It has been almost ten years since traumatic brain injury (TBI) crashed into our lives, changing our family forever. People always ask, “How is your son Paul doing now? How are you, your husband, the other kids? How has your family survived?” I usually give my polite, standard answer: “Oh…thanks for asking, we’re all doing fine. And you?” But the reality is — unless you have experienced the loss, the heartache, and the ripple effects that brain injury can inflict — you cannot possibly understand the magnitude and the seriousness of the life-altering implications. The long-term impact that TBI imposes on the injured person, family members, and friends is unthinkable. The nightmare of TBI relives itself day after day, month after month, and year after year. Grief and sadness persist even ten years later, despite all the miraculous gains my son has made since his initial injury.
After the shock of Paul’s accident and TBI diagnosis ― when I understood the reality and severity of his injuries, knowing that they were likely to include lingering deficits and handicaps ― I wanted to bury my head under a pillow and slip under a thick blanket of denial. But to survive, I realized the necessity of being strong-willed and maintaining an attitude of never giving up. Everyone — myself and my family as well as the doctors, nurses, therapists, and even Paul himself —would have to draw on inner resources we had not known existed.
In the early stages of Paul’s injury, he was immobile and essentially in a vegetative state. We suddenly had to become his eyes, his ears, his voice. We needed to advocate for his every need. My husband and I fought to find the best medical, financial, educational, legal, vocational, and rehabilitation services available. We never stopped advocating for our son’s needs or for those of our family. As days turned into months, and months turned into years, I do not know where our energy or drive came from to venture into areas we knew nothing about. But there was no way we would stand idle without trying to help our son possibly regain even some of what he had lost after being struck by a car while riding his bike at age 13.
We came to realize that the outcome of each TBI, like each person, is unique. A person’s outcome depends on the specific circumstances and severity of the injury, immediate and long-term medical care, rehabilitation services, and the individual patient and family. We also learned that many people with TBI plateau relatively soon after their injury, without making huge gains. Sometimes these injured people and their families are left to cope with so much beyond their control: cognitive, memory, behavioral, physical, emotional, and social changes … the medical bills and never-ending insurance claims … the everyday demands of cooking, laundry, cleaning, yard work, going to the office, maintaining a marriage, and keeping other children’s studies and activities moving forward.
Rehabilitation: After many months in ICU, our son was stabilized, but the urgency continued. Getting him into a rehabilitation hospital was key to learning how to speak, to walk, and to perform basic tasks again. We knew Paul’s recovery was questionable and that he could possibly remain bedridden, wheelchair-bound, or cognitively impaired. But the months of grueling shifts of speech, occupational, and physical therapies began to pay off. Paul fought back like a champion! We began to see small gains — he blinked his eyelids, lifted a finger, uttered a word. Seeing the healing begin was powerful and moving. Yet Paul still had a long way to go.
Reintegrating Home: Anticipating Paul’s release from the rehabilitation hospital, we were faced with a new set of questions. What would we do next? Paul was still using a wheelchair and a walker. He was still struggling with memory and speech loss. He still needed assistance with everyday activities and self-care. I worried about how we were going to cope. When my husband or I were home, we’d tried to focus on the needs and cares of our other children, while managing the daily chores that made the household run smoothly. When we’d been at the rehab hospital, our only focus had been to take care of Paul. I was not sure how, or if, it would even be possible, to mesh these two demanding worlds into one.
I knew our family would be under more stress and would have to surpass the extraordinary level of support and help we were already extending to each another. We had to think about all aspects of home nursing and medical care, to obtain and install all assistive and adaptive equipment, and to prepare Paul’s siblings for the homecoming of their “new” brother. We suggested ways for the other kids to help, and we gave them permission to back off if need be. The caregiving was both never ending and exhausting. We had to recognize our own limitations, shed any guilt, and ask for help from our community, friends, and family.
Outpatient Therapy: Continuingoutpatient therapies was important to help Paul regain more movement and thinking capabilities. We logged many miles driving to and from his new outpatient facility, 20 minutes from home. I was shocked at how many injured or maimed people came and went every half hour. Missing legs and arms could have been one of the criteria for entry. And the therapies went on and on and on….
Reintegrating Back to School: We tried relentlessly to set up home tutoring through our town’s special education department to get Paul the mental stimulation he needed to continue recovery. But after investigating special needs schools and other facilities, we made the hard choice to try to reintegrate Paul into the public school system. We recognized the challenge because specific educational processes and styles used in teaching TBI students are very different from those used in teaching individuals who have permanent birth defects. Paul needed an Individual Educational Plan (IEP) geared toward his specific needs. He underwent a neurophysiology examination, which is concerned with the relationships between brain function and behavior and considers how injury may affect learning, communication, planning, organization, and relationships with others. The neurophysiologist evaluated Paul’s cognitive abilities and deficits and provided teachers with suggestions and methods to stimulate and improve new learning. In other words, the evaluation was used to help develop Paul’s IEP. When Paul returned to school, the break from constant rehabilitation allowed our days to regain some degree of normalcy.
Friends and Family Relationships: All of our lives had changed dramatically since Paul’s accident. I know Paul felt the absence of the phone not ringing, and of his friends no longer coming by to hang out. With the time that had passed, most of his friends had distanced themselves. Some were just typical self-centered teenagers, but others could not relate to the slowness with which Paul now talked and walked, and could not comprehend the differences, though slight, in Paul’s personality. To his peers, Paul appeared childlike, odd, and different. To adults, Paul was an inspiration of hope. His subtle humor made everyone smile.
Over time, my husband and I and our other seven children began to realize two things: the person we once knew might never be returned to us, and recovery would be lifelong. Because all of our lives had been put on hold for so long while we coped with such staggering changes, we started to nurture all of our family relationships. We gave permission to each other to start moving forward, to begin to go back to our daily routines, including even recreational activities.
Getting a Job: As time went on, Paul’s mobility and his physical, mental, and cognitive abilities improved. He no longer needed the special school accommodations that we had fought for so desperately: the personal aide, the small classroom atmosphere, a personal computer, scheduled rest periods, books on tape, and so forth. At Paul’s high school graduation, he walked to the podium to receive his diploma — no wheelchair, no walker but a clear understanding of all that he had accomplished. But leaving school also meant leaving the only support system we knew. The fight would continue, and we would have to again advocate for Paul to help him find employment and become more independent. Working with our state’s rehabilitation office, Paul gained employment at a local retail store where he started as a greeter, quickly moving up to sales clerk and then cashier.
Higher Education: Paul is not the same person he was before the crash. He walks off-balance, though to his family, it is a blessing he walks at all. His voice is slow and monotone. Yet, we are extremely grateful that he can speak. Cognitively, he may be slightly slower to process information, to form a thought, or to respond to a question. But the reality of his ability to react with maturity, humor, and intelligence is beyond our belief. The tremors and shakes that affect the left side of his body make it hard for him to do almost everything. But his persistence and perseverance are mind-boggling. Ten years after Paul sustained a TBI, he volunteered at the hospital where his life was saved. He speaks at rehab hospitals, medical facilities, and preventive organizations talking about TBI and the importance of wearing a bike helmet. Remarkably, he is in a higher education program, attending Lesley University (The Threshold Program) in Boston, where he is living independently, surrounded by other young adults.
Ten Years Later: Despite all the miraculous gains my son has made over the years, my heart often remains heavy. When I look into my husband’s or my children’s eyes, I can still see the lingering fear, the permanent scars.
To deal with the “new” person who emerges after brain injury, families must mourn the loss of the “old” one who is gone … and then move on to embrace life’s challenges and changes and to love unconditionally. The fragility and meaning of life have indeed become more real as my family has found new qualities, insights, and purpose to our days that would not have surfaced if the injury had not happened. And even ten years later, the sound of an ambulance or the sight of a hospital can evoke tears as we relive and experience flashbacks to that unthinkable day of the accident.
Ten years later, my heart also remains heavy as I think of other families who will receive the unthinkable news that one of their loved ones has sustained a life-altering injury. I understand all too well the grief and uphill battles they are sure to encounter. I also pray that these families will reach out to get help and resources, to have the strength and will to advocate, to never give up … and to keep hope alive.
Written exclusively for BrainLine by Dixie Fremont-Smith Coskie. © Dixie Fremont-Smith Coskie, 2010. www.dixiecoskie.com.