Profiles

JEANNETTE - Pittsburgh, PA - posted 11/02/2006

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."

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.

Jamie Burke

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.

PAT - Telford, PA - posted 09/01/2006

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. Each line is separated by ~~~ to save space.

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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.

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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.

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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.

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.

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.

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!