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.