It’s funny the things you remember about the day you find out a loved one had a traumatic brain injury. For me, that day in the summer of 1987 is misty; what I remember most was that the Hallmark cards I was re-shelving in the card shop where I worked were sympathy cards. “Jana, your brother Dwight has been in a car accident on the Parker Head Road. He is at Maine Med., you need to get there now,” my Aunt Marilyn told me as she walked in, tears streaming down her face. That began my journey with the world of families of TBIs, individuals with Traumatic Brain Injuries.
My fiancé at the time, Shawn, was the first person I called. He drove me to Portland, and when we arrived in the ICU he tearfully warned me not to go in to see him…"that shouldn't be your last memory."
For Shawn had lost his only elder brother in the same fashion years before. His older brother died of traumatic brain injuries in the 70’s after being struck by a drunk driver. I pressed on and went in to see my brother anyhow.
My sweet, gentle older brother Dwight lay on the hospital bed hooked up to a ventilator, IV’s, and had shunts drilled into his skull to relieve the massive swelling of fluid on his brain from his injury. The entire right side of his body was swelling, as he sustained broken bones from his shoulder to his leg. He had been driving to Popham Beach that morning, and had fallen asleep at the wheel.
He was 32 years old at the time, single, and had already been in an awful crash 14 years earlier. In that first crash, he had been in the back seat of a car and was propelled from the back seat through the windshield, crashing face first into the pavement. After months of a wired jaw and bed rest, he began exhibiting symptoms of schizophrenia, something he suffered with from that time until this second accident. We have no idea to this day whether this injury caused the disease, or merely sped it up.
Dwight lay in a coma for a few weeks, and during that time my family and I took turns talking to him, reading to him, and, for me, singing his favorite songs. Did it help? Who knows. But, he did come out of the coma, but not like one would see in a perfect television show way. He was like an infant. He drooled, he giggled, he whined, he cried, and he was angry. Words came slowly, and he appeared amazed at simple things like the shadows on the wall. He was transferred from Maine Medical Center to New England Rehabilitation Center, and began the slow road to a new life as a man with TBI.
For those of you who are familiar with brain injuries, they vary tremendously. Some younger patients “bounce” back rapidly, and depending on where the injury was and the severity, can regain all or most of their functions before the injury.
The Brain Injury Association of America website lists the following facts:
What is a traumatic brain injury?A traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from "mild," i.e., a brief change in mental status or consciousness to "severe," i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.
How many people have TBI?Of the 1.4 million who sustain a TBI each year in the United States:
• 50,000 die;
• 235,000 are hospitalized; and
• 1.1 million are treated and released from an emergency department.
The number of people with TBI who are not seen in an emergency department or who receive no care is unknown.What causes TBI?The leading causes of TBI are:
• Falls (28%);
• Motor vehicle-traffic crashes (20%);
• Struck by/against (19%); and
• Assaults (11%).
Blasts are a leading cause of TBI for active duty military personnel in war zones.
Who is at highest risk for TBI?• Males are about 1.5 times as likely as females to sustain a TBI.1
• The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds.1
• Certain military duties (e.g., paratrooper) increase the risk of sustaining a TBI.3
• African Americans have the highest death rate from TBI.1
What are the costs of TBI?Direct medical costs and indirect costs such as lost productivity of TBI totaled an estimated $56.3 billion in the United States in 1995.
What are the long-term consequences of TBI?The Centers for Disease Control and Prevention estimates that at least 5.3 million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of a TBI.5
According to one study, about 40% of those hospitalized with a TBI had at least one unmet need for services one year after their injury. The most frequent unmet needs were:
• Improving memory and problem solving;
• Managing stress and emotional upsets;
• Controlling one's temper; and
• Improving one's job skills.
TBI can cause a wide range of functional changes affecting thinking, sensation, language, and/or emotions. It can also cause epilepsy and increase the risk for conditions such as Alzheimer's disease, Parkinson's disease, and other brain disorders that become more prevalent with age.
In the years since my brother Dwight’s accident, he moved from Maine to Massachusetts to a head injury facility, and in 1991 back up to Maine in the River Ridge Hospital in Kennebunk. He went through years of behavioral issues… which is common… and cursed like a sailor. They all go through that, even the sweetest of older women. I’ll never forget watching an old man crying in the hall at the facility in Massachusetts, softly saying, “She never spoke an ugly word her whole life. Not ever,” as his brain injured wife cursed from her wheelchair in her room.
Now, Dwight is beginning to age rapidly. He has a sweet temperament, much like he did before his accident. He leans to one side and has lost a lot of strength in his arms, partly from the seizure medication he must be on, and from the severity of the original injuries not healing well. He is happy where he lives, enjoys watching the Red Sox and New England Patriots, and enjoys seeing our mother as she visits every Sunday. He used to come home for occasional weekends and holidays, but cannot do that anymore as he is too difficult to transfer without a special lift.
He speaks really clearly, which is rare for the brain injured population, but his short term memory loss prevents him from really following a lot of conversations. His memory of the past is very clear, however, and appears to be confused when we tell him events that are happening today. He can hold his guitar and find the chords with his fingers, but will say, “I used to be able to play.” The synapses between the left and right hemispheres of his brain that used to tell his fingers how to play are forever damaged- as is his former talent for drawing and watercolor painting. He will hold a pencil, pen, or brush in his hand- only to lay it down slowly, telling you that he “just can’t do that now.”
What about the schizophrenia? Almost unbelievably, the second accident wiped it clean. He no longer is plagued with irrational, paranoid fears, no longer hears voices. Just as an accident seemed to have triggered that disease, a second one took it away. A blessing in disguise, as our mother is fond of saying.
We are fortunate in our family to have such a beautiful, specialized facility that is so tailored for his unique needs. We are grateful that he was able to live through such an awful accident. And above all, we are blessed that this gentle soul has been in our lives to remind us daily how precious life is, and how fragile our human bodies are.
