Did You Know? Traumatic Brain Injury Information by Freedom House

Freedom House is a non-profit organization formed to provide housing for disabled persons who have survived traumatic brain injuries (TBI). This video highlights some of the shocking statistics about TBI in the United States.

Freedom House Survivor Stories Part 6

RON MAYER

Following, is the story of Ron Mayer beginning with the accident that changed his life forever, and his journey back to being an active and productive member of his community. In 1971, Ron was riding his small motorcycle to his neighborhood community center to practice basketball. On his way, he rode into some sand that was left on the street. He went into a skid and was thrown onto the pavement. He sustained a brain injury that left him with short term memory loss and a tremor in his right hand. In addition, his left hip was injured. Ron considers himself a careful rider, but of course, not on sand! Fortunately, there was a doctor and nurse close by at a Pop Warner football game and they quickly came and gave Ron medical help until an ambulance arrived. He spent the next three weeks in a COMA at Sharp Children's Hospital, followed by seven weeks in rehab.
After being discharged from children's rehab, Ron lived at home while continuing to seek treatment to improve his short term memory. He required a lot of supervision, including help with mood swings.
The accident occurred during Ron's junior year in High School. He had been and honor student with a year ahead in school. After three and a half months in the hospital, Ron was still not well enough to return to school. He spent the rest of the year with a home teacher.
At that time there were no programs or resources for people with brain injuries. However, through his high school, he found out about a relearning foundation for slow learners. He spent three months in the program part time working with a tutor. With the help of the home teacher, he returned to the twelfth grade the following year with a requirement of three subjects. With the help of his tutor, he finished High School with his class.
After High School, Ron went on to Mesa College for six years, taking some classes over, and earned a two year AA degree. He worked in the printing field for about five years. In those days, it was very difficult for disabled people in the work field...They weren't accepted very well. He was let go from many of the printing jobs...they required too much lifting and more speed than Ton could handle. His last job in the printing field was at a bank. He worked there for three months and again, they informed him that he was too slow. After that experience, he decided that the printing field was not for him.
In 1978, Ron decided to return to college. He went to Point Loma Nazarene University and stayed in the dorm to regain his independence. He was one of the college photographers and worked on the yearly Annual, as he had experience in photography in Jr. High School. He finished the junior year. In spite of finding the bookwork quite stressful, Ron felt it was a great year. Then, in 1987, he returned to Mesa College, this time to take Hotel-Motel classes. He went for three years and did so well that the teacher offered him a desk clerk job at Hotel Del Coronado.
Ron worked in the hotel field for about six years, holding many jobs during that period. After his last job ended, Ron drew unemployment for about a year. During that time, he attended the Brain Injury Foundation meetings. One day, there was a teacher from Mesa College talking about a new program called ABI. The following fall, he began attending the ABI classes. They proved to be a valuable experience, as they gave him reassurance to look forward to the future and focus on improving himself.
At that point, he decided he wanted to learn the computer. Through ABI, he was enrolled in a computer class for a year. After his computer class was over, Ron applied for a job at Miramar Naval Station doing Accounts Payable and Receivable. He was hired, but the job required more speed than he was able to handle, so the boss gave him a new job doing payroll and ordering office supplies. Ron worked there for three years, enjoying the job very much. However, as often happens, there was a change in the office and many people were laid off, including Ron.
Then, Ron's boss from the Naval Station suggested that he should go on SSDI, as he should have enough credits from all his jobs together with his medical history, to qualify. That proved to be true, and he was able to go on SSDI.
Today, Ron is doing very well and is involved in life. He has a part time job in the video field, and volunteers making videos for the members of the Brain Injury Foundation. He still retains some loss from the accident that injured him so many years ago, but he has a positive outlook and continues to strive to make each day a good one. Ron has come a long way in the 36 years since his accident and is very grateful to his parents for always being there for him, encouraging him to keep going and to not give up.
Ron's father, Leslie Mayer, was one of the original group of people who created and started the Brain Injury Foundation. After that, came the Brain Injury Support Group, that gave survivors an opportunity to meet with and talk to others who have gone through similar experiences. He was a great mentor and an inspiration to all who knew him. He passed away in 2005, and will be greatly missed.

Freedom House Survivor Stories Part 5

MICHAEL HANSON

In October 2002 Brian and Michael were involved in a horrible car wreck just two blocks from home as they were returning from a weekend with their father. While making a left turn, they were broadsided by a car that was involved in a street race and traveling at 120 miles per hour with its headlights off. Although theother driver applied his brakes, his speed at impact was approximately 80 miles per hour. Brian and his girlfriend Shanna, both 19, were killed instantly. Michael was severely injured, suffering two broken legs, afractured pelvis and a severe “closed head” injury with a diagnosis of “vegetative”.

The drivers of the racing cars were charged with 2nd degree murder and their trial was broadcast on Court TV. They were ultimately convicted of Vehicular Manslaughter and sentenced to 6 and 9 year prison sentences. As the result of outcry from citizens regarding deaths resulting from street racing, more rigid laws have been implemented both locally and at the state level.

Michael’s recovery over the past 4 ½ years has been nothing short of miraculous and he continues to improve in all areas. Debbie and Michael’s father, though divorced, quit working for the first year after the accident and spent full time with Michael’s recovery both at his bedside and participating in the various phases of his recovery. Michael attends physical therapy 3 to 4 times per week and works out at home.
He has returned to school where he is learning job skills and is back to playing his guitar and computer games. He is also learning cooking. His father has returned to work but since Michael requires a full-time caregiver, Debbie stays at home and has not been able to return to her regular profession.

Michael’s progress has been followed by the local media and he and Debbie have been interviewed many times. They have spoken about the dangers of street racing and the realities of long term recovery from severe injuries to local high schools, and the Rotary Club. They have also participated in Traffic Victim’s Remembrance Day and the Think First Accident and Injury Prevention Program at Sharp Memorial Hospital. They have participated in fund raising media events for Sharp Memorial Rehab Center, Race
Legal at Qualcom Stadium and the Challenge Center.

Debbie is hopeful that FREEDOM HOUSE will be successful in establishing a residence facility where Michael can continue to work toward independent living. She intends to re-enter the Nursing profession as soon as she is able and looks forward to working with FREEDOM HOUSE toward that end.

Freedom House Survivor Stories Part 4

JAMES VICTOR BALMER - By Julia Balmer

In 1974 my husband Vic, my three children from my previous marriage, and I, left the shores of England to live in The Hague in Holland. Vic had accepted a job with an American company they wanted him to work in Holland before moving us to the USA in 1977. We bought a tall, skinny typical Dutch home with seven bedrooms and a tiny garden on the outskirts of the city. The children were enrolled in the British school of the Hague and we all began having Dutch lessons.

In 1976 Vic and I had been together for 6years and married for three, we decided it was time to have a child of our own. After an amazingly uneventful pregnancy and easy birth James Victor Balmer was born.
He was instantly adored by us, and by his three half siblings, Helen who was 17, Steven 16, and Trevor 13 too. He weighed in at 9lbs and was a gorgeous, happy healthy baby. James was 3months old when we moved to the USA and settled in Vermilion Ohio. We bought a lovely house on a small lake, there were about twenty other homes around the lake, the neighbors were very nice people and we became close friends with many of them. We were invited to clam bakes, Lake Erie perch fries, lamb and pig roasts and other events too numerous to mention, James would come with us. He thrived on the love and attention from his family and our friends. We went overboard with the “tooth fairy” and “Santa-Claus”events, to this day James still has the tiny notes with minute writing from his tooth fairy “Tinkerbelle”. We tried to teach him to be kind, caring, generous and loving. He was taught not to kill any living creature which may explain why he became vegetarian at the age of fifteen and is now a “Vegan”. We really enjoyed James’s childhood and documented every step of his way with photos, films and diary notations. My other three children were born with very little space between them so their early days are just a frantic blur whereas James’s were tranquil and precious. He spent a lot of time around adults, his brothers and sisters were much older than him, so when he was three years old we enrolled him in a nursery school so he could interact with children of his own age. He made friends easily and had a crush on his teacher. His elementary school years seemed to fly by. He did very well in all subjects and made many friends. He joined the cub scouts too. The lake would freeze in the winter so the children would ice skate. In the summer James and I would swim or take the canoe out and paddle around in it. He and his friends would try to catch the turtles and fish. When he was nine we bought him a tiny motor bike on which he would zip around the surrounding woods wearing a red helmet almost as large as he was.

In 1987 when James was 10 Vic was offered a job in California so we moved. Initially, James did not want to go because he had his friends, liked his home and his school. Vic’s new company flew us out to California to explore. James discovered boogey boarding and the skate board park which at that time was next to the Del Mar fair grounds and he was sold. We bought a home in La Costa with a swimming pool which we felt would make up for the missing lake. James started in 6th grade at the then new La Costa Heights elementary school. I was more nervous than he was on his first day at the new school. He settled in very well and soon made new friends. He had the lead in his class play “The little Peach Boy”. He had a short spell in Pop Warner foot ball and basket ball but was never really “a jock” as you Americans say. He did however love to boogey board; skate board and ride his bike. He became involved in BMX bike racing for a while and at twelve years old began taking guitar lessons. He went to middle school in Encinitas and
then to San Dieguito High School also in Encinitas. James’s grades were always excellent; he was on the honor roll and gained college credits in high school. With three of his friends he formed a band they called themselves “Useless,” they wrote their own songs, and won the battle of the bands they continued on to play shows at Soma, other venues and parties. They cut a Tape which was on sale at “Lou’s Records”.
The band collapsed when the members went off to different colleges. James took driving lessons we let him drive our van on condition that he came home by 10pm. He would pull into our driveway smack bang on the stroke of 10pm, it was uncanny. He became a vegetarian around this time and would make “Hacky Sacks” on my old sewing machine with his friend David, they also made very pretty beads from “Fimo” clay. He learned how to weld and won first prize at the Del Mar fair for an intricate belt buckle he made.
When he left school he worked part time welding custom made racing bicycles while attending Palomar College where he enrolled in their “Tag” program.

During all his baby, little boy, boy, teenage years James never, ever gave us any trouble. We would wait for it, expect it, but it never came, he was almost too good to be true.

Shortly after starting college he became involved with the Hare Krishna’s. We were upset and blamed ourselves for not including religion in his upbringing. He joined the Temple and became a devotee. He traveled the country from sea to shining sea distributing their literature and lecturing at Universities. He went to India dressed in saffron robes with his head shaved except for the little top-knot. When he visited us, we would try to understand but we found it difficult. He left the Krishna’s after two years, went back to school, got a job in the produce department at Henry’s and moved into an apartment. He began dating a series of pretty girls. He formed a new rock band called “Swan”; he acquired numerous tattoos, pierced his ears, but remained a very spiritual and philosophical person with an intense interest in nutrition.

James met Kristie in 2001. At last he had met his soul mate. They moved in together and love each other very much. They visit us often, usually with their two dogs. They cook us vegan meals and we watch movies. Two years ago Kristie made her dream a reality when she opened a lounge which specializes in organic beers and wine it also provides diverse entertainment from jazz groups to Irish singers. We were all very involved in getting it ready to open. James would help Kristie in the lounge, he also had a small nutrition consulting business and of course his new band “fing”, they had just cut their first CD and were ready to go on tour in February 07, but that was not to be because of the accident.

On December 4th our lives were shattered when James had his terrible accident. We received the call in the middle of the night that every parent dreads. We were also told that a girl had died and initially we thought it was Kristie. We so nearly lost our beloved boy. James’s brain has been severely injured; he was in a coma for almost three weeks, on life support, because his lungs became infected too. The Doctor gave us a very gloomy prognosis because of the severity of his brain injury; he was only a 3 on the Glasgow scale which is used to measure comas. When he woke up he could not move at all, he could not swallow, eat, or speak and he was incontinent. He had a gastro tube in place, a Catheter to drain his urine; he had to wear a diaper, and had a hole in his throat where the tracheotomy had been. His temperature would spike due to the brain injury, he was suffering dreadful shivering spells call “Neuro-Storming” again due to the injury. I can’t begin to imagine how terrified he must have felt, when he became conscious and was able to comprehend his predicament. He had developed painful bedsores too. He lost 50% of his muscle mass and his weight dropped to 132 lbs which considering that he is 6’4” was skeletal.

He was moved to Sharp Cabrillo on December 28th where he has been ever since. Over the past six months James has come back to us slowly. He is still very broken. He cannot walk on his own yet. The muscles in his right arm are contracted so he is unable to move it very well. His speech is very quiet and the pitch is higher than it used to be, he has trouble sometimes finding the words he wants. His memory is impaired. His laugh is strange. He has sudden mood swings, fits of frustration and depression and blurts out things that the pre-accident James would not say. He has muscle spasms which are scary to see. But although there are some personality changes which we have been told is to be expected in Severe Traumatic Brain Injury survivors, our funny, loving, sweet, kind and generous boy is back. He has shown amazing spirit, strength and determination in his attempt to get his life back. We are in awe of his strength.
He gets very frustrated sometimes because he is not improving fast enough and cannot walk yet. We were told by all the nurses and Doctors that his recovery would be long and slow and that we would all have to be very patient. His thought processes are still foggy.

Until recently he did not know that Angie had died in the accident. We were all afraid that he would have a bad reaction or completely shut down. A Neuro Psychologist gave us permission to tell James so Kristie, his best friend Pascal and us gathered around his bed and told him. He expressed his regret and said he felt like a murderer, he asked about her family. However, we are not sure that he will remember what we told him. He remembers nothing at all about the accident and according to the Doctors he never will. We are all very sorry about Angie and our hearts go out to her family.

James has an amazing support group of very good friends from all walks of life and of course he has us. We all intend to be with him every step of the way until along the long road to recovery, James knows that he is very much loved.

Freedom House Survivor Stories Part 3

KELLCIE MACNAMARA - by Barbara C. Macnamara

On December 4th, 2004 our lives changed forever. Our 19 year old daughter, Kellcie Macnamara, was critically injured in an auto accident. Her driver's door was T-boned at 70-80 mph. It was as though she had had a bull’s-eye solely on her. Unknowingly, I was stuck in the traffic jam from her accident.

The paramedics found her with a slight pulse and a blood pressure of 60/0. They rated her as a 4 on the Glasgow Scale. This is a scale of 1-15 which rates responsiveness. Things looked quite dire.

She had emergency surgery for internal bleeding due to a ruptured spleen. Next they addressed her other extensive injuries: lacerated liver, bruised kidney, and bladder, pelvis broken in three places, three broken ribs, collapsed lunch, and fluid aspiration.

She had been hit so hard that even a lay person could see on from the X-ray that her heart and lunch had been shoved significantly towards the center of her chest.

Then began her long battle against pneumonia. This was extremely dangerous as she lay unconscious in a coma and could not cough up the fluid. Our tiny but mighty 100 pound daughter clung to life against all odds.

As extensive as all these injuries were, none of them held a candle to the damage done to her brain. The neurosurgeon told us around day eight that there was nothing more he could do.

We sat in terror as the cranial pressure reached into the 80’s (5-10 is normal). There was a very real and fatal possibility of her brain hernia ting downwards into her throat. The wonderful SICU nurse wrung her hands helplessly as the warning lights flashed and the alarms went off. I opened the Bible and began reading aloud from Psalms. I know it kept me from going insane. But it also had another effect-her pressure began to fall!

I had only rediscovered my faith in God four months earlier, in August. By mid September our lives seemed to take a serious downward spiral. John, my husband was found with a large lung tumor. One month later a brain tumor was found. The cancer was diagnosed as Stage IV Melanoma - a very aggressive and usually fatal cancer.

Late November ’04 John had one lung removed. He had been home about 4 days when Kellcie nearly lost her life. We had turned to prayer for John as had many friends, but Kellcie’s accident turned things up a notch. I can now see how blessed we were to find out faith returning in August - just in time for the onslaught of our lives.

But I felt so “new” at becoming reacquainted with God. Would He care to listen to me? I had been ignoring Him for years. Churches put my family on their prayer list. Soon we were being prayed for from CA. to the East Coast to Hi, to Canada, England and Ireland. I became more confident that God heard our prayers.
We could see that if John had not had cancer in his brain we would have never have known about a fantastic neurosurgeon who God willing helped turn things around.

It was 20 days post accident before Kellcie was barely stable enough to travel the short distance to the MIR. The results were devastating – anoxia and extensive brain shearing.

We were reminded we could turn the ventilator off. Her prognosis held no hope. If she lived she would never wake up. If she woke up she would have no awareness of her surroundings, her self, or even know who we were. One doctor known for his perfectionism said even this was a “generous prognosis”. But he also said that studies showed that the power can work. Evidently there were just two rays of hope - time and prayer.

We struggled on with our hope for our daughter. Prayer and denial worked wonders! Someone told me that when something is broken you take it to the repair man. When the repair man can’t fix it, you go straight to the manufacturer. Well, we were definitely going to have to go straight to the manufacturer (God).

Early February John and I “accidentally” discovered Tiffany Snow. We had been living at the hospital since Kellcie’s accident. It was a rare morning for me to be home. I settled down in front of the TV with a cup of coffee. I tuned in to a local station. The segment was showing Tiffany facilitating a healing with a 19 year old girl who was expected to die! Was this speaking to me or what?! It seemed like divine intervention.

Tiffany came to see Kellcie a few days later in her coma. Kellcie was in sub-acute care and doing poorly. Her blood pressure was quite high and her heart rate was 150-200.

Tiffany was so gentle and loving. It felt as though she had been sent to lift our burden. As Tiffany prayed we all joined in and asked for divine intervention. Kellcie’s vitals all returned to normal and she fell asleep. But Tiffany’s words brought another gift. I had implored her to tell me if my baby was “in there.” She smiled knowingly and said, “yes your baby’s there.” she even giggled and said Kellcie was thinking of a certain young man. She gave the first initial of his name and she was correct!

This was the first time in over 2 months that John and I felt a lightening of our load.

Tiffany held Kellcie’s right arm and said very seriously, “there is an infection and she is on the wrong medicine.” Her words echoed in my being as Kellcie became quite ill later that night. She was moved back to the MICU where the Drs. were baffled at her symptoms.

I repeatedly asked if it could be the antibiotic. I was repeatedly told by the infectious disease Dr. that it would be extremely rare to have an allergy to Vancomycin. However, 10 days later he meekly suggested that we need to list Vancomycin as a drug allergy.

Always the skeptic, I was at once in awe and yet had to consider the possibility of it being a coincidence.

As our family was to learn with time and more visits form Tiffany, the word “coincidence” could not begin to explain what we were witnessing following the healings, as she awoke into consciousness and more abilities.

After the second healing Kellcie began moving her left arm, fingers, and left leg.

Following the third visit Kellcie began saying a couple of words.

One afternoon Tiffany called. She had been led in to prayer for Kellcie and wanted to know if she was speaking more. I felt badly, but honestly there had been little improvement. Within 2 hours Kellcie sat up and clearly asked “What happened?” this sent chills through all of us. This certainly showed an awareness of her self. And that something happened to her. More sentences followed and soon I could not even spell in front of her.

In April, Kellcie was seen by Tiffany again. We were not in a private room this time and visitors were there also. Two physical therapists were in and out as were nurses. It felt like Grand Central Station. I worried maybe God wouldn’t work in front of all these people. None of this fazed Tiffany as she tuned into God’s goodness. She began at the head and mentioned that “there was some fluid buildup there. Nothing to worry about but I should be watched.”

Well, I am not kidding when I say that within 10-15 minutes of Tiffany saying this, the Neurosurgeon came in, he scratched his head and he looked at Tiffany and then said “I will have to adjust Kellcie’s shunt, there is a little fluid built up there, don’t worry I will keep an eye on it.” This is how it has continued to be. Tiffany facilitates God’s healing energy and love. Within two hours to two days things will happen just as God has directed Tiffany to tell us.

In May, Kellcie was in rehab. That in itself was a miracle. She was a handful and very agitated. She could not tolerate anything touching her face, especially her mouth. In six months, she had no food or water by mouth and the therapist worked daily to help her through this aversion but there was no progress.
Kellcie had been there four weeks.

Tiffany had visited her the day before her discharge. She told us “Kellcie wanted to eat and drink but was fearful“. We should “try a blue or purple cup as those were her favorite colors”. We brought Kellcie home the next day. We offered her water out of a blue mug and she immediately drank and drank. The very next day she ate cheesecake.

In very short order, she was able to eat everything. Many people have severe swallowing problems after a severe brain injury. Most need salad or veggies put into a blender, and thickener put into water for less chance of aspiration. Kellcie was eating everything now, and still our tiny but mighty girl but a little over 100lbs.

Late June, Kellcie began in home therapy two times a week. During one visit Kellcie nearly broke a therapist’s nose. She mentioned that Kellcie was one of the most violent patients she had seen.

Well along came Tiffany again, she worked intensely and said, “expect changes with Kellcie’s legs.” A day later the PT returned for a session. She was very guarded as she began working with our daughter. After a bit she relaxed and told us that “we have a completely different person here today. She is so cooperative, her legs how much more strength and coordination and her balance has improved. I think she could eventually use a walker.”

Her neurosurgeon and physiatrist are so amazed with Kellcie’s progress. They too have found hope out of her miraculous recovery. I am praying they will offer other families some encouragement due to what they have seen.

Kellcie now smiles, jokes and sings at doctor visits. It does my heart good to see their smiles after such a long, dark journey. Kellcie doesn’t need splints, braces or Achilles tendon release surgeries as had been prescribed. There is talk she will walk without her walker one day, and she is practicing now, and doing well! (*7 weeks after this letter, Kellcie rarely uses a walker now, and is at PT twice a week and in swimming classes and looking forward to competition).

Tiffany knew all this from the first visit. She told us Kellcie would be fully healed, physically, emotionally and spiritually, that Kellcie would be a miracle testimony for God, encouraging many people and doctors.

Kellcie has remembered the SICU where she spent nearly six weeks. Keep in mind, her eyes were never opened during this time. Hmmm…

She has remembered the night of her accident and her destination. She can verbalize that her thinking doesn’t flow as it should and is very aware of her memory problems. All of this will heal I tell her. She is not “brain damaged”, she is in brain recovery!

We saw Tiffany in January. Again, like clockwork, two days later, here came the results. Kellcie stated out of the blue “I want to write.” She had only made straight lines and traced circles previously. She wrote on our grease board “Kellcie, CM (her initials) I love you.”

My husband who also sees Tiffany has survived four brain surgeries, one lung removal, one bowel resection and two series of intense brain radiation. We always see Tiffany before his checkups, which involve MRI’s, CAT scans and PET scans. She tells us that results before the tests and has always been right!

After John’s second brain surgery in August, the neurosurgeon seemed perplexed at how relaxed we were. He tried to drive home the point that John’s survival and recovery has been amazing. All the doctors look at us as we don’t understand the seriousness of his prognosis. We look at them in amusement that they are so stymied and don’t know what to do with him because he is not “by the book.”

It is ironic but I know that John’s cancer has played a part in saving Kellcie. It allowed us to know the neurosurgeon to call. I believe that because this doctor had met Kellcie previously and knew John to be amazingly resilient and also knew first hand the horror of the multiple tragedies, he didn’t have the heart to give up on her.

I also know that Kellcie’s injury has saved John. Her needing him has provided him with a very primal instinct to stay around and help his family. His will to live has been aided and supported by God through Tiffany.

I could go on and on. All the details don’t matter so much unless you are stubborn and skeptical as I was. God needed to keep hitting me over the head again and again before I got it. Our Father is real He listens and speaks to us all the time. Whether we think we are on speaking terms or not. His plan is always better than ours because He sees the big picture. We just need to relax in His love and know that He will give us the strength we need and the people we need to help us triumph.

Kellcie continues to make wonderful breakthroughs after healing from God. Tiffany says that Kellcie also has the gift of healing hands. Kellcie is quite impressed and excited. As poor as her short term memory is now, she does not forget her bright future helping people!

As analytical and skeptical as my nature is, I don’t use the word coincidence anymore. I smile and just tell God “thank you.”

My sincere hope is that those who need encouragement, comfort, faith or a place to turn to, will ask for and find Divine Intervention. Remember the “Manufacturer’s” number is unpublished but it is in everyone’s heart.

Freedom House Survivor Stories Part 2

PIA THOMPSON - by Beverly Thompson, Freedom House President

It has been ten years since the incident that caused my daughter to lose her short term memory.

It still feels like yesterday when I was called by a hospital and told she had been found face down on the beach, not breathing.

This came about after a night of having a great time in Tijuana drinking and dancing. She drove back home, picking up her wet suit and tanks to go diving. When she arrived at the beach, the life guard refused to let her go in the water. We can only believe that she went down the beach, passed out from the heat and alcohol in her system - a dangerous combination that impacted not only her life, but her whole family.

The doctors gave us little hope of recovering her memory. With help she does have her long term memories but cannot access them without that help. Short term remains in the moment. Pia can do most of her personal grooming and other activities but must be supervised. Due to this condition, it is hard to place her in any facility other than a nursing home where there is supervision. For now, she lives with me, she is secure and happy and seems to have no desire to wander out on her own. But the family must plan most activities around her disability, and this does cause conflicts between members. The biggest problem for a family is the resentment and the guilt. The resentment comes because this person has laid great burden on their independent lives, and the guilt is the individual’s for feeling that way. Every family lives with these two overriding emotions, and they never go away.

Laughter is important - you can’t always cry. To survive, you must find some balance. You try to live in the moment, not thinking of what-ifs or what could have been. She has become more independent, more helpful when asked to do odd jobs around the house. We still have times when she has insight and can talk about her past, but it’s very transient. She needs supervision for some things as she loses her train of thought and will half finish work. Generally she is cooperative, but occasionally the other side rears itself and she will say “I don’t want to” to everything. Most of the time, however, she wants to help with whatever we are doing. I find a Diet Pepsi works wonders when she doesn’t want to do something.

Mine is a whole different story.

Before her accident, I was a wife, woman, and psychologist with a career looking toward retirement. My life took a turn that I could not change. The unexpected can be very frightening; not knowing how my daughter would be once out of the coma, doctors telling me there was little they could do, when I just wanted some hope. I could not take her home when she was discharged as I had a full time job. A friend volunteered to take her, but Pia’s mental and physical problems were more then she could deal with. I took her home where my husband could watch her during the day. I was able to continue working for the next year. My husband was not well during this time. To make matters worse, he then had an accident from which he did not survive. I now had to find help for Pia and continue to work. These were difficult times complicated by her lack of memory and wandering when left unsupervised. I finally found another job in a Health Day Care where she could go to work with me, it was a secured program: no leaving allowed! I retired after three years working in the new program and now Pia is living with me full time. I continue to work with her on memory and personal skills.

Taking care of anyone with physical and mental problems is a daunting task when you look at “your” future, especially, looking down the road of aging and your own personal health problems. None of us would have chosen this path for ourselves, and cannot perceive a family member taking on the challenge when we are no longer able. I have felt all the frustration and anger at this person who has left me with such an indomitable task. It has put the rest of my life on hold, and to be honest, I do resent it. But I am a mother first and a care giver second, so I bottle up my feelings and deal with it.

I know that all of us who have or are living with a brain injured individual know what we as a group face every day. I had decided it was time to do something about our plight, so my friend Donna and I decided to form a non-profit organization “Freedom House.” We are working very hard to find a permanent solution by opening homes for these individuals, and for our peace of mind. It will take time, but it will happen.

Freedom House Survivor Stories Part 1

JAMES KEVIN LEWIS

Life after Brain Injury from a Mother’s perspective - By Donna Lewis

It was Sunday April 7, 2002; I was hosting a Bible study at my home for about 12 people. James was getting ready to leave to meet some of his friends for the evening. He greeted everyone there, pleasant as always, gave me a hug and kiss and off he went; I had no idea that would be the last time I would see James as he was then.

When James failed to come home I tried reaching him on his cell phone. Two days went by but he had not returned any of my calls. I began calling his brother and some of his friends to see if they had seen him or knew where he might be. Then began leaving messages on his cell phone that were not so kind asking him why he wouldn’t at least get back to me so I would stop worrying. During those two days I had to work. At the end of the second day I was too tired to listen to my voice messages. I prepared something to eat, sat down and tried to relax for a while. Prior to going to bed around 11:00 p.m., I remembered I had not yet checked the messages.
That was when I first heard the message from a social worker saying; if you have a son whose name was James Lewis born on September 23, 1974 would you please contact UCSD Medical Center Trauma Ward in (Hillcrest) San Diego immediately. Upon calling, I learned that James had been in a near fatal car accident, and they had been trying to reach his next of kin because of the seriousness of his injuries. He had arrived at the hospital by ambulance around 2:30 a.m. on Wednesday, April 10, 2002. James was not carrying emergency contact information so they did not know how to get in touch with his family. Thankfully, one of the young men who was in the truck with James at the time of the accident remembered our home phone number and was able to give it to the attendant at the hospital.
After contacting the hospital, they assured me there was nothing I could do that night. They said James was in critical but stable condition. I felt from what they were telling me that he would be okay through the night. I called my eldest son John to let him know what had happened. I asked if he would go with me the next day to visit James. I sent out an urgent email to our family, friends and church family asking everyone to begin praying for James, this list consisted of about 40 people in the beginning but grew to over 250 prayer partners that we still email updates to today. I began praying too but as you can imagine sleep was not something that came easily that evening and thereafter.
I contacted the hospital first thing the next morning and learned that James had been driving under the influence of alcohol and marijuana and even though his alcohol level was very low, since he had two friends in the truck with him it was considered not just a “DUI” but a “felony DUI”. Since it was a felony we were told we had to contact the San Diego Sheriff’s Department to gain permission to visit James. He had been placed under house arrest and had a guard assigned to his bedside 24 hours a day.
James had been traveling at a speed of approximately 70 miles per hour on Interstate 8 East-bound towards the 15 North-bound and had fallen asleep at the wheel. I was told by the detective that at that speed crashing into a tree or anything stationary is was like hitting a brick wall and the speed would be calculated, at the time of impact, double the speed in which he was traveling, which meant he hit the tree at 140 mph.
John and I went downtown San Diego to the main Sheriffs station to obtain permission to visit James, we were told that because of the offense only 2 people would be allowed to visit at a time, once per day and that our time would be monitored for 45 minutes each visit. Additionally, we would only be able to see him two days per week and once on the weekend. This was normal for prison visiting hours yet this made us feel as if we were the ones in confinement.
We were not sure what condition we would find James in when we arrived at the hospital. I remember having to be buzzed into the trauma ward. The nursing staff, doctors, and social workers began gathering around to prepare us for what to expect before seeing James. It was a very busy emergency ward. James’ room was very dark, no lights other then night lighting, and lights from the many instruments and machines.
The noises coming from them, with beeps, buzzing and blips, were a little overwhelming in the beginning. James had tubes in his mouth for breathing, tubes down his nose for feeding; he was being given nutrition, antibiotics, pain relievers, water, and everything you can think of to keep him alive. There was a nurse stationed at his side monitoring his condition every moment of the day. The nurse’s shifts were 12 hours each so they would rotate only 2 times per day.

Our first sight of him revealed his head completely wrapped in bandages, it was swollen to three times its normal size, about the size of a basketball. He was a reddish, purplish blue color and the swelling was throughout his body. I was told his condition was critical. They did not know if he would make it through the next night. He had fractured his pelvic bone in three places. Other then the swelling, and discoloration of his skin, his physical appearance was better then I had expected. He only had one area on his left upper forearm where there was “road rash” caused from glass from the truck window which had shattered upon impact, the glass had been removed from his arm. What was going on internally was a completely different story.

We were told he was in a drug induced coma to help him tolerate the pain; therefore he would not be aware of our presence. I am sure you have heard that the last thing to go is the hearing and I remember leaning over the bed to talk to him to let him know we were there and that we loved him and to hang on. I told him repeatedly not to give up that God was in control. Then when I leaned in to give him a kiss on the cheek and touch his arm the guard immediately asked me to move away from the bed that I was not allowed to touch him or have any physical contact. He had been placed under house arrest because of the felony and house rules were absolutely no physical contact. I told the guard that if he thought I was “not” going to touch and comfort my son during what might very well be his last days he would have to arrest me as well. Talking and touching are two very important ways of helping your loved ones in the healing/recovery process and no one was going to take that away from me.

James was shackled to the hospital bed at the right ankle. They told us this was routine with the felony offense. I guess they feared he might walk away while under the medically induced coma and a pelvic that was fractured in three places.

James was hooked up to every type of machine possible, from monitors that measured his level of pain, heart beat, blood pressure, breathing, oxygen levels, and the draining of excess cranial fluids on the brain. He had a morphine drip so when his pain became too intense it would automatically begin entering through one of the tubes. The doctor had to drill holes in James’ skull twice (the first one was not in the right area) and placed a shunt in the hole to drain the cerebrospinal fluids and an enormous amount of blood from the hemorrhage on his brain. His brain had swelled so badly that they were trying to help relieve some of the pressure hoping to prevent further brain injury.

The next day I spoke again to the captain at the sheriffs department and was able, after much pleading, to arrange daily visitation any time of the day, and for up to two hours at a time. At this point since our visits were still so precious, I only allowed family, our Pastors, prayer partners and a couple of his closet friends to visit. The visits from his friends were monitored and could only happen if they contacted me or my eldest son John first. I did not want our family time with James to be used up by curiosity seekers. This was our time to pray for healing or say good-bye if need be. Even though we were all praying for the best for James we were also preparing ourselves for the worst. We knew God had control over the situation but we did not
know His plans.

Over the course of the next couple of days the doctors were trying to decide how and if they could perform surgery on his pelvic to fuse the bones back together. There was a gap in one area that was about ½ inch in width. They began preparing to do surgery when James took a turn for the worse, all the bells and whistles began going off in his room; they immediately removed me from the room and I could see the look on the nurse’s face. She was losing him. I immediately made a few phone calls and asked for immediate intense prayer. Once he had returned to a stable condition they decided the best thing to do was place him in traction so the pelvic bones would have a chance to heal properly rather then take a chance on surgery.
James was now not only attached to every machine possible he now had a ½ inch bolt screwed through his left knee area and his leg was held up in the air at a particular angle and level for proper healing to the pelvic.

You might be thinking what could possibly happen next? In order to keep James’ vital organs from shutting down which they were beginning to do and to keep him from getting serious bed sores from lying in one position they had to do something about his movement. They ended up placing him in a bed that rotated back and forth at a speed conducive to the injuries, but in order to do this James would have to be strapped down completely to the bed. Now in addition to all the tubes and wires he now had two clamps on his head with a strap going across his forehead to steady it and keep it from moving back and forth from the motion of the bed. Straps were attached to both legs and arms, torso, and stomach area on his body to keep him from moving too far from one side to the other or from falling out of the bed. They discovered they could not rotate the bed too far to the right or James’s vital signs would begin to show that he was experiencing an enormous amount of pain which caused all the machines to begin flashing, buzzing, and ringing. They had to adjust it so it would rotate only to the left and then come back to where he would be lying flat again so this rotation went on for several weeks.

After the seventh day I called the detective who was now handling the felony DUI case and told him about the condition James was in and that James had been shackled to the bed since he entered the hospital and that there was still a guard 24 hours a day. I asked if there was anyway this could be changed so that his family and friends could come and say their last good-byes should this become necessary. The Detective was alarmed at this and turned out to be the nicest and most compassionate detective, he could not understand why James was guarded and shackled with the condition he was in and immediately ordered them both to be removed. This now allowed us to visit any time of the day, every day, and for as long as we wanted. Praise the Lord!

James’ confinement in the Trauma ward lasted about 5 weeks before he began to improve slightly. One by one the life support systems and machines were being disconnected. The swelling of his head and brain had reduced, the shunt was removed from his head, the rotation bed was stopped, and the traction and restraints had been removed. They placed a tracheotomy in his neck for breathing and a PEG tube was inserted into his stomach for liquid food consumption that he received round the clock. The doctors told us that James’ brain had been severely injured known as TBI or traumatic brain injury. This was caused from a serious jarring or impact to the head subsequently causing the swelling; they said he would be a vegetable
for the rest of his life. [Oh yea of little faith]

He was moved from the trauma ward and transferred to an intensive care unit, where he would continue to be monitored 24 hours a day. He would stay there until a suitable long term facility could be located for him to be transferred to.

James’ eyes were open which is normal for this condition but his bright blue eyes were dull, no shine, no life, and this is what we were told to expect of him, forever. He could not even follow you with his eyes around the room. He did have his hearing from what we could tell and if you moved to another area of the room he would try to follow the sound of your voice but he was very slow in responding.

It didn’t matter what I was hearing from the doctors and nursing staff I never believed James would be a vegetable, God never revealed to me that he would not heal James. Christ promises healing and I knew in my heart no matter how long it would take that God would heal James for His Glory.

Thinking back I believe that part of the time I was numb. I knew I would have to be James’ eyes and ears if I were to keep him alive and give him every possible chance for survival. I found that I would have to speak out for him in every circumstance since he could not do it for himself.

James did not know who he was, where he was, or what had happened, he didn’t have a clue who I was or anyone else who came to see him. He had no idea who came in and out each day and would just stare at you with this blank look and you could tell he was trying to figure out who you were. He never smiled and that wonderful contagious laugh he had may never be heard again. It was frightening to see someone you loved, that you had given birth to 27 years earlier, with absolutely no awareness of whom he was, let alone who you were. Every time I came into the room I had to reintroduce myself even if I left for just a minute, this was all part of his memory loss. He would only be able to remember things for a second then we would start all over again.
The loss of long term memory meant all his growing up years were gone, remembrances of any of his family, gone. It can be described easier if you think of having amnesia. The brain injury had affected the Temporal Lobe and Frontal Lobes. The Frontal Lobe controls planning, problem solving, initiative, judgment, self-awareness, organization, attention and personality. The Temporal Lobe controls a person’s memory, language, organization, and hearing. James’ motor skills, balance, and coordination were also affected from the injury.

This meant James would be in therapy for a very long time, we now needed to learn how to teach the other side of the brain to do the things we take for granted, like reading, writing, talking, eating, walking and even breathing. He would be learning how to do all these things all over again. One thing I’ve learned in all the reading about brain injuries is that this condition is not called brain damage, but a brain injury. In short it means that a part of the brain that has been “injured” may not function in the same manner as it did before the injury.

Everything James was used to doing in his everyday life would require retraining to another part of the brain. You hear all your life that we only use 10% percent of our brain in our life time so we had 90% percent to work.

James began receiving physical therapy in about the 5th week on his legs, arms, hands, and feet to keep the muscles from contracting more then they already were, so he would not return to a fetal position. The physical therapists at the hospital were scheduled 2 times per day 3-4 times per week but the family (me) was expected to do it on the other days.

On May 31, 2002 about 7 weeks after his accident, James was moved to a facility that dealt with patients who required 24 hour care. The Sharp Coronado Sub-Acute Hospital took patients who could not function on their own and required being fed through tubes and patients who could not breathe without assistance.

At that moment our lives began to change even more. We had made it through what I thought was the worst part and James had survived! But what had he survived? It was now up to God to decide the extent of James’ healing and where He would take us from here. Our family had become divided over these past few weeks even though most everyone showed support verbally to me, some thought I should pull the plug on James. It was a very difficult time for everyone. This tragedy was too close to home for many and they did not want to see James in that condition or accept the fact that something as tragic as this could happen to our family, so they dealt with it in their own way, some by not coming around, others would come but it was very hard for them to see James in that way.

I found myself in a whole new world of care and support and even neglected my own life to become a staple in James’ and the lives of my oldest son and his family. I was determined that I would stick with him no matter how long it took for his recovery. I felt this is where God had intended for me to be. Even though many doctors, pastors, family members and friends thought that I was giving too much towards James’ recovery, God had not told me to stop. I never felt that God was giving up on James so how could I? God promises healing in the Bible and I lived by those words. I didn’t just believe it I knew He would heal James!

Over the next several months I visited James every day after work and on Saturday and Sunday. I would eat dinner or lunch at the hospital spend 2-5 hours with him, reading short stores, or from the Bible, and bible verses people had sent that they claimed for his healing. I read stories from people who shared their stories with me of similar circumstances giving me encouragement and being told never to give up. I talked to him constantly, telling him every day what the date was, that I was his Mom, who he was and why he was in the hospital. Months went by but I never got tired of being there for him. I had constant battles with the doctors and nursing staff over his care, therapy and recovery during this time and it was physically and mentally challenging.

I mentioned earlier that I became James’ eyes and ears and his spokesperson. The hospital had allowed his legs to contract because they continually told me he would not recover. They suggested tendon release surgery which meant he would not have the use of his legs when he did recover. I fought for daily physical therapy for James and it was a constant up hill battle since the doctor continued to tell me over and over again James would be in a vegetative state for the rest of his life. I rejected those words over and over again to the doctor and staff at every mention of it.

On some days when I visited James I would find James lying in wet messy clothes and bed sheets because the shift going off duty would leave the mess for the oncoming shift. Some of the Certified Nursing Assistants (CNA’S) would find ways to aggravate the patients if you complained about their care. I started making formal written complaints to show them I meant business. On one occasion I found James had scooted in his bed, and somehow stuck his head out through the guard rails and no one could tell me how he had gotten that way or for how long he had been in that position. Never leave your loved ones care to the facility and never feel you cannot say something about the care your loved one is receiving. Twenty-four hour care does not mean some one is with them 24 hours.

I gave the medical staff information that I had accumulated from reading and studying about treatments and regarding the do’s and don’ts of brain injury. Much of this information came from the Ranchos Los Amigos National Rehabilitation Center for Brain Injury in Downey, CA. I wanted the staff to know what to expect, what the symptoms were, and different degrees, or levels, of cognitive and behavioral functioning before James went through this, so they could be prepared. It seemed I knew more then they did because I studied and read up on everything I could get my hands on. The doctors and staff would not allow the information to be distributed. Even though the staff claimed to have experience with brain injured patients I found they only had experience with those who remained in comas and received little or no attention from
staff members; or patients who were not receiving stimulation, love, or touching of any kind from a family member. Also, those who did not have a loved one near to support them were not being cared for properly, they were kept on medication that would keep them quiet and sleeping.

I had to fight to have James taken off the morphine he had been receiving from UCSD months after his transfer to Sharp Coronado. He was still receiving daily doses even though there was no indication that he needed it. I had to fight to get them to have a dentist come in to take proper care of his teeth since they had him on a medication for seizures that ruins the teeth and gums. Again the doctor refused to take him off this medication even though he had never had a seizure. He contracted an infection in his tracheotomy and his throat was so swollen it was cutting off his breathing and no one noticed it during their shift. When I arrived that particular evening and brought it to their attention the fever was already registering 103.5 degrees, by the end of the night it was registering 105.2 all I could do was pray.

When James was able to view television occasionally I had to fight to get an optometrist to check his eyes. James had worn glasses and/or contacts for several years and could not see without this assistance. I also had to fight with the staff to be sure the program was not MTV or Spanish stations. I wanted something soothing or nothing at all. Working with Medi-Cal and the nursing staff sometimes became unbearable; you had to learn which of the battles were more important to fight harder for.

Everything over the next eleven months was a battle. I always believed, and never lost faith, that James would be restored to having a healthy life because I believed and still believe in the healing power of God.

I had placed a journal in his room so that when people were able to visit they could write something to him.
Then when I arrived each evening I would read to James who had visited that day and what they had written. This was part of helping him to remember who these people were and hopefully help him to restore some of his past. I also left disposable cameras in the room so pictures could be taken with him and his friends. I made an album for him so he would be able to see the picture and who I was referring to.
Then one day about seven months at this facility I was standing over his bed reading from his journal, when all of a sudden he reached up with his hand and turned the journal towards him so he could see it. This was the first sign of acknowledgement, of any kind, from him since his accident. The doctors who believed only in science never showed any hope of his recovery even after this happened. We reported earlier symptoms of similar signs of waking up, but they told me that it was just a spontaneous response.

He was beginning to wake up, but now I had to convince the doctors of that, note they were not telling ME that he was waking up I was telling them. I began placing the journal in James’ lap, propped up on a pillow up against his legs in front of him so he could see it. He began turning the pages on his own and looking at each page for what seemed to be a very long time. I am sure he was trying to focus and read. I would read to him as he turned the pages and then show him the picture of the person who wrote it. James was still not able to speak or communicate with us in any way and he showed no emotion.
I reported these incidents immediately to the nursing staff and had some of them come in to view this marvelous awakening. The staff was all very excited for James but the doctor continued to tell me it was only a reactive response.

I tried to get him to nod his head for yes, or for no, when a question was asked but he did not respond, he just stared at you. I used children’s books to read to him and teach him to recognize the words. He was unable to speak since he had the trach still in his throat so I started teaching him sign language. This seemed to work and was fun for both of us and he was finally able to communicate a little to me. Of course everyday we had to go over what he had learned the day before, and we would try a new word or sentence each day.
The speech therapist began to see if James could swallow and tolerate soft foods. They began slowly giving him swallow tests to see if he could sip fluids through a straw. He was finally able to begin drinking thickened drinks, they were deeply concerned that he might aspirate with taking in fluids. They decided to begin testing James for voice by attaching a Pussy Muir valve to his trach. They did not know if his vocal cords would still function. After a couple of months the therapist found this was working so it was time for him to request that the doctor remove the trach that James now had in for a year. He had several swallow tests and after several weeks he was actually able to make audible sounds. He even began to say yes and no and Hi Mom. Do you know how wonderful it is to hear your child say “Hi Mom” after not having a voice for over a year? Praise is to God!

We were on the road to a very long recovery process and I had no idea what was ahead of us, not that it mattered I would have been there no matter what. In December of 2002 he had been reevaluated and we were told that the social worker would begin the paperwork for James to be moved into a rehab center.
Between paperwork and doctor evaluations this process took about 2 months, during this time the trach and the feeding tube had been removed and in March of 2003 James was accepted at Sharp Memorial Rehabilitation Center in San Diego.

The next five months brought intense physical therapy. Because his legs had contracted he would be placed in leg braces to be worn all night, he would be stretched, and pulled, and pushed. He had to learn balance, sitting, standing, and walking. Of course none of this came easy since he had forgotten how to do all of this and it would be months before he would be able to do any of it on his own. He was taught how to maneuver a wheel chair which was now his mode of transportation.

Speech Therapy was similar in that he needed to learn how to speak, read, write, solve math problems, etc. His speech needed to be clear and he had to practice pronouncing each and every syllable. His speech therapist tried something new with James that she had never tried with anyone before. In order to get him to communicate with others she set him up across from the nurse’s station with a table and items of candy, licorice sticks, cookies that she would supply. He was then supposed to sell these items to anyone who passed by. He became very good at this and she let him keep his profits. It got to the point people were bringing in home made items and letting him sell those as well. He began to communicate with others and this process actually helped his memory and his ability to add and subtract to give the right change to the customer.

In Occupational therapy he would learn to dress himself including putting on socks, and shoes, pulling shirts over his head and pulling up his pants all on a bed or chair. He would learn to use utensils to feed himself, hold a tooth brush and brush his teeth, comb his hair, and take a shower, all the things we do every day without a second thought. We had transfer boards that we would use to get him from bed to chair or car.
We now buy tennis shoes that have Velcro closures in order to help him with this process. You begin adapting to his disabilities. This process is very hard for a parent to watch because you want to help him but can’t because you know he has to do it himself.
James was released from Sharp Memorial to in-home care on July 4th, 2003, he calls this his
Independence Day and that it was!

Now it would start all over again at home, we had to set up in home nurse visits; physical, occupational, and speech therapists to come to the house for the next several weeks. I had to hire a care giver who could be with James from 7:30 a.m. to 5:30 p.m. so I could maintain my job. The first four months we had three different care givers, two of them were trained nurses, and one was a certified nurse’s assistant but none could handle the situation at hand.

We finally found one that was willing and able to work with James who had absolutely no credentials and was use to being around someone with a brain injury. Her father had been injured 17 years before and suffered from a brain injury so she knew what to expect.
We worked out a schedule where James would eventually attend an ABI (Acquired Brain Injury) school Monday through Thursday from 9:00a to 12:00 noon. From there he would go to out-patient rehab at Sharp on Monday and Wednesdays where he received Speech, Physical, and Occupational therapy from 1:00 until 4:00p. On Tuesday and Thursday he received additional physical therapy at The Challenge Center between 2:00-3:00 p.m. On Fridays James attends an adult day care center where he also receives physical and occupational therapy. There he gets to play board games, watch movies, and do arts and crafts with other adult patients. During the summer months he attends a swim class where he is learning balance, swimming under water, and floating on his back. He loves the swim class he feels a lot of freedom to be able to walk around the pool on his own. We still maintain most of this schedule today, 6 years after the accident.

James is walking with a walker now and is beginning to walk around the house without any apparatus. He has walked up to 200 steps even on grass and up slight inclines with crutches, he is able to walk between two people holding their hands and walking along with them for short periods of time. He walks into church, restaurants, school, and doctor appoints all with his walker and without the use of his wheel chair. His favorite thing to do is ride around the markets in the mobile carts when we do our grocery shopping.
James is learning independent living skills some of these are doing his own grocery shopping and writing his own checks to pay his bills, quite an accomplishment since we were told he would never recover from the vegetative state…

Update: we are now celebrating our 6th year of recovery, James is using a 4 wheel walker, and he continues to attend the ABI School and Speech Therapy at SDSU. His communication skills have increased immensely and his ability to get around on his own improves daily. He walks around our home without the use of a walker but as we call it he is wall-walking.

James has great goals and dreams ahead of him which include, having a girlfriend, working, purchasing a car and driving again. He longs to be able to drive to the beach with friends and surf, watch the sunset, put his feet in the sand.

Some of these dreams may never come to fruition but it will not be me who discourages him from trying to accomplish each and every goal he has set for himself. James has never given up on his healing which is why he continues to make progress from his brain injury and make advancements in everyaspect of his journey to recovery.

Freedom House Board Members

Nicole Andreatta-Bell, Psy.D.

Nicole is the Regional Program Director for Learning Services in Southern California and oversees all clinical services. Nicole’s work with brain injury survivors stretches back more than fifteen years. In more recent history Nicole has been conducting research to learn more about the unique experiences and needs of family members of individuals with TBI in the hope of better serving this population, both as a marriage and family therapist and a political advocate. Moreover, Nicole is interested in the potential of family therapy practices to help families envision preferred futures, shift their relationship to longstanding problems and build communities of support for the enactment of new lives after head injury. Nicole’s inquiry continues with how therapeutic dialogue with family members might strengthen the family’s voice as self-advocates for more comprehensive services. After recently completing a doctorate in psychology, Nicole hopes to improve the level of support and long-term services that are available to persons with TBI and their families. Joining with Freedom House allied perfectly with these hopes!

Cindy Ramage

Cindy is a native or San Diego who has enjoyed an amazing list of careers. To name a few, she is a licensed hairstylist, certified interior designer, certified paralegal and licensed real estate agent. It was during her most recent career in real estate for the last eight years working as a real estate agent that she met and became close friends with Donna. She knew and prayed for Donna’s son James when he had his accident. A few years later, Cindy’s father had a stroke and a few years after that he was diagnosed with Alzheimers. Donna was instrumental in helping Cindy cope with the difficult times of watching her Father deteriorate until his passing in September of 2008. It was also during the later when Donna started Freedom House that Cindy became involved as a board member. It is her hope to help people with brain injuries through this instrumental organization.

More Board Members

William W Mowbray

Mr. Mowbray joined the Board of FREEDOM HOUSE in March, 2007. In addition to being a Board member, he functions as its Chief Financial Officer. He is the President and Chief Executive Officer of The Mowbray Group, Inc., a national management consulting firm which specializes in corporate cost containment strategies. He was a senior executive with Factory 2-U Stores, serving as Chief Executive Officer from 1995 – 1997 and as Chief Financial Officer from 1991 – 1995.

Previously, he held senior executive positions with several retail companies including Casfam, Inc., Clothestime, Inc., Marshalls, Inc., Lucky Stores, Inc. and others. In all he spent over 35 years in the retail industry.

He attended Northern Arizona University where he studied finance and economics.


Barbara Macnamara

Barbara is the mother of a 22 year old daughter Kellcie who is a survivor of a traumatic brain injury. Barbara has also had to deal with the recent death of her husband; through this with him having a surgery to have one lung removed due to a massive amount of tumors and additionally having a brain tumor; John underwent 7 brain surgeries in all not counting the numerous other surgeries.

During this time both her husband John and her eldest daughter Kellcie were in two different hospitals and she was given news that her home in Descanso had blown up and there was absolutely nothing left. She determined that there was nothing she could do about it at the time and went on to fight for the lives of her husband and daughter. John is survived by Barbara and his two daughters Kellcie and Page.

In addition Barbara and Kellcie both suffer from Rheumatoid Arthritis. Page is struggling with her own difficulties where at one time she had to drop out of school to help Barbara with the medical issues surrounding them at home. Page has since graduated from high school but is still care-giver to her sister Kellcie. For Barbara this was a journey for her to again ask God back into her life.

Freedom House President Beverly D. Thompson

Beverly is a co-founder and President of Freedom House. She has an extensive career in counseling and health care. She has a Masters Degree in Marriage and Family Counseling and for the past fifteen years, has been involved with counseling individuals and families and supervising programs for the mentally disabled.

She currently supervises a staff of five at an adult health care program with over two hundred participants.

Beverly has extensive experience related to Traumatic Brain Injury.

Ten years ago her daughter suffered an accident while at the beach and went into respiratory arrest which left her with severe brain damage. Her physical appearance is such that one would not think there is anything wrong with her. However, when you try to carry on a conversation with her, she is unable to retrieve old information or remember a recent conversation. If you ask her a question concerning her past, she is able to retrieve the information. She cannot be left alone as she will leave wherever she is in search of her mother or anything familiar from her past.

For three years Beverly looked for a permanent facility to place her daughter in. She visited or contacted most of the facilities in San Diego but found they were either “private pay” which she cannot afford or had no other funding source. The only place she found that would take her was a skilled nursing facility in Santa Cruz, CA where she lived for two years, until she moved back home.

Knowing there were no homes for the ABI (Acquired Brain Injury) population, she wrote an article about her experience and with the outpouring of response, decided she must do something to change this for herself and all of those in the same position. When Donna Lewis read the article she called Beverly and they soon realized they were both looking for the same solution. After several meetings they decided to form a nonprofit entity and FREEDOM HOUSE was born.

Meet the Freedom House Board of Directors

Members of the Freedom House Board of Directors serve on a voluntary basis. Directors are elected by their peers to serve for a term of three years. We'll be introducing our Board for the following week.

Donna L Lewis

Donna Lewis is a co-founder of Freedom House. She currently holds the position of Chief Executive Officer for the organization. She has an extensive background in business, business law, and business management through her 25 years of retail and real estate experience.
Donna is a board member for the San Diego Brain Injury Foundation and currently holds the position of Secretary. Through her association with this organization, Donna has met numerous people with family members who suffer from a traumatic brain injury. They share the same interests in trying to find the means to provide group homes for people with brain injuries who have the desire to live independently.

Beverly Thompson was one of those parents. Beverly wrote an article for the foundation newsletter that described, basically, the same interests she had for her daughter, Pia, as Donna had for her son, James. Donna contacted Beverly after reading the article and they formed a partnership with the objective of establishing Freedom House.

Donna is the mother of a 34 year old son, James, who suffers from Traumatic Brain Injury (TBI).

ABOUT FREEDOM HOUSE

Freedom House started as a dream between two mothers regarding their adult children who both suffer from traumatic brain injuries. Both were looking for a safe and secure place for their children to live independently. They found the possibilities were scarce and far too expensive, so they met and began putting a plan together. They wanted an affordable home that would accommodate people who could live independently but safely.

Freedom House will be a group home specifically for people who have acquired brain injuries. It will be a place of security -- a home where the residents can return to at the end of the day. From here, residents can go to work, to the doctor or therapy appointments, attend school or just shop.

People living at Freedom House will build a new extended family -- meeting and making new friends who have also acquired brain injuries through auto accidents, strokes, anoxia, aneurisms or military injuries.

In addition to providing a place to live, Freedom House will also make outside activities available to residents. There will be access to public transportation to get them where they need to go within the community. Plans for Freedom House include full-time staff members, on duty around the clock to provide meals; manage medications and supervise household activities. There will be security doors for peace of mind but people can check in and out when they want to leave the premises.

We are soliciting donations to finance our first Freedom House which we plan to open in 2010.

Both military and civilians with traumatic brain injuries will be welcome. And if you want to help them fulfill their dreams of becoming the independent people they strive to be every day, we’d welcome your support!

Thank you for your interest in Freedom House.

From the Board of Directors

WELCOME TO THE FREEDOM HOUSE BLOG

Wouldn't it be great if there were a place where persons who have survived a Traumatic Brain Injury (TBI) could get a piece of their lives back? And don't you think it would be good if this was a safe and nurturing environment?

That's what Freedom House is trying to accomplish. Thanks for stopping by our blog. Please feel free to look around our website: www.FreedomHouseABI.org. We're located in sunny San Diego, and we're off to a great start.

By visiting our site, you will learn who we are, what we're up to, what we've
already done and more. You can also find out how you can get involved and support us with a much appreciated donation or personally becoming involved in a great organization.

Thank you for your support ... we look forward to hearing from you again soon.

The FREEDOM HOUSE Board of Directors