Acquired Brain Injury Network Of Pennsylvania, Inc.

"Empowering Survivors and Family Members to Rebuild Their Lives."
Stories Of Hope


THANKS TO ALL WHO SENT THEIR STORIES

TO ENCOURAGE OTHERS ALONG THEIR JOURNEY TO RECOVERY.

Survivors are welcome to submit their Stories about building new lives after a brain injury of any kind.

Use the Email ABIN-PA button to send your Story to info@abin-pa.org.

Your Story will edited for length and spelling and returned to you for your approval. 


HERE ARE THE STORIES LISTED BY THE AUTHOR'S FIRST NAME. 

CLICK ON THE NAME AND YOU WILL JUMP TO THAT STORY.

ALEXANDRA - 1989 - Houston, TX - posted 2009.03.13

ANNA MARIE - 2001 - Schwenksville, PA - posted 2011.01.29

BARB - 1989 - Lansdale, PA - posted 2006.08.04

BILL - 1988 - Allentown, PA - posted 2006.10.01 - passed 2011.06.29

DAN - 1991 - Philadelphia, PA - posted 2006.08.10, revision posted 2007.07.16

ED - 1989 - Pittsburgh, PA - posted 2006.08.05

JAMES - 1992 - Reading, PA - posted 2006.10.03, revision posted 2007.06.17

JEANNETTE - 1974 - Pittsburgh, PA - posted 2006.11.02

JOHN - 1993 - Easton, PA - posted 2007.03.17

KARL (Karl Williams) - 1991 - Tunkhannock, PA - posted 2008.07.06, revision posted 2009.04.25

MADELAINE - 0000 - Ardmore, PA - posted 2008.07.06

PAT - 1989 - Telford, PA - posted 2006.09.01 (three poems)

STAN - 1986 - Hatboro, PA - posted 2014.04.21

TIFFANY - 2005 - Philadelphia, PA - posted 2007.10.13


HERE ARE THE STORIES WITH THE MOST RECENT STORY AT THE TOP.


STAN - 1986 - Hatboro, PA - posted 2014.04.31

 

One person's focus to achieve what some would say is impossible
Parents' everlasting love, hope, and faith
Love and support of family
A community of people contributing and serving
Anything is possible!


Everyone, everywhereólisten up! Here's a story of hope. There's no silver spoon in hand. You gotta want it, know that you can achieve it, and act as if you are achieving it, even when you think you can't. Have faith!

In the 1960s and 1970s, Stan was growing up with his brothers in an average American home in an average American neighborhood twenty-five miles north of Philadelphia, Pennsylvania. February 27, 1986, life for those in this home changed drastically. Stan was in a car crash. His friend, the driver of the pickup truck he was riding in, lost control and the truck rolled eight times. Stan was ejected and was critically injured. He had a long list of obstacles facing him: seven surgeries, three of which were on his brain. During one surgery the doctors took out part of his brain. He died twice. Two of the surgeries were on his leg. He shattered his femur and had a twelve-inch stainless steel plate put in that had thirteen screws and two bolts. He completely lost his entire right side, his speech, and had to relearn everything. He was in a coma for eight weeks and in the trauma/intensive care unit for three months at Abington Memorial Hospital (AMH) in suburban Philadelphia. He had pneumonia three times, as well as bruised lungs, one broken shoulder, one dislocated shoulder, one broken arm, and multiple facial bone fractures. He contracted chronic hepatitis after requiring eighteen units of blood. He spent five and a half months at Bryn Mawr Rehabilitation Hospital (recognized at the time as the best brain injury rehab program in the nation) in Malvern, Pennsylvania.

He has had a seizure disorder since 1986, is blind in his left eye, and has one-quarter vision in his right eye. He takes twenty-four pills a day, which require an hour for him to organize.

Since his crash, from his trust and faith in his God, by his positive attitude and determination, and due to the love and support of his family, friends, and community, he is very much alive. The statistics show that the average brain injury person begins to have peak performance in his/her recovery around year fifteen. Stan has continued to progress in what is now his twenty-sixth year.

In a book that Bill Rueger and Louise Travis have written, you'll follow Stan step-by-step, through his successes and failures, on his journey back to life. In it are contributions from family, friends, and the medical andreligious communities. They talk about their professions, working with and knowing Stan, and their belief in what most people call the higher power that is present in the world - God. Also provided are real strategies that brain injury patients (and their families) can use in their quest to return to everyday independent living. Finally, Bill comments about the spirit in each of us. The spirit that is who we are, and without It we wouldn't exist. And, what growth and change man can create when man taps this power.

Welcome to a story of love, faith, and hope, and the journey of connecting the dots, one day at a time, back to life. From learning to peel an orange, to learning to speak and walk again, to water-skiing and bowling twelve consecutive strikes for a perfect 300 game...

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ALEXANDRA - 1989 - Houston, TX - posted 2009.03.13

 

Tribute to Jeannette

Yesterday, the 11th, was the 20th anniversary of my accident. There are as many stories as people and unfortunately we are not all celebrities. It seems that there is no way to get out the stories that are all too common. I know that if I hadn't read Jeannette's story--I would have had a much more difficult time.

I wonder if others find it difficult to "think quickly" when someone is purposely trying to hurt them with their conversation. In years past, I never had difficulty holding my own, but since the accident I find that instead of fighting-I flee- not being able to find the words to defend myself.

I was thinking about that today and wondered if that is a common complaint? There are too many people involved with TBI patients who are too quick to judge. Sad for those who are still trying to come to grips with problems that "professionals" either ignore or say they are trying to fake.

You know, people who assist the blind are often blindfolded to simulate "non-sight". I wish that something could simulate brain injury and the feelings that follow....depression from losing the person they used to be....not being accepted by those you knew before....family who doesn't understand and makes no effort to do so....and on and on! Maybe some understanding could come from it.

So glad for Jeannette. She is my angel as I keep telling her----because she had the experience and guides those of us who are still trying to find the way! She angelically touches all those who are lucky enough to know her.

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KARL - 1991 - Tuckhannock, PA - posted 2008.07.06

 

During the 1970s my wife Nancy and I worked with kids with cognitive disabilities (mental retardation). We met Aaron at a small institution outside Philadelphia and became his adoptive parents

In the 80s Nancy went on to work in administration and eventually became Deputy Secretary for MR in Pennsylvania. I went back to school and then started writing. I've published two books with leaders in the self-advocacy movement (the civil rights work of people with cognitive disabilities) and I've released five CDs - one of them with the national self-advocacy group SABE. 

In 1991 I fell off a bicycle. I wasn't wearing a helmet and I was knocked unconscious for a few minutes. When I came to I didn't know who Nancy was. During the week I spent in the hospital I was convinced I was making a film about lions in Africa. The fact that I had no camera and was on a different continent didn't faze me at all . . .  And then I came back to reality and was released.

I know my injuries were minor, but I did need some time and help to recover. What I was most concerned about was that I return fully to the person I'd been before the accident - because I'd heard about people who'd been changed completely by their accidents, whose personalities had been so altered as to make them seem different people altogether. 

I'd been reading Proust when I fell off the bike. Marcel Proust is what some might call a "difficult" writer - his sentences can go on for a page or more. So when, after a few weeks, I picked up the book again and was able to go back to reading it, I figured I was OK and that was it. Until one day Nancy walked into the room - and burst into tears. She said she felt like she'd walked into a train station - there was no sign that I was at all aware that someone I was very close to had come in. She said I had no affect; no affection - no apparent feelings or emotions at all; no sense of humor; no sign of interest - even though, as I say, I was reading Proust. I was not with her any more - I was inside myself.

After that I knew I still had a way to go. I began asking Nancy - frequently at first and then from time to time for years afterward - how I was doing; if she'd noticed anything.  

I can't say that I did anything that I can explain - except that somehow I didn't allow myself to relax into believing that I had fully recovered. I wasn't going to believe I was OK until Nancy could say - Yes, you're you again.

            After that first year, the question of whether I was OK yet was good for a few laughs. We'd discuss whether whatever I'd done "was the head injury" or whether I'd always been a little whacky in that department.

            But with Nancy's help I was able to come back fully (I hope I did . . .) to be the person I was before the accident. In the mid-90s, for the year after my mother died, I was driving from Harrisburg to Baltimore once a week to help my father. My father and I were like oil and water, to use the common expression. That year I had TMJ (unexplained jaw pain), a detached retina, and I was diagnosed with a bi-polar condition. Before the head injury I'd had mania or depression occasionally, but I believe it was the effects of the head injury combined with the stress that year which pushed me into full-fledged bi-polar.

Although I still have some dizziness from time to time and I'm still taking medication for the bi-polar condition, I know that my accident was a relatively minor event. But - I did get a song out of it.  "Shoulda Had A Helmet" is on my first children's CD.

SHOULDA HAD A HELMET
(click below to play)

 

      VERSE:      I was riding my bike one day and I wasn't going fast at all

                          There was a little kiddie train on a little kiddie track

                          And my wheels got caught and it threw me out of whack

                          And just like Humpty Dumpty I had a great fall

 

      CHORUS:               I shoulda had a helmet

                                      Cause it got pretty ugly

                                      Next time I'll wear a helmet

                                      Boy I was pretty lucky

     

      VERSE:      When I fell off of that bike I landed right on my head

                          The bike wasn't even scratched and it wasn't even dented

                          But my knee was torn up and I was knocked senseless

                          The people who were with me thought I might be dead  

 

      VERSE:      I don't remember one thing about riding in the ambulance

                          But the doctors had to keep me for about a week

                          Cause I was making no sense whenever I tried to speak

                          They thought I might never come back from La-La Land  

 

      VERSE:      Long story short I got better went back to riding my bike

                          Now this may never happen to any one of you

                          But there's something so simple that everyone can do

                          Watch out now it's coming - gonna give you some advice

     

      CHORUS:               You oughta wear a helmet

                                      Cause falling can get ugly

                                      So always wear a helmet

                                      You won't need to be lucky

     

      TAG:                If you always wear a helmet

                               You won't need to be lucky

 

      (K.Williams)

 

      © Canny Lark Music 

 

SURVIVOR
(click below to play)

 

      VERSE:      I would've never known what hit me

                          If not for Marianne

                          The weeks and months that she spent with me

                          Brought me back to where I am

 

      CHORUS:               It’s always hard

                                      Sometimes there’s pain

                                      And sometimes it just gets old

                                      Call me Survivor

                                      And get out of my road

 

      VERSE:      When I came out of the coma

                          They all talked about my luck

                          On my way to Arizona

                          I was rear-ended by a truck

 

      VERSE:      Iím still working on my walking

                          And like a child I had to learn to eat

                          Now I do my share of talking

                          But for a year I couldnít speak

 

      VERSE:      They say be thankful youíre still living

                          Sometimes thatís all they say

                          But I say Somethingís taken somethingís given

                          It helps me make it through the day

 

      (Karl Williams (ASCAP))

 

      © Canny Lark Music 

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MADELAINE - 0000 - posted 2008.07.06


Triathlons After Brain Injury

 

Brain Injury and triathlon are not two terms that one would normally expect to find in the same sentence, much less applied to the same person. In fact, if you were talking about me, you probably would not have paired my name and the word triathlon BEFORE my TBI much less afterward, when walking a straight line was a challenge. But then, one thing I have learned, life surprises us.

For those who might not know, the sport of triathlon requires an individual to consecutively perform a swim, a bike ride and a run. As such it is often called an endurance sport, though distances and difficulties of each of these tasks varies considerably. Some races consist of pool swims and short, flat bike and run courses, usually under 15 and 4 miles respectively. Other events are serious challenges, the most famous being Ironman Hawaii, a 2.5 mile swim, 112 mile bike ride and a 26 mile run. The sport of triathlon has grown considerably in recent years and events of all durations can be found during warm weather throughout the country.

My foray into triathlon came about 18 months after my accident. While I had run for years I was no athlete; my jogs, at best, might be described as a 'fast perambulation'.  Furthermore, at the time when I signed up for my first tri  I hadn't ridden a bike in 10 years and have never even had a swim lesson (though I had some rudimentary exposure to open water).  Ignorance was indeed bliss.

One might then reasonably ask, what ever compelled me to commit my TBI surviving self to such a task? Well, it was simple and serendipitous enough in its start.

My accident left me, in addition to my TBI, with damage to my left ankle, restricted motion in my neck, a loss of balance, and a tendency to get lost a few blocks from my house. However I still had a strong need to be active.  As soon as I was able I had tried to return to daily runs, but the damage to my ankle made it too painful. Wanting to do something, I dragged my old gearless ToysRUs bike up from the basement and took up what I called 'riding'.  If my running style is a mere imitation of that particular sport then  my riding skills were even more removed from being a TourDeFrance contender. I pedaled genteelly, looking more as if I were off to tea in the Cotswold's than one training for a race. For me however, the fine art of balancing on the bike was a significant victory so I didn't give much heed to appearance or speed.

After experiencing  a couple of months of this running & riding routine I stumbled across an ad for a triathlon. I was deeply in need of a goal at the time, feeling that my recovery had plateaued but that I was still far from being myself. Reasoning that I was doing 2 of the 3 sports already I figured, 'how hard can swimming be?' (I admit I ignored the correct answer to that).  My only concern was my limited ability to turn my head; so I sought permission from the race director to use a mask & snorkel (instead of freestyle). After permission was granted and I took a trial lap or two around the local pool I signed up.

Triathlon proved to be a major turning point in my recovery; physically, cognitively and emotionally. It provided me with a goal but it also gave (and continues to give) a lot more. A TBI survivor taking up triathlon is  not so far fetched as it might seem; the tri community is very embracing of challenged athletes. Indeed triathlon history is filled with stories of individuals who have a variety of disabilities, from loss of limbs, chronic illness (Jon Blais completed an Ironman with ALS), cancer and yes, paraplegics and even quadriplegics have participated (with assistance).  Because triathlon is, for the majority of us, more about finishing than about where you place, it is also more about your inner spirit than any innate abilities. Given that, a sprint triathlon is a very doable goal for many people - but please, be advised, no one should do a triathlon without medical approval.  

Triathlon however can do far more than simply provide a handy goal (and that is not to be dismissed lightly). While it has long been known that physical exercise is good for your health this is especially true for the brain injury survivor. Research studies have shown that consistent levels of aerobic activity support neuron/synapse development for the brain injured. In my own experience triathlon also helped with sensory management. By incorporating three very different sports with different muscles and skill sets, training became a form of sensory integration, strengthening my brains ability to process input data. My triathlon training also benefited my concentration abilities. Working on a given event I had to break actions down to their smallest level, developing techniques to address the various obstacles I encountered. Whether because of the physical nature of these activities or because I was less concerned about 'doing well' than simply 'doing' I found it easier to train my attention skills with this process.

In addition to the cognitive and physical benefits I also gained a lot of emotional strengths. Despite my enthusiasm for signing up I was very intimidated by the prospect of the actual race; fear of the water (I will tell you that I did give the water rescue dogs some excitement on race day) , worry about falling off my bike (I had a lot of practice with this - ALWAYS wear a helmet!), embarrassment to ask for help (a biggie for me) and especially an overwhelming desire (many times) to say 'I can't do this' and go eat  an ice cream sundae instead.

Not surprisingly these realizations about how my mind could sabotage itself carried over into all aspects of my life. I came to recognize how easily we can be held back by fears (real and imagined), how worrisome future predictions just waste energy and sap our inner strength, how pride can both help and hinder and mostly how the way to get from point A to point B, no matter where they are, is one stroke, one pedal, one step at a time. I also found a lot to inspire me; taped to the handlebars of my bike are a series of photos, pictures of the women in my life who's strength I admire; my mom and daughter, friends who have overcome (and not) cancer, and people who have just been there for me. Self, I came to realize, was not so much the person who crossed the finish line, but rather the person who first thought, 'let me try'.  

Triathlon has other benefits as well, particularly in changing the image of TBI, both of ourselves and from others. To participate in triathlon allows the TBI survivor to identify with something that is outside of their injury; it gives a person a new 'label', one that focuses on achievement and not loss. The training process and the race event are wonderful times to recover socialization skills, giving TBI survivors a chance to share the thrill of victory with others. The feeling, as one heads towards the finish line accompanied by a cheering crowd, is amazing. My fellow athletes were equally supportive, offering encouragement throughout the race. Even those athletes who require partners to complete the race come to feel the accomplishment and joy of that moment; there is no one there who does not recognize the effort it takes to simply participate.

TBI survivors, no matter how far they have come, tend to struggle a great deal with their identity and a huge sense of loss. Re-integrating into the world is important. That first triathlon was a huge mountain for me, but I finished (with probably the longest time in the history of sprint triathlon).  Afterwards was the first time since my accident that I had felt whole again. In one of my favorite races they call out your name as you finish. Every time they do that, no matter how often I hear it, I break into a grin. I may be the slowest person there but even more I know that when I cross that finish line, no matter how I got there, I am a winner; I can call myself a triathlete. 

As a side note I want to say that I do not race as a challenged athlete as I feel that my physical capacity puts me into the standard 'age group' category. I also act as a mentor to a number of women 'triathlon newbies'. While these women are not handicapped many experience the same self-doubts that TBI survivors do. To encourage them I let them know that I am a very ordinary person with no special skills or talents, indeed my training efforts are often comedic. None of this is to downplay brain injury however. I fully recognize and acknowledge how very difficult it is for TBI survivors  to perform many everyday activities, much less triathlon. Nor does everyone with a TBI need to do a triathlon to prove anything to anyone; triathlon is simply one tool, one that worked well for me. The real goal for any activity is always about self empowerment and that is the message I try to leave with any one who attempts triathlon; ' Qui audet adipiscitur', she who dares, wins.

Alas, as another side note, this season, unfortunately, residual problems from my accident have, for the first time, interfered with my ability to train and race. I will hopefully soon have access to the resources to enable me to get back on track. I continue to stay active and to mentor and will let you know if I do race, I try to do a fund raiser in August.  

If there is anyone who has further interest in triathlon and the challenged athlete let me know and I will see what can be done to assist you.  

I urge everyone; caregivers, TBI survivors, family, providers to watch the following videos:

http://youtube.com/watch?v=uadKAxUKZII&feature=related (part 1)
http://youtube.com/watch?v=w9DK2FFE9HE (part 2)

This is an incredible story, not meant to make anyone feel that they have to do what this father has done, but just a wonderful story; http://youtube.com/watch?v=oyiApzjIuzw&feature=related. Additional stories of determination and inspiration: http://youtube.com/watch?v=oLdi0hMkinM&feature=related and http://youtube.com/watch?v=yn816YARuyI&feature=related.

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TIFFANY - 2005 - Philadelphia, PA - posted 2007.10.13

 

Hi! My name is Tiffany. I  am twenty-two years old. I was injured in August 2005.

I was going to the Community College of Philadelphia and I attended a job fair there. I noticed a Girl Scout table and I was interested as I used to be one. I went though the whole application process and I was very overjoyed once I found out that I was hired for the job.

The job was located in Gilbertsville, Pennsylvania. I had to stay up there while I was working. I was thrilled about that but the only thing that I didn't like was I had to miss a lot of church activities.

The day my car accident happened, we were driving down Route 76 going towards the camp. The driver fell asleep and we impacted a utility pole.

I sustained a traumatic brain injury as a result of the car accident.

There were things in the back of the car which I didn't know about when entering the vehicle.  When the impact happened,  the objects all came forward and hit my head. I was knocked instantly into a coma that lasted about seven to nine days.

I had eaten previous to the car accident. When we hit the utility pole,  I regurgitated everything that I had eaten and lay in it so my oxygen was cut off - I was not breathing at all. When the rescue squad came to the car,  they got the other two people out and left me still lying there for an unknowm amount of time. They had to come back for me and then they took me to Lehigh Valley Hospital.

I stayed at Lehigh Valley Hospital for awhile - I  am unsure of the exact amount of time.  Next, I was being transported to another hospital. The ambulance ran out of oxygen for me so they had to stop at another hospital so they could get some more oxygen. After that I was transported to MossRehab Hospital on Tabor Road.

I stayed at MossRehab for a little over a month and have been out of there for two years now.

Ever since I was a patient at Moss I  have been involved a lot with them. They are just so good with brain injured patients. Their care is fantastic.

I am in the process of making myself better. Each year gets better and better.

It has been two years now and I am so glad to still be here.  

I have learned that a traumatic brain injury dosen't mean that your life has to stop, but that you learn things differently than other people.

With us it just may take us a little longer,  but we will get it eventually.

I hope others read my story and realize that they can get better such as I did. 

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 JOHN - 1993 - Easton, PA - posted 2007.03.17

 

John survived a traumatic brain injury on July 10, 1993, when he was 22 years old.

At that time, John owned a full-time  lawn and landscaping business and was also a college student at Shippensburg University. He was looking forward to a career in environmental science and felt life was great. He felt he had everything going for him.

Unfortunately, he got into a car with college friends, and the driver was drunk. The car crashed into a pole, and the pole penetrated three feet into John's side of the car. While the driver had only a few stiches and bumps, John had a 1% chance of survival.

John was taken to Hershey Medical Center and then Good Shepherd Rehabilitation Hospital. He spent three months in a coma, then learned to talk, walk, eat and dress himself again.

As part of his rehabilitation, John took classes at a community college, and then returned to Shippensburg to finish his degree. He has worked ever since at jobs with increasing responsibility.

As John says:

"Now that my life has changed, my goals have also changed. I want to share my personal story with audiences who believe they are invincible.

"During my presentation, I show a videotape which depicts my struggles through the numerous stages of rehabilitation. My goal is to use my experience to illuminate the danger of drinking and driving, and other dangerous actions. I teach audiences to take two steps back and think before taking an action that could ruin lives.

"My presentations are approximately 40 minutes in length. My goal is to make a lasting impression on the audience and hopefully prevent similar tragedies from occurring."

John's website is located at www.johndibiagio.com.

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JEANNETTE - 1974 - Pittsburgh, PA - posted 2006.11.02

 

Jeannette is 86 years old, a 32 year survivor of a "closed head injury". Her injury occurred as the result of the "malicious mischief" of 4 high school male students who were put out in the hall for disobedience.  The hall was supposed to be supervised by the assistant principal who was in her office studying for her principalship.

"As I was ascending the marble stairway from the first floor, an industrial garbage can was thrown from the second floor and hit me on the rim of my skull, knocking me face down onto marble steps.  I was unconscious for perhaps ten minutes.

"At that time, 1974, there was no knowledgeable source that could explain or help with the bizarre symptoms that followed:  excruciating pain, personality differences, and vision, hearing, thought, speech, comprehension, concentration and equilibrium  disorders.

"It wasn't until about 7 years later that professionals, families and survivors organized the Pittsburgh Head Injury Support Group, an affiliate of the National Head Injury Foundation.

"Prior to my injury,I had been  Director/Teacher of P.J.C. Nursery School in Pittsburgh for 13 years and had just accepted a permanent position with Churchill High School. I also planned to further my education and eventually become a Guidance Counselor.....but that never happened. 

"My employment ended, but my determination to overcome this adversity was unending

"When the National Head Injury Foundation published the first edition of TIPS (Traumatic injury Personal Stories) my personal story was the first story. The second personal story was by a male special education teacher who had sustained a head injury in a car accident. The third personal story was by a mother whose daughter, an artist, had sustained a head injury, then became disillusioned by medical field's inability to understand and help, and committed suicide.

"I maintained my membership in the National Head Injury Foundation and was actively involved for many years, sharing self-discovered personal strategies, etc.  As Liaison Officer of the Board of Directors back in the 80's, I spoke for the survivors who couldn't speak for themselves. I wrote a column for the monthly newsletter entitled "Care To Share". A presentation that I gave at a Support Group Meeting was published in the Pittsburgh Head Injury Newsletter and subsequently published in the national newsletter. Along with the Hot Line,  I devoted my efforts to giving support, inspiration, determination and hope. 

"Hopefully there is plenty of help now. Modern technology is wonderful - but the greatest machine of all is the human body.

Help your mind to help your body. You'll be amazed at what you can do."

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JAMES - 1992 - Reading, PA - posted 2006.10.03, revised 2007.06.17

 

I went to Pennsylvania State University and received my BS degree in Communications in 1992. I was doing a Public Relations Internship at Longwood Gardens, when soon after, I had my accident. I didn't really like being a PR man, but I loved the plants. One of the only recollections I have of the garden is the smell of orchids from the Mediterranean Garden. I've read that your sense of smell is the sense most connected to memory.

The night of my accident, I had dinner with my sister, and an hour-long drive back to Longwood. Before returning to Longwood Gardens, where I had temporary residence, I stopped at a bar to sing some Karaoke. It was February 1993, and there was ice on the ground so I drove slowly, but still lost control on a patch of ice, and hit an embankment. I was not wearing my seatbelt, so I hit the windshield face first. This probably caused a minor head injury, but was not the direct cause of my anoxic brain injury. I should have stayed in my car, as I had a blanket in my trunk for warmth. Instead I left the car seeking help, not knowing the extent of my injury.

I frantically pounded on doors. The residences were mostly occupied by senior citizens, who were either sleeping, or afraid of a bloody faced young man screaming for help. I started to feel the effects of my concussion, and knew I was getting cold, as my hands were inside my windbreaker, and knew I had to return to my car. As I was walking back to the car I began to feel tired, lost, and frightened. I thought if I sat down for a minute, I could recollect myself. I sat down in the snow and passed out from my concussion.

In spite of a bright full moon, I wasn't found until the next morning, about 6 hours later. An older gentleman driving by spotted me out of the corner of his eye. He covered me with a blanket and called 911. The ground crew, took my vitals, found me to be 20 degrees Celsius (about 68 F). I was rushed to the trauma unit and it took about 30 minutes to restart my heart. I was placed into a month long, drug induced coma, and family members were told that if I recovered, I might be a vegetable for the rest of my short life.

 My sister-in-law Susie, who was a school nurse, sensed that I was still inside my comatose body. She took a leave of absence from her job, and became my private nurse. She worked my joints, so they would not lock up during my coma. She played me most of my CDs through a portable player. I am even more of a music fan today, than I was prior to my accident.

When I woke up from the coma, I could not speak. I wrote down on paper that I felt like I was dreaming, probably an aftermath of the coma inducing drugs. I would also hallucinate and have 'night terrors', believing that people were trying to break in through the window. I wrote frantically that I could see many tiny vampires crawling on my bed. It wasn't all bad, however. The first thing that I wrote I wanted was a coke. I remember that the standing frame was very painful.

The Rehab was Mennonite; so there were religious pictures everywhere. While still in my wheelchair, I pointed to a picture on the wall of Jesus, and reached for my notepad and wrote 'I know him'. Who knows? I had been dead for half an hour.

After 4 months, I wanted to return home. I moved in with my brother, Rich, and Susie. Emotionally, I wasn't ready to return home. I would oppose going to rehab, and would fight the rehab specialists, saying that I did not need help. I was a great deal of trouble for my family, and every therapist, and my family decided to send me to a group home in _____, near my college. They said I could be near my old college friends. _______ is very cold. That was the last place I wanted to be, having just nearly frozen to death. My old college friends had their own lives now, and did not want anything to do with a brain-injured person.

The group home I was placed in was a very twisted place. I witnessed physical abuse, and had a resident confess to me about sexual abuse; the place was also filthy. I sent a complaint to the State, and the facility was fined. Soon after that, I tried to run away and was sent to a mental health hospital, following which I was handed a one-month eviction notice. The only place offered for me to live was the City Mission. Luckily a friend I had met, in the year I was in ____, let me stay with her family. She also an experienced writer and helped me write a detailed 3-page complaint against the facility

A month later I was living at home again with my family who knew that I what I truly wanted was to live on my own.

Six months later I had a place of my own. It is in a poor, dangerous, drug filled part of a nearby city, but the apartment building itself is safe and is near public transportation. I have had menial jobs, but nothing fulfilling. So for now I spend time volunteering at a local library.

I have tried to go back to college, but cannot get financial aid. I do not qualify because I have a pre-existing BS degree. I get physical, speech, and cognitive therapy through the Independence Waiver. Filling out this enormous application by myself, felt like writing the Declaration of Independence. I also go to a monthly brain injury support group meeting, at Health South Rehabilitation.

I have learned that I am an anomaly. I do not know why I survived and am doing so well, comparatively. It may have been the cold, my physical fitness, my age, my determination, or a combination of all these.

Everything has become so much harder now for me to do. I have left sided weakness. I sometimes trip on uneven walkways. I can't play the guitar anymore, or type fast. I have dysarthria, which simply means that I cannot speak clearly, especially when talking fast. However, my memory has improved much more then anyone could have expected. Right after my injury, I would get lost easily when I tried to read. Now I read all the time.

It has been a struggle since the day when I first awoke from my coma. I am alive, proving that every doctor who falsely suggests that anoxia means death, is wrong. Never listen to a physician's negative prognosis. Go with your gut feeling. It is usually right.

If you truly believe that your family member has a chance to improve, then fight for it!!!

My family helped fight for me.

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BILL - 1988 - Allentown, PA - posted 2006.10.01 - passed 2011.06.29

 

I was brain injured on 1-11-1988 on my way home from work at Mack Truck, Inc.

I was an unbelted passenger in a car that hit a truck that pulled out in front of us as we were going 45 mph. I received a closed head injury and fractured my back.

I spent 10 days in Lehigh Valley Hospital and a year and a half as an out-patient at Good Shepherd Rehabilitation Hospital. I lost my drivers license for 5 years and walked to Good Shepherd 3 times a week (3 miles each way) to volunteer for 6 years.

Since then I have been involved with brain injury, served on the board of Brain Injury Association of Pennsylvania, Inc., for one year and have served as president of the Lehigh Valley Brain Injury Support Group for the past 10 years.

I help others with traumatic brain injury (TBI) any way I can - speaking, on TV, and making video's and CD's about TBI.

Never give up, there is a light at the end of that long tunnel.

Bill

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PAT - 1989 - Telford, PA - posted 2006.09.01

 

These three poems are printed with Pat's permission.

Please email Pat at Email ABIN-PA for reprint permission if you would like to use them.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THE LONG ROUGH ROAD - 10/07/1990

It's a long rough road back to recovery
Following head trauma.
Things once seemed as second nature
Now must be analyzed, studied and practiced.

Loss of balance, dexterity, memory and
Practical thinking are chores to overcome.
Long after the broken bones have healed
And the scars have begun to fade,
The reality of brain damage is apparent.

Physical therapy helps to retrain the body to
Move in a normal fashion despite the mental disability.
I wait, wonder, and try to do as I did before.
I see my life as it was and feel how it is now.

I grieve over what's been lost and what could've been,
But rejoice over what I've gained and
Where it may lead me.

Where will it lead me, this road I've landed on?
Life's future is interminable,
But I am prepared to travel
The long rough road ahead.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

SURVIVING - 03/18/1998

I am a survivor of TBI.
Some say, "It can't be that hard to get by."
Walk a mile in my shoes and you will see,
That just living a life, takes all of me.

It's 9 years past and
I'm doing quite well.
I'm thankful to be a wife, a mom,
And alive to tell.

A mother of two, at age 34,
Facing infancy again, right down to the core;
Wearing diapers, learning to walk, talk, and swallow.
Being taught, just how to put on shoes, and to follow.

Life hasn't been easy
With this brain injury of mine.
It's caused those who love me
To walk fine line.

After coma, my husband had a tough time coping.
Instead of support, he faced denials ongoing.
Of 4 main therapies recommended for me,
Only 1 could be chosen that insurance would see.

Months in the hospital,
Months of Rehab. to follow,
Years of striving,
To make a better tomorrow.

Who can know what the future
Holds to instill.
No one plans for a tragedy,
Or how to pay the bill.

It's 9 years post and
I'm doing quite well.
I'm ever so thankful to be a wife, a mom
And alive to tell.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

LOOKING BEYOND DIVERSITY INTO TOLERANCE - 08/11/2005, revised 09/13/2005

By listening, having patience, empathy, and respect,
We can bring the truth about what we believe to others.

Accept people as they are right where they are at,
Rather than forcing them to meet our expectations of them.

Tolerance is not just putting up with the people you don't like,
Pretending that the differences of your most important issues,
Really make no difference at all.

It is standing up for what we believe in,
Without force or with any misrepresentation.

Air issues before they turn into resentments,
Promoting calmness to short-circuit misunderstanding.
The simple courtesy of reason is often the most troublesome to convey.

Watch our reactions in times of frustration,
Take the initiative to make a commitment to set an example of honesty.

It's not our job to make everything go right in the world,
But to "speak the truth in love",
And hope to persuade.
Honor and integrity for all.

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DAN - 1991 - Philadelphia, PA - posted 2006.08.10

 

I graduated from Northeast Catholic High for Boys and then had two years of college at Settlement Music School. After spending some time in law enforcement,  I realized my calling was in music. I auditioned for Sky Dancer, a band in South Dakota. We opened for a lot of big groups, two of them being Blue Oyster Cult and Santana. 

After 12 years of playing music on the road, our family moved back to Philadelphia, where my wife had our second child. He was born with a heart defect. He had his surgery at CHOP but we lost Danny at the age of one. Our third child was Katie who came along not far after Danny. 

While playing music around the city and down in Wildwood, NJ, I got a job in an oil refinery in the city. I gave up music for the benefit of my family, but with all that, ended up getting shot in the head in 1991. I ended up in a coma for 15 days, then at MossRehab for 11 months.

After a year at home trying to get better and maybe be able to walk again, I began to figure out what I wanted to do with my life. I started an Alumni Association for patients and former patients at MossRehab. I began receiving services from Jewish Employments and Vocational Services (JEVS). 

Now, I volunteer my days at MossRehab of Elkins Park, mostly for the Therapeutic Recreation Department. I have been volunteering with MossRehab for 10 years so far, with 9 years in Therapeutic Recreation. I give back what they did for me as a patient. I love the people I work for and they care about me too, and everyone that works there all the way from the supervisor in the volunteer's office to the supervisor in Therapeutic Recreation. 

In 1999, I became a member of the Brain Injury Association of Pennsylvania and did some volunteer work for them. In 2000, I was appointed by the Governor to serve on the Community Living Advisory Council (CLAC) in Harrisburg. I am a good advocate for brain injury, with MossRehab having one of the best brain injury rehab floors in the tri-county area. 

In 2003, I was elected to the board of the Brain Injury Association of Pennsylvania and am still serving there. 

Since 1998, I have also been volunteering with the Philadelphia Narcotics Unit's program "Head Up", almost 10 years. We go into the school system, teaching kids and parents about drug use, and teaching the parents what to look for in a child on drugs so they can get their child help.

I get around in a wheelchair because my walking has not come back to me yet, but you can not stop living due to that.

You must never give up. Your mind and body must fight to recover as much as possible. 

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ED - 1989 - Pittsburgh, PA - posted 2006.08.05

 

Ed's background includes a college degree, several foreign languages and extensive computer training. He was previously a negotiator, computer specialist, and musician. 

Ed experienced coma due to brain injury three times in his life, the last for ten days in 1989.  

Ed acts as an advocate and resource person for traumatic brain injury survivors and their care-givers. He offers information about care sites, support groups, conferences and events. He also provides peer-support to fellow individuals who have survived this devastating trauma. 

Ed is a well regarded speaker on the topic of "The Hidden Scars of Brain Injury" and thus promotes  awareness in the community about this 'silent' epidemic.

Ed has volunteered with the Pittsburgh Area Brain Injury Alliance since 1996. He served on the founding board of the Brain Injury Association of Pennsylvania from 2001 to 2006.     

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BARB - 1989 - Lansdale, PA - posted 2006.08.04, revision 2006.10.01

 

I was rear-ended by a drunk driver at a traffic light on 09/10/1989.

I needed to work on swallowing, speaking, seeing, perceiving, walking, strength, handwriting, reading, math, remembering, being organized, thinking about consequences, counting out money and predicting what change I would get back, seizures, food shopping, etc.

My serious rehabilitation efforts extended over about 10 years and included MossRehab, chiropractic, physical therapy, speech therapy, voice therapy, neuropsychology, psychiatry, neurology, occupational therapy, swallowing therapy, cognitive re-training, vision therapy, vision biofeedback, artwork, continuing education courses, college courses, Shiatsu, Polarity, CranioSacral, Trager, homeopathy, volunteer work, etc.  I continue to get help when needed.

In 1999, I started my efforts to organize the Brain Injury Association of Pennsylvania, Inc. On 01/01/2001, BIAPA became official and I  served as an officer until June 30, 2004.

During that time, and since, I have tried to help those in the brain injury community through systems advocacy, mentoring, and collaboration with other organizations. These efforts led to the Acquired Brain Injury Network of Pennsylvania, a loose organization of Networkers who are survivors and family members - and this website.

My life since brain injury is different from before. I learned to use the computer for email, e-lists, the Internet, and FrontPage. Also, I continued to study homeopathy and now have been teaching the subject for many years.  I regained my ability to play the piano again in about 1999, started teaching, and now have 17 piano students.

In the 17 years since my accident, I have put a lot of effort into making progress - and as a result, I have an interesting life. 

You can do the same. Always look forward. Continue to create and explore new opportunities. Survive with pride!

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ANNA MARIE - 2001 - Schwenksville, PA - posted 2011.01.29

 

I loved my family, friends and job. One day the rug was pulled out from under meÖalmost literally. My name is Anna Marie Childress and in December 2001 I began a difficult journey that continues.

I have brain injury. I was hospitalized with a severe illness. Unaware I was ill, I had a near death experience. It was very peaceful, warm, a very bright light came through a beautiful stained glass window and it was as though here was where I should remainÖsurrounded by a light that was warm, peaceful and I was encompassed by the light of my higher power. That was not to be.

Upon awakening after some time in the ICU, I was transferred to a regular room. I needed to get up to use the restroom. I slipped and hit my head on the floor. Apparently, the evening before Iíd been told to stay in bed unless Iíd asked for help. I decided to get up, not remembering the previous eveningís instructions. I stood up and immediately fell forward landing flat on my face. There was lots of blood. I could not get up and two nurses literally threw me into bed, threatening that if I got out of bed, theyíd tie me down again. BINGO...visions of being tied down. I wasnít aware of where that vision came from until I lay in my bed dirty, bloody, in a fetal position. Iíd been tied down before. But where, why? As I lay on my side it came to me in a vision of my earlier days in the hospital, though I thought Iíd been there for only a couple of days. I had no power and knew it. I was afraid. I had nightmares that continue to this day.

My journey has taught me many things. Physicians practice medicine. They are people and people donít know all things. Iíve met some very kind, understanding doctors. Iíve seen otherís who have advised me I would never be successful, I should even appreciate that I recognize my family. Iíve been told by others that they could see nothing wrong with me or that there was nothing they could do for me. Iíve learned to listen, try to explain that many brain injuries are not seen and I can hold an actual conversation. Most are not convinced. I leave their offices with greater determination and consider them ignorant.

There are a great many good things that have happened to me, though they are usually precluded by deep sadness. Where are those people I thought were my friends? Perhaps they donít know what to say, or get busy, or I canít keep up. They were not friends. In reality, they were acquaintances. Only my very best friend, Barb, and my family have stood by, though they donít always understand. In the past few years though, I have made other friends who understand and support me.

Iíve also done things I would never have had the opportunity to do before including spread the word about Brain Injury. An educator by profession, I now speak about my injury, my successes that Iíve reached for, and the things I still canít do. Iíve had the opportunity to speak to a group of people at a convention. Iíve been able to be away from my husband for one or two nights, something itís taken nearly nine years to accomplish.

From time to time I become restless, resentful, fear for the uncertain future. This is part of my life now. It is very different from my life before TBI. I have found ways to overcome the depression, anger, fearfulness and all that accompanies Brain Injury. Something Iíve been remembering is that there is light.