The Survivor Forum has articles by survivors about their recoveries and their lives. It is a place for information and support for other survivors. It may also help families understand what it means for a survivor to live with a brain injury.

Professionals often have intensive but brief relationships with survivors while they are in their programs or receiving treatment. Professionals often wonder what happens to these survivors “down the road”. We believe that survivors can also educate professionals about the journey of recovery over time by sharing their experiences.

The road to recovery is often complicated, confusing and filled with ruts and potholes. It is also a journey that has no end. It is an ongoing path throughout the life of a survivor. We hope that this forum helps survivors navigate this journey.

Please Contact Us…
This forum will explore many areas. We will be constantly adding topics and articles. If you would like to send us an article to consider, we would like to hear from you. Below are guidelines to submit articles.

Topic…
Your choice as long as it is based on your experience.

Length…
2-4 pages double spaced

Format…
Microsoft Word file or file saved in rich text format.

You can send an article by e-mail…
Or you can mail your article to mlyn@lapublishing.com.

Marilyn Lash, Director
Lash and Associates Publishing/Training, Inc.
708 Young Forest Drive
Wake Forest, NC 27587
Tel 919-562-0015

Suggestions…
If there is a topic you’d like to hear about from survivors, please let us know.

Words Do Make a Difference in How We Treat People

By Shaun Best

When I returned from the hospital in 1978, I was overwhelmed by the unfavorable manner in which I was received.  Before my accident, I was headed for the US Air Force and the Olympics.  Those dreams were no more after I survived a three month coma in 1977. 

Upon starting school again I was legally labeled disabled, retarded, or handicapped.  At least I had a choice, I thought.  I went to my dictionary and learned that people who were described using these terms were not viewed favorably.  When I made this argument in school, people looked at me as if my cognitive challenges had robbed me of all my intelligence. 

I’ve worked for the last 30 plus years to enlighten others to the benefits of describing people with disabilities positively (challenged, challenges, differently abled, multiple intelligences, etc.) vs. negatively (disabled, retarded, handicapped, etc.).  I’ve worked on including people with different abilities within the community rather than excluding them due to fear.  I’ve continued this humane movement, in the hopes that some day others would see that words do make a difference. 

Luckily, in the last 30 years, many have seen the progression of these terms.  My work has been positively reinforced with the work at the Positive Psychology Center and the book Learned Optimism by Martin EP Seligman, Ph.D.  The optimistic explanatory style produces hope whereas the pessimistic explanatory style produces hopelessness.  Stated another way, pessimism results in psychoneuroimmunology  - a long term that describes how psychological events can change health and alter the immune system.  

Some lessons from learned optimism…

• Negative thinking is the disease.
• Using the power of positive thinking can be the cure.
• Develop an optimistic explanatory style.
• Avoid conscious negative thoughts.

I would like you to know that I have used the optimistic explanatory learning style since the early 1980s when I chose to use the term “challenged” to replace disabled.  Since then, I have created the Challenged Conquistadors, Inc. and have received hundreds of letters of support from around the world.  I’ve reduced the harsh manner in which some humans refer to others.  You can learn more about me and my work at http://www.headtohead.org/?art=255

For more information on this topic, see…

Adults with Brain Injuries :

 Myths and stereotypes about work and life.

The Essence of Interdependence:

 Building community for everyone

Together is Better:

Creating a community where each belongs

Notes and ideas from Terry Morgan

Finding the positive in brain injury

Anyone who can see the positive side has paid a price to see it.

This is how I arrived at the word price. When I was 38 years old I was on top of my game. A youth Pastor of one the largest most active and respected groups in Cincinnati, Ohio. We were known throughout the states and in many parts of the world. The ministry was good, times were good, and in fact I felt like a million dollars.

Brain injury changes everything

Then on May 19^th 1995 it all changed. While on a mission trip to Brazil, I fell 20 feet head first. Among many other injuries, I suffered a Traumatic Brain Injury. From feeling like a million dollars to having no feeling at all. From a million dollars to worthless. It has taken me 14 years and many experiences to where I am today. Which being is a survivor who now can see the positive side of TBI.

The price you have paid maybe higher than mine. For that reason, I don’t expect you to view TBI the way I do. Please allow me to share how after 14 years I have gotten my worth back.

Hypothetically my life was worth before the accident $1,000,000. To get my worth back, I have put some prices on things I consider the positive side of TBI.

• More time with family – Priceless
• Partially restored physical health – Priceless
• Partially restored mental health – Priceless
• Percentage of hearing restored – Priceless
• Percentage of tastes restored – Priceless
• Percentage of memory restored – Priceless
• Belief in people because of their response to offer help – $50,000
• Spiritual side of life increased – Priceless
• Confidence to do things again – $250,000
• Empathy for people increased – $25,000
• Sympathy for others increased – $25,000
• Love and understanding has increased tremendously – $50,000
• Aware of how much self worth is worth – $150,000
• Self worth comes from within not for something you can do – $150,000
• Real identity comes from who you are on the inside – $175,000
• Living within boundaries – $25,000
• Knowing we have limits – Priceless
• Being ok with who you are now and not what you were – Priceless
• Realizing your mental state might have changed but you are still priceless  – Priceless
• Understanding you can start over building a life without some of the baggage you had before – $50,000

Priceless!

I can see now things are worth much more than before. Some things are priceless and others add up to worth I had before.

The prices I gave certain items are much too low. For illustration purposes, I gave them an amount. I’m a much richer man because of my TBI.

It is my opinion that when we look at life from our heart and not circumstances we all can be wealthy. No one can take away that away from you. It is my prayer your life will be worth more than you ever imagine. Walk with your head up and know you are PRICELESS.

Poems on Coma and Survival after Traumatic Brain Injury

by Angela Machovec

 “Time is the best censor, and patience a most excellent teacher. Simplicity is the highest goal, achievable when you have overcome all difficulties.” ~~F. Chopin

Hi, my name is Angela Marie Cecilia Machovec, or just Angie, which is what most people call me… except for my father and my doctor.

I sustained a traumatic brain injury on May 30, 2000… it was actually my last day of high school. I was 17 at the time, and I was struck by a car when I crossed the street to go back home. I can’t stress enough how it was like any other day, the same time I went jogging, and the same path I took.

But my world completely changed at that moment, and so did everyone in it.
I was in a coma for about a month and spent 3 weeks in rehab. I left the hospital on July 17, 2000. Then I spent until Christmas in outpatient rehab.

I wrote these poems in the summer of 2002 over a creative writing course I took… and these just came out. It truly helped in my rehabilitation and acceptance of what had happened.

I began going to UNC Chapel Hill in the summer of 2001. Adjusting to life is still hard at times, but with each month it’s getting better and better. The thing about brain injuries is that nobody can really predict what will happen and how long it will take. Most people thought I was going to die, including the medic at the scene; if not die, then have serious cognitive problems. Yet, here I am today, with none of the significant problems people said I would have.

If you have faith and believe the way my parents do, along with excellent care, I think anything is possible.

I hope my writing helps people to deal with their problems, or that it can express others’ own feelings, not only mine. People who have suffered TBI or have family members who suffered TBI need to form a community to support each other. Good luck in everything that comes your way, and never forget to have faith!

 While I Was Sleeping  

vomit projecting everywhere
brain pressures are too high
blood transfusions
lung punctured
tibia fractured twice
right arm dead
no left kidney
eyes bruised,
bulging,
discolored…
left side laceration
split spleen
blood clot
morphine

beep
beep
beep
beep

erase her memory of all this

Thanks for trying,
but it didn’t work.

she might need a vena cava filter
she might need a tracheostomy
she might not remember anyone,
or anything at all.
she might be paralyzed
she might be retarded
she might not wake up
she might die

No, I won’t.

I’m going to win this, you’ll see.

  And I’ll be fine.
After 

 As she lays here, she admits to herself-
she doesn’t understand a lot of things in life.
She doesn’t understand why she had to leave others behind,
why she had to live to see what she could have become, yet was privileged enough to skip away from the pain.

She’s not afraid to make these mistakes,
She’s not afraid to be wrong.
She’s not afraid of dying (and knows he’ll be there).

So what exactly is she afraid of?
I’m not even sure of that part.
Maybe she’s afraid of dreams that don’t make sense,
or letting herself believe stories that fit between the crisp pages of a book.
Maybe she’s afraid of letting them know what she wants,
or not wanting anything at all.
Maybe she is afraid of letting go of these dreams,
miracles she spent countless nights imagining,
winding and rewinding them.

She’s afraid of people crying.
She’s afraid to be normal.
She’s afraid of falling into someone’s permanent outline,
never escaping the known.
She’s afraid of stumbling into someone’s footsteps and never making her own.

Was she ever really here?

I don’t want to be a silhouette.

There are many nights I sit here,
wondering how I ever made it to this place.
But I don’t cry,
no.

I can’t cry.

 Net Bed 

Wow-
look at all these people here.
I’m not like them at all.

I’m no different than before, I don’t have any problems.
I’m not like them.
I mean, just look at these people- I can’t believe they think I need to be here.
The man next door is missing one leg, others are missing eyes,
then there’s the one kid who doesn’t even talk to anybody.
And also that guy…
he’s retarded I think,
and I don’t know for sure, but,

he scares me sometimes.

That woman over there,
I bet all the machines she’s hooked up to weigh more than she does.
OK, so what, I’m in a wheelchair like everybody else.
And yeah,
sometimes my words don’t make any sense.
I’m only missing a little hair, and I have this stupid tube attached to me.
Hey, at least I still have my leg, and it will work again.

As soon as I get outta here I will run forever.

Oh my God

I just have to get out of this place.

(net bed – a tool used by hospitals to ensure the safety of a patient in case the patient would attempt to get out of bed unattended)

  The Other Side 

Brian was speeding.
He hit me.
He panicked,
and thought I was gone.

John was keeping me alive.
He said, “It’s a shame,”
and thought I would be gone soon enough.

Most people, actually, thought the same thing.
But, I was not allowed to make my big exit,
not just yet.

It is forever changing my life.
I can’t look at people the way I used to,
I see them now through older eyes of experience.
I can’t feel things the way I used to,
life gives me such a bittersweet taste.
I can’t hear things the way I used to,
now that I have heard the echo of a higher realm –
it has a much stronger pull than anything on this Earth.

It is forever changing my life.

Well, nobody knows why it happened,
and they can’t understand what I’ve discovered –
how amazing it is to know I am alive.
And how wonderful it is that I can see the sun rise and set,
knowing I can watch it all again tomorrow.
They don’t understand what I have seen beyond.

I wish people could feel it,
I wish they could understand,
they don’t.

But the reason, I guess,
is pretty simple.

They’ve never experienced the warmth on the other side.

 Butcher Holler  

To ever wish that I hadn’t returned
is a horrible wish that I know too well.
A lesson to value life (that is rarely learned)
was brought to light when this angel fell.
Fights with best friends brought me bitter dead-ends,
so I wondered why I struggled for life.
On no one at all could I rely or depend,
and I questioned God, could this really be right?
But then I spent some time in Van Lear,
and I learned the reasons why I came back.
The people there have a piece of me forever,
they gave me reasons to cry and reasons to laugh.
To know they’re why I passed the biggest test,
the answers uncovered make me know I am blessed.

  Drifting  

I had a dream last night that Mom took me to the store;
it was always the same, and never changing.

I don’t understand what they expected of me:
to always stay the same, never changing.

So many nights I spent alone, on my own;
time had no meaning because nothing was changing.

I couldn’t wait to leave and be alone,
not hearing comments on “how she’s changing.”

My “friends” don’t know me as well as they thought, Angela’s life is built around changing.

 Responsibility 

May 30th around 5:30 p.m.
I braked as soon as I could.
Glass shattered like
a spilled box of needles.
She took my mirror with her.
When I looked at her
she was lying
in the gutter,
smashed and split.
I sat
in the grass,
tail tucked between my legs.

The police traced her
using bright pink chalk,
screeching against resistant concrete.

*Note from the author…
I wrote this from the point of view of the young driver. It put a different spin on my view of what happened and it put me into his mind, which gives everything involved a completely different meaning.

  Between Preludes and Nocturnes 

When I come home I see the new lines on your face,
and more streaks of silver in your hair than before;
I know I caused them.
When I hear you talking to mom, the neighbors,
or just to yourself,
I notice that your voice has gone from lion to lamb.
I have no idea
what happened between preludes and nocturnes.
You could say that I am a clear glass of water and
on the edge,
or that I’m simply a mirror to your mistakes.
But I do know,
whatever happened between preludes and nocturnes,
became our cornerstone that was never in place.

*Note from the author…
This poem is about the relationship with my father after my hospitalization and first year of college. It’s about the change in our relationship and the change I saw in him.

By Gwendolyn Gibbons

Life after traumatic brain injury

I’m one of the lucky survivors of traumatic brain injury (TBI). I am visually impaired in my right eye, have a few memory problems I guess, but I still have full use of my extremities. I can perform most household tasks with minimal guidance, and still enjoy many of the things I did when I was young, like going to parades.

I’m still living with my 77 year old Mother, and have the majority of my life. It’s a good thing, we have fun together, because in 1973 I was involved in a car accident, and needed her even more. I was only 22 years old then. I was working as a secretary in the records department of a local hospital, and was headed to classes at the business school I was attending when the accident happened. It was raining out, and the roads were slick. It was definitely not a day for a parade, but my life’s little parade made a sudden turn that day, one that wasn’t much fun. Luckily I was the only participant that day, so no one else was injured. The accident left me with a head injury, lots of broken bones, and an injured right eye, an eye that all these years later, still only provides a foggy vision.

Living a new life as survivor of a brain injury

But I was young. I had things to do. Since when has a broken bone stopped a young person? I don’t know how long I was unconscious, but I do know that once I woke up I was determined to get back to walking on my own as fast as I could. I couldn’t drive anymore, but I could sure walk to get where I needed to go, and I did.

I’m sure like most brain injury survivors there are periods of time I’ve forgotten, but I seem to be able to remember recent events, and luckily a lot of memories of my childhood are still there. Special times and events I always looked forward to, as well as memories of things most young women enjoyed doing. Memories of the “parades” in my life are still there.

Memory is still there after my brain injury

Perhaps one of my most precious memories is of those I spent on my Grandfather’s farm in Emporia, Virginia. I spent 16 summers of my life going there to help pick cotton and corn. They were summers that gave me a chance to spend time with my mother’s siblings, being spoiled and encouraged at the same time. I was encouraged to set goals for myself. They wanted me to do more with my life than they had with theirs. I was trying to do just that when my accident occurred.

My mother has grown comfortable over the years with my disability, and has no problem leaving me home alone while she goes out with friends sight-seeing at night, or hitting yard sales looking for bargains during the day. While she is out I’m busy doing chores around the house, thumbing through fashion magazines, or checking out the sale ads like I did when I was younger. When she is home, we enjoy watching Fashion Shows on TV, or the station showing homes for sale in the area. Come to think of it, we’ve both always enjoyed shopping, so it’s a good thing she can still drive, because I can’t anymore. She takes me anywhere I need or want to go, like to the 4th of July Parade here in my hometown of Hampton, Virginia.

I’ve always loved seeing the people along the streets, watching the bands and floats go by, hearing the squeals of the children, and hearing how people applaud the effort others have put in to help us enjoy it. I still enjoy going to movies too. I may not remember the entire thing, but who cares. I had fun. I’m still young inside, and I plan to remain that way.

Meeting other survivors

As you know by now, my mother does the driving for me. Several months ago she began to drive me somewhere special twice a week. She drives me to a Clubhouse where I can interact with other brain injury survivors. I’m a member of the Kitchen/ Maintenance Unit there. I’m still performing household chores, but I’m learning more about how to multi-task and work with others to complete a job. If I have a question there is someone there to ask. I participate in the Meals on Wheels program in the local area with other members, and I’m doing things I never thought I would do again. I’m having fun and enjoying the parade of a lifetime. I’m part of this parade.

Denbigh House is located in Virginia.

Clubhouse for people with brain injuries denbighhouse@gmail.com or www.communityfuturesva.org

Communication or Tongue Tied after My Traumatic Brain Injury

By: Katherine Kimes

 Tedious exercises

arranged in a folder

lie on the coffee table –

breathless air passes between

my lips. I strain

to elevate my tongue

visualizing

the accuracy of the implosive

connection. But only an

inconstant fricative form follows.

Syllables

fumble towards

perfecting the pattern,

dah, dee, du, dau, separate

then as a series.

A sequenced variation of

consonants unfolds

as the combination continues,

this mechanical process

routine.

Repetitive sounds

customize and

carefully combine into

precise words: day: die: do: due

–quietly as

my mind reminisces

of the subtext beneath

the printed sounds

not found on the pages resting

before me.

Poems by Mary Wheeler on Loss, Hope and Change after Brain Injury

The White Dove Searching

By Mary M. Wheeler

Our dreams of life are stopped for a brief time as we have floated in the heavens and searched for our dreams.

Our lives have meanings that we do not understand; we are the people who struggle and face many obstacles!

The White Dove opens its wings to fly in searching of answers – why me?

We are the special people who had our moments with the White Dove and the Holy Ghost fighting for a second chance with life.

We are still the same person but our outcomes are so different. We have to change our dreams because we cannot have what we want in life, but we have something that other people do not have – the White Dove flying with us to protect and to seek our goals, with the heavens’ spirit of love for people like us!

The White Dove notices the love we share for people and how we share our ideas on helping each other as we go on in life!

We will make something of ourselves because we never give up on our struggles. I know the White Dove will always fly over my head to guide me through the obstacles of life!

It’s not an easy road, but we are fighters who had to fight for hours, minutes, seconds.

And the white dove opened up his wings from heaven, from the father above, to show us we have our goals set to help people who have to struggle to make it … and may we help each one to open his or her wings TO GO BEYOND THE GALAXY OF SURVIVAL.

Copyright ©2000-2002 by author.
All rights reserved by author.

 HOPE

By Mary M. Wheeler

Hope is a word that means we can make a new Life with help.

A dream that shows us we can live with our problems and people can share a part in our lives while showing us a new path.

To move on with our strengths and weaknesses and to belong in the pathway of life!

We need to be able to share our hopes and to be a part of something. Let us move on into the world of sharing our feelings. We need to have friends who have the same problems as ourselves.

Brain Injury is hard to face, with its heartaches and pain. We feel trapped and endure many agonies of failures and depression. We feel a loss of a part of life we cannot recover, but many of us go on day after day trying to struggle in order to discover some new ways to cope with every day living.

We change every day with small steps of success and torments of pain. We give encouragement to others as we fight for a chance in the real world, but brain injuries do not always show since we can look as normal as the next person.

I have struggled the last couple of years to help people and advocate for change of the feelings of employers. Yet the “regular” world does not understand our hopes and meanings of what we are trying to explain – or they do not see us as regular. “THEY SEE US AS NOT IN THE NORMS OF LIFE!”

I think we could teach people that we do have a lot of qualities they do not posses regarding caring about people, and we do!

My hope is that we can show people we can learn in new ways, show our strength and to understand WE CAN LEARN NEW THINGS, BUT IN DIFFERENT WAYS!

H=HELPING
O=OTHERS
P=POSITIVE THINKING
E=EQUAL OPPORTUNITIES

About Mary Wheeler

I am an individual who, in 1968, had a Brain Injury due to Acute Spinal Meningitis. I was in a coma for over 56 hours and found out about Brain Injury three years ago! I was upset about this and decided to write poems to express myself and my inner emotions. Writing poetry has helped to relieve the anger from inside me.

I used the “White Dove” symbol because I have a lot of high spirits and want to share my feelings with people. I want to let them know not to give up, but get involved with our communities so people are aware there are ways to cope with Brain Injury.

I did write a little poetry before the Brain Injury, but not as much as I do now. It is a new goal that I have made in the last few months and at times it is hard to find words. People with Brain Injury do forget some words and we have to use other words for meaning.

Many of us want to be our old selves again but Brain Injury will not let us! We have encouragement and many things we can share with others with Brain Injury. We should care for and support each other because we need to have friends that are going through tough times with physical and emotional situations that go with Brain Injury.

Brain Injury is a fairly new thing. Medical technology now can earlier detect more, which is good, but in the past, for me, was never detected. I just want to say we can make changes in our lives and help others who have Brain Injury.

My goal is to make my community aware of the resources for the Brain Injured and help set up a resource library for the center in my community.

Sincerely yours,
Mary M Wheeler

More poems about persons with brain injuries can be found on Mary’s website at http://www.poetrypoem.com/poetry1000

I Lived

 By Jason Ferguson

Everyday is beautiful; some are dreary and others are pretty,
I love them all and you would too if you were me.
To see that wonderful sunrise brings a smile to my heart,
Reminding every day; it’s a brand new start.
Then to see the marvelous sunset in the west,
It is there reminding us all that we are truly blessed.
To realize that I took so much for granted makes me want to cry,
I am so thankful that I did not die.

So many people do not get the same opportunity,
That is why I need to be the best person that I can be.
It does not matter what it is; everything happens for a reason,
Unexplainable events will happen everyday and there will be a lot more to come.
Some are to never be figured out; just because you can’t does not mean that you are dumb.
Take a second and admire the world around you and be thankful you are still here.
Make it a habit, day after day, year after year.
Peace 3.22.04

Surrender

 By Vicki Sue Parker

What I want to know
Is this:
If I walked towards
A mirage long enough
Will it grow weary?
If I stand a
Decent chance
Of survival,
I will stop declaring defeat.
I will arm my young soldiers
With the edged shards
Of my image,
And hunt down
My identity,
With the glint of my sword.
Scraping along the floor
Of subsistence,
The enemy of my life
Waits to be conquered.

The Cast of My Brain

By Vicki Sue Parker

 Today I will wear
My injury
Like a broken bone,
So everyone can
See my brain
Limp.
Hobbling around,
Unwrapping my pain,
I will wear
The crutches
Of their compassion;
My wound will
Answer for itself,
And no one need guess
What is wrong.

Today I will
Wear my injury
Like a tired cloak;
Sheltering unknowns,
I huddle my fears
Under a soft shawl,
And shield myself
Against the elements
Of my life:
Clutching the corner
Of my shadow,
I lift up
Just enough light
To look at
What I cannot face.

Today I will
Wear my injury
Tucked under all one
Believes they can hide.
A mask parading
The streets of Mardi Gras,
I will become a deception
Blending into a crowd
Of normality;
I can be New Orleans
Before sunrise,
Just to own what is average:
I have earned the right
To be unworthy
Of a second glance.

Today I will
Wear my injury
Like a crown;
Gathering up the threads
Of what I still am,
I will weave myself
Into a Mosaic.
I am a tall pile
Of jewels,
Using the wealth
Of my Soul
To inlay the path
Of my survival:
I am a pinnacle
Reached.

Today I will wear
My injury
As a wound:

Eliciting an earned sympathy,
Sinking under its own weight,
Not subjected to a stare,
Serving as a city conquered.

7/18/2004

Recommendation for more information 

The Get Well Soon Balloon by Vicki Sue Parker

Story book helps children understand their emotions and reactions when a parent has a brain injury. Describes coma, rehabilitation, coming home, and therapy from a child’s perspective. Recommended for families of injured veterans and service members.