 60-20.
But life is not an illusion
The more input my mind
Receives the less output will
Come from it.
My challenge is like the forest
No one can see because of the
Trees of ignorance
Confusion, perceptual breakdown,
Pretending to be normal takes an
Academy-award winning performance
But without the acting it's all too
real
I think you understand what you
thought I said but I don't know if
what I said is what I meant
at first all my friends were
faithfully beside me
but now like everything else
they've left me all alone - all alone
and frustrated.
_______________
Absence
I miss your deep smooth voice
as they told me on the phone you'd left.
a death in the family, a family tradegy?
your daughter alone needing help
but I need your friendship
(your kind, reassuring way)
and your claim that you love me.
Two Weeks After the Disaster by Leslie
_______________
Some say that good has come of the tragedy
And we may have learned a thing or two
About freedom
And the fragility of life.
I try to remember how it's been
As my muse has returned
So I sit here writing poems
But if I had a boy
I'd name him Free.
There was chaos
And confusion
Sadness
Anxiety
And panic
Fatigue
Insomnia
Loneliness
And frustration
So I sit here writing poems
But if I had a boy
I'd name him Free.
Not So Different
_______________
Sometimes I feel different
Like a flightless bird
Not an ostrich but a dinosaur
Alive in the 21st century
A medical miracle:
Only 50 percent lived,
The others died
In those days.
A veteran, a scattered bird
Who's lost his focus
And can't hold on
A survivor
Looking to become
A thriver.
But considering the numbers
The possibilities for diversity
The crowding of humanity on earth
Maybe I am more similar
Than different.
The Futility of Frustration
by Rick Hansen
_______________
It does not matter whose fault it was,
The who, the what, the where, or the why
Fate stepped in to change my life
In the blinking of an eye
No longer would I be the same as before
To be carefree ad unworried are much the same
But life would change like the closing of a door
I was suddenly one of THEM: the crippled, the lame
I was totally unprepared for what would happen next
It was far more excruciating than the pain
I know that might sound a little perplexed
But how much more loss must I sustain
I must now deal with being agitated
From being all alone- and frustrated
How I wish I could just talk again,
And let my needs be known
People would no longer stare
And act as if they were all alone.
I would feel like a whole person;
Oh how can it be related
I would no longer feel
So lonely and frustrated
How I wish I could just walk again,
I don't care just where or when.
Freedom would be mine to come and go,
There are many places I've never been.
To be like everyone else
Can not be over-stated.
I would no longer feel
So lonely and frustrated.
How I wish I could care for myself again,
And be self-sufficient and free.
My family, relatives, and friends
Would not be inconvenienced by me.
To be Master-of-My-own-Fate
Can not be imitated.
I would no longer feel
So lonely and frustrated.
How I wish I didn't have panic attacks:
They are so awesome and eerie.
I would feel much calmer
And far less sad and dreary
No more would others look on in dismay.
Life would be more manageable, if lived day by day.
To say I'd have less stress is understated,
I would no longer feel
So lonely and frustrated
How I wish I did not forge so much for everyone's sake
I would no longer make such a stupid or foolish mistake
My mind wouldn't constantly be filled with self doubt
A sense of security and understanding is what it's all about.
I would no longer interrupt others
And that must be hated
I would no longer feel
So lonely and frustrated
How I wish I could concentrate
More on the task at hand
I would not get so distracted,
Like a stripper in a band.
I could follow directions,
Once they are stated
I would no longer feel
So lonely and frustrated.
How I wish others were more sincere
I could once again feel good about being here.
People might think they understand
But simply they can not.
I can not even understand myself
But then again maybe I forgot.
My ego has been badly deflated
I would no longer feel
So lonely and frustrated
How I wish my life could be fun and wild
I'd no longer feel confused like a lonely child
Everything would be a whole lot less hectic
Life would become exciting and electric.
Maybe then I'd be less agitated.
I would no longer feel
So lonely and frustrated.
_______________
I woke up in a hospital, I thought, but it turned out to be a Nursing
Home. Then I saw my best friend, Patty Leavitt so, I know I was hurt,
or she wouldn't have come all the way from Maryland to be with me.
I had to go to the bathroom so I started to get up and fell right on my butt. They say the heaviest part is always the first thing to hit first, so I fell on my butt.
Then I asked her what happened to put me there, and she told me I was in a car accident. So, I guess that was when I became aware of my problem. My ex, John was there the next day, and I kept calling him Rob, my first husband's name. He kept telling me his name was "John" but I kept calling him "Rob." That had to hurt him really bad.
Then I got really mad at God, our whoevers up there, because I felt like he betrayed me. Then, I realized I had to start back on my life. I felt betrayal but I was also smart enough to know, that he, or she, wouldn't give me things that were too tough for me to handle.
Next, my ex left me and he shipped me back to my folks who were then, and still are, living in Battlecreek, Michigan. I couldn't stay there with them, I figured I was too old to be living with my folks, I had to get out of there. They babied me. When I was in the airport, I was still in a wheelchair, and the porter, at the airport, kept yelling at me like I was deaf or something. I finally told him I was...
I felt really lost. I was also on medication. Prozak - so I got off of that. I did that cold turkey like I quit smoking. I figured that was the only way for me. I felt really cheated, but like my friend and me always say "Life's a bitch and then you die." I figured I was too mean to die.
Sometimes, I felt like giving up and surrendering to by bodies limitations, then I thought "I'm not going to do this. " I'm not surrendering. I'm just not the surrendering type. So I figured I better get with the program and find out what I can do. In other words I needed to flow with it. And this would definitely be a challenge. And, maybe this could be exciting. So I came back to Oregon, and wanted to be on my own. And now I have my own house and doing the best I can with what I've got. I feel like every week I do something new. Oh, I still feel passed over, and misunderstood and frustrated, but Im concentrating on getting on with my life.
Oh, I still ask myself "What is reality." Oh, I still get lonely, but because of you, the BIG I finally am starting to feel like myself, and you guys have helped me a lot.
I'm finally coming out of denial, and everything is different and I have accepted it. I know now that I just have to go with the flow, and I know through my will, I will succeed.
I just know it, I've had to pull back my expectations and make ones I can reach. But my new ones to be at peace with who I am. It may not be great, but I already feel like I broken the reality, because when I was in Sacred Heart, one of the doctors there told me I would never walk again, so I don?t look at this as a lost opportunity because I know because of my will, I will be able to do these things. It will just take me a little more time.
I try to look at this as a disguised opportunity to prove to those doctors that they didn't know what they were talking about.
I guess if you want to get down to it, I've gone through the chaos part, don't feel robbed or ripped off anymore, and there is not way I feel lonely, but if you look at it, I have lost my innocence but I've found the power to go on. I've tried religion, also and I definitely believe there is some one out there, but, why did he make this happen to me? I know longer feel deceived, but I still have questions. I wonder what I have done wrong in my life to warrant this, but I know I?m not invisible, I just thought I was. At first I would get angry with myself for everything, but now I feel enlightened. Because I figure, I can be pitiful, and pathetic, or I can see what there is there to challenge me today.
I got to a point where I'd have to write everything down, but they say if one part of your brain shuts down, another one will take over for it. I really believe that because first I felt like I lost everything then I found?.. makes me feel less alone.
I guess I don't feel isolated anymore, because of BIG, you guys have helped a lot. You've helped to enlighten me and I could be a lot worse off, that I now know. You've helped me become more self aware and used to the new reality.
Of course I have new limitations, but I'm not tortured anymore, I think I have learned to "go with the flow."
I've found I don't have to say "I'm sorry" anymore, I just say "Wait a minute, I'll remember. Give me some time to think about it."
That is my story, I'm sure I forgot some things, but I think I've used most of the words on the list we, as a group made up. I'm sure I forgot some, but I tried.
April 25, 03
by Janice Long
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I have been battling depression all my life. I feel angry, alone, frustrated, & lucky that I am still alive. Many of times I've wanted to give up, but God & will have helped me to go on trying. Realizing I am not alone with my desease is very helpful, for many years I was in deniel that anything was wrong. I was really angry because I felt dumb because I didn't learn in school as fast as other kids. As the years went on I was so miserable as school became too challenging for me to learn. So I quit school & never went back. I?ve been to several counselors, psychs. I have no friends because everybody thinks I'm crazy. I embarrass myself by yelling, screaming over rediculas things in stores outside, anywhere & everywhere over little things, anger takes over, even when I try not to let it. Now I am finally taking my medication as prescribed and learning about myself so I am becomming a better person. And finally loving who I am.
_______________
Untitled
Spirituality is the way to peace.
What Is Reality? Reality is Life.
Life is very challenging. You have
The power to overcome.
Your not as crazy as you feel.
Don?t give up even though you
Feel like giving up. Build the strength
To keep trying.
Life's a bitch & then you die oh
Me oh my I could cry.
Love makes the world go round.
A puppy named Guy
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On a cold Saturday in December
Outside the Holiday Market
I saw them in a cardboard box
Five adorable puppies, from a litter of nine
"Free to a good home"
said the earthy young couple
and I couldn't resist
one with a white strip down his nose
and named him after a loyal friend
who stayed by my side
a long time ago
when all looked hopeless
You were at a business meeting
And didn't find out
Until we showed up - surprise!
Look what I found to join our household
Wanting someone to nurture
Besides you and the cat
Who's too independent
I found it in Guy
He was a hit at the dog park
Played well with others
Didn't cause problems
Until he went mad
It's not that sad, she's young
Leslie
_______________
Brenda is in love
At least she says so
And his name is Finn -
John Finn, that is.
He's her best catch ever
So she says,
The best she's ever found
In the sea of lovers.
She's a friendly one
And it's been a big ocean
With dolphins, tuna, perch and cod
Flounder, sharks, stingrays, eels.
She's seen them all,
A colorful array
But many slipped away
Or jumped out of the bucket.
The waves have been high
And the boat's been shoved around
Will this be a good catch?
I wish the best for her.
Brenda is in love
At least she says so
And it sounds promising.
But what will he do?
He took the hook,
But like the others,
Then he vanished.
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Untitled
Virginia Hambley
Awareness
How aware I can be
How aware of myself I can be
We're all really insecure about being accepted
To be accepted we have to be self-aware
We are thankful despite out head injuries
People need to be thankful for what they are, who they are
People need to be thankful for what they are, who they are
I feel-
I am thankful
I felt like giving up
I still feel like giving up
I choose the path of least resistance,
So I'm not gonna kill myself.
Living
It's too much effort
It would be too much effort to kill myself.
If you asked me before I had a head injury I wonder how I would react - probably the same way. I feel pretty much myself.
There were times in the road back that I thought I was crazy - I'd lost my mind. Now I know I haven't - because there's ways I think about myself and life that are not crazy. I know that I am not crazy.
I feel at peace - I have felt at peace - after all that running and jumping and flying. I had had a harrowing time.
I know this whole event is a disguised opportunity. But I loose site of it too often and too easy. It's too bad because it'd be good to keep that in mind - that it was/is an opportunity. I think of yin/yang when I think of the event.
I think I'm not focused because I'm not talking - this stuff is going on in my mind. The whole experience is overwhelming - I think - VERY! And it's hard to have people who have never had the experience to view it & even understand what it all means. Even me - after the (end?) say if I too easily forget about it/ but then again I too easily remember it...it's hard to get a grip on it!
In a sense all these words have new definitions - challenging - I've looked it up in the dictionary - when in 6th grade - it means something different now - I'm amazed and surprised that we don't get anything for it - a big intense expense nothing even comes from it. The whole experience is ignored, is forgotten by the population and we have to deal with it every day of our lives.
The way I would live my life. Yeah it's a struggle - everything is a struggle- life is a struggle. It is. I never disbelieved it. I know now the meaning of struggle. I didn't before. I struggle to get out of bed - it's hard with this arthritis.
I have felt pretty miserable. Words mean a lot to me. Having an experience like this - words mean a whole lot now. I've come to love words. I used to write - but now it's gotten frustrating- I don't write any more. Words don't go anywhere. It all stays in my book - it's a drag. I don't like the fact. I have lots of thoughts - they don't go anywhere - they stay in my book. How could they go anywhere. I want them - I like to go out in public and show themselves off. I'd like to get them judged by the public. I don't know how to get this out'to be seen by the public. I feel indifferent to reading poetry. It's hard. I don't know what I mean.
I've felt lonely. But I don't know. I've felt lonely anyway in my life. But now I feel like a lonely person and there's no difference ... lonely and isolated I feel. Actually I feel fine. Loss of opportunity- for me and everybody else. I haven't really gotten around to the whole thing. There's a lot I could give, I can produce, I can make, I can do- that I haven't done- because of the head injury. For example one thing that gets to me ' the relationship I have with my mother. I never thought it was great. She did. I did everything alone - go places. Now I feel I can go places less because of my head injury. I have a lot of medication - they are enzymes. When I travel I get lonely. I don't talk to anybody. It's hard. I like to travel. I get so tired talking. It's been awhile. It's kind of draining/exasperating. If I'm traveling - I talk to people here. I'm not sure I get into a good conversation. Why should I travel to find someone to talk to. It's not something I need to do. I'm not sure. If I were sure I wouldn't travel.
My spirituality- one way of saying spirituality is religion. I don't know. Spirituality is a broader concept religion is squeezed into. It's what everyone has - it's a yearning, a desire. But squeezing that reality into a closed system - is one thing. Spirituality is a lot broader - a lot more open.
I went to church when I was a teenager - when I was a teenager in my small town - more for friendship and community building - doing fun things. Then I came here after my accident - I went to the Unity Church. I liked it. I was run by a man, Bill Wilson, who's moved back east. Baine Palmer has taken his place. He's a different personality. I now go to Center for Sacred Sciences. Now I believe in God. But it doesn't have anything to do with the accident.
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Levening Dough
OK. I wasn't here when the group created this list of responses to their BI lives.
What I find interesting and disturbing and oh so very sad is how many of their responses also express my life experience since my major accident in 1993.
When I first started reading the list I just wanted to break out in tears it's like they were digging into my heart, ripping the flesh wide open and exposing it to the world.
So, I suppose that it's the exposure that hurts me, scares me the most. Not because I am ashamed of having been in an accident but because other people are intolerant and impatient with my challenges, with my changes, with the new me.
I spend a great deal of my time and energy covering up. Trying to manipulate my environment and interactions with others so that I seem normal to them. It's all about their comfort.
I have no doubts about my own talents and abilities. I didn't loose my intelligence along with everything else. But other people don't have the time or the inclination to allow me to express myself on my own terms. So - I am constantly adjusting to fit their needs, putting my own on the shelf.
I had just finished my Masters presentation at the University of Oregon and three hours later I was in a car accident which wiped out the 7 years of schooling I'd just finished as well as my opportunity to become financially independent and a success.
That really sucks!
So, it's been a crazy, crazy ride trying to figure out my life again. It's just too overwhelming for me to reiterate it for you.
The image which comes to mind which would best express my life?s development after the accident would be to take all 80 of the words written on the pages by our group and then add a dash of general ignorance in the medical and provider's community along with a pinch of sexual challenge. Then mix it all up into a nice round ball of dough. Set it aside and let it rise - then punch it down. Let it rise again - then punch it down. Continue this process of rising and punching until at some point the dough rises into something the general population will accept - oh, punch it down. Ten years after my accident every time I rise , I am still being punched down. Unfortunately, I don?t think this experience is unique to me.
What's sad is that some people never rise again after being punched down. And some people have risen to a level beyond what the general population and recognize and therefore have been punched down.
Untitled
_______________
WE Are
The walking wounded
WE ARE
The ones you see
WE ARE
Your friends and neighbors
WE ARE
So let us be!
Going back to work
_______________
I don' have time to dwell on the past and what has happened over the last 33 years but it does haunt me. It seems to follow me around, like a black cloud looming over my head that won't go away sometimes. The past doesn't stop me from wanting to do work that is fulfilling and to enjoy life and have fun. A head injury never goes away, but it does give you all kinds of new challenges and choices to do things differently. Something motivated me to continue through college and graduate despite the odds, to keep learning, seeing, and trying new things.
Being a young kid in school at the time and having no real work life to go back to after the injury, for me becoming independent has meant taking the challenge to try many new things. It's been a long, long trip and it has been harder than hell. Going through the Transitions program at Lane Community College I had to write a five-year plan. My counselor helped me see the importance of having such a plan.
Those not familiar with survivors may be interested in knowing that the way that survivors are treated has changed a great deal since the 1970's, when maybe only about 50 percent of us survived, to not when at least 90 percent survive. In the early days, people were put on a bed of ice while unconscious. There was not as much rehabilitation - there was speech therapy and physical therapy for the lucky ones, but that's about it. Now those who can receive rehabilitation are more likely to return to a life similar to their former life. I want to keep on trying to create a better life.
"I forgot and so can you."
Paco Schiraldi
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Adymia- apathy, loss of drive, lack of motivation
Disinhibition- a decrease in the ability to control impulsive behavior
Flooding- overwhelmed by, or awash in, one's emotions. This can take place even though the flooded individual does not appear upset or distraught or even consciously aware of being under an emotional overload. In a flood, thought processing slows, and thinking, language skills, and actions way be severely impaired. Flooding may be triggered by external events - the need to make a decision or to immediately solve a problem; or from internal pressure - the awareness of one?s own confusion, a sense of helplessness, the pain of one's loss of self.
Anhedonia- loss of a sense of pleasure
Aphasia- inability to comprehend language
Emotional problems- these may include sleep disorders, mood swings, restlessness, lack of energy, anxiety, depression, inability to cope, agitation, sexual dysfunction, inappropriate behavior, inability to self-monitor, self-centeredness, low self-esteem, poor emotional control, crying and laughing excessively, lack of motivation, and difficulty relating to others.