Learning from Traumatic Brain Injury
What’s it like to have a brain injury? Lori Mertz shares her personal story and offers resources for recovery.
February PechaKucha event at the State Room. One of the presentations has sparked a creative solution for a problem I’ve been grappling with a while. I don’t have paper in my purse, but I do have a pen—and some body limbs available for notes, which I take copiously. When the lights go up, my friends burst out laughing. I look like a fast tattoo artist had his way with me in the dark.
It takes a lot of work—intention—to keep this machine—me—running. I learned how to do this after a bicycle accident and subsequent traumatic brain injury (TBI) I sustained nearly 11 years ago. Because of this experience, I know where all my (metaphorical) Achilles tendons are. I learned about them, along with many other things, from my doctor, my speech therapist, occupational therapist, physical therapist, counselor and spiritual therapist, friends and family, and all the amazing others who have at one time or another comprised my health care team.
When I get tired or overwhelmed or overstimulated, or sometimes excited, as at the PechaKucha gathering, my short term memory gets worse. I’ve learned I have only a certain amount of space and energy and when it fills up or is exhausted, I panic. In an effort to remember, I compulsively write things down. As part of my success strategy I also filter what and who I’ll give my energy, attention and focus to.
March is National Brain Injury Awareness Month and I want to acknowledge it and help others understand this prevalent injury a bit better. Traumatic brain injury is super prevalent today, but IT often gets overlooked or dismissed. People say, “It’s only a concussion.” A concussion is a brain injury, and it may have longterm repercussions. When you have a TBI, there’s usually no visual reminder to others—no cast, limp or scar—and they forget, or may not know, that you are injured. For instance, when I say or do something bizarre—speak too loud, blurt out something odd, walk into a wall or tree (yes, I still sometimes do this), or speak poorly or in broken, non-sequential sentences or with a stutter, people forget why.
So, back to that night after PechaKucha… On the drive home, I pull over several times to write more notes, afraid I will forget my flowing thoughts. Once I laugh out loud, realizing I’ve pulled into the parking lot for Child and Family Services. I take it as a reminder that we all need support! I didn’t use that service after my injury, but Vocational Rehab changed my life, for which I am deeply grateful.
As I drive, I tune into what is playing on the radio, “…you make me smile like the sun, fall out of bed, sing like a bird, dizzy in my head, spin like a record crazy on a Sunday night. You make me dance like a fool, forget how to breathe, shine like gold, buzz like a bee. Just the thought of you…” (from “Smile,” by Uncle Kracker). Exactly! That’s how I feel inside.
When I speak about my strengths and weaknesses (“challenges,” my friend Tom would be quick to correct) I realize how intentionally I have had to live my life since my TBI. Music is an example of where I get really intentional. I manage my focus and keep it on those things that generate joy. I listen to songs that celebrate, songs that make me smile and want to dance, songs that lift me up. Lyrics like in “Smile” are reminders to myself of the things I want to remember and stay focused on. These days there is a ton to distract me and all of us: horrific stories delivered fresh, daily, almost none over which I have direct control over. What I can do is stay focused on the things I can impact and the world I interface with every day whether it’s at work or at my corner coffee shop. When I need help, I ask and I don’t give up. And, I always get an answer, which I have found comes from focusing on solution.
My life is intentional. Note the word, in-ten-tional. It’s a ten.
So what do I want? I want people to know me and that I’m not crazy, although, I do feel that way sometimes—sometimes I feel it a lot, even when I don’t say it out loud. It’s true, I do get confused and get lost in neighborhoods I “know.” Sometimes I do talk too loud or blurt out the wrong thing at the wrong moment. It’s true. But as I pull over to write that line, I hear lyrics on the radio: “I thought, I thought of every possibility. And I know someday that it’ll all turn out…”
My head injury doesn’t define me, but it’s a part of me and the truth is I still need support. I don’t want to sound broken, so I don’t talk about it, but it’s there. I don’t feel broken – in fact, I think I am the very best iteration of myself yet—but sometimes I limp. My heart is filled with love and gratitude for so very much, and yet I struggle.
Ever read a book and see yourself in it? I did—Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out, by Claudia L. Osborn. Ever have someone say “you should see that movie”? I did: Memento, about a man with a head injury who tattoos his body with things he wants to remember. I never watched that movie. I was already living it, The notes I wrote on my body weren’t permanent tattoos, but ink just the same.
Brain injury has likely affected someone you love—perhaps it has affected you directly. Even though I am “better,” no words can truly convey my gratitude when a friend makes me lunch or my neighbor down the street brings me dinner. It’s the little things we do that we aren’t even aware of that make a difference every minute of every day. Of course, everyone needs support, kindness and compassion.
I don’t sweat the small stuff any more. I forget people and faces, I can’t concentrate in noisy or chaotic environments, I’ve been known to leave the tea kettle on or the water running. In spite of sticky note reminders all over my house, my house can be messy, the trash cans are out too long, there are dishes in my sink. These are not life-altering disasters, just details, blips on the radar. I choose to let them go and not judge them or myself. I’ve got bigger fish to fry!
So far nothing important has fallen through the cracks. It’s not about the place; home is an inside job and wherever I am, there it is.
I’ve learned so much about myself; I’ve learned that I orient well around others, which is something I didn’t have awareness of before my accident. I thrive on structure, and I love partnership in all aspects of my life. Structure creates an environment for me where I can thrive and share my gifts. Each of us has our own gifts to give to live, and in my case my TBI has allowed me to uncover and deliver these gifts in areas I never previously considered. That’s part of the magic that continues revealing itself. It’s not about the destination, it’s about the journey.
TBI is most frequently the result of a traumatic physical event such as a car or bicycle accident. Sports, especially contact sports, often result in TBI, which often is diagnosed (or misdiagnosed) simply as concussion. However, after each concussion, the possibility and probability of getting a more serious brain injury grows, recovery takes longer and longer, and the possibility of permanent damage or death increases dramatically.
TBI can be caused by external physical force (such as a fall or being hit), or internal damage caused by lack of oxygen or a tumor. Concussion is the most common and least serious type of TBI.
Mild traumatic brain injury (MTBI), also referred to a closed head injury or post-concussive syndrome, is the name given to those head injuries where there is no open wound, but enough force to shake the brain inside the skull. In this instance, the individual may or may not lose consciousness. Often there are no visible signs of a brain injury. Some people will have obvious symptoms of a concussion, such as passing out or forgetting what happened right before the injury, but others won’t. With rest, most people fully recover from a concussion—some recover in a few hours, but others may take up to a few weeks. In rare cases, concussions cause more serious problems. Repeated concussions or a single severe concussion may require surgery and may lead to long-lasting problems with movement, learning or speaking. Because of this, it is important to contact a doctor if you or someone you know has symptoms of a concussion.
Signs and Symptoms
For a list of TBI symptoms, go to this website [biau.org/about-brain-injuries/clues]. Symptoms range from mild to severe and can last for hours, days, weeks, months or years, and can include physical, emotional, cognitive, social, verbal and personality changes.
They can also fall to one extreme or the other on a spectrum: for example, sleep disturbance is a symptom of brain injury, but that can mean sleeping too much, too little, intermittently or not at all. Many symptoms are noticeable immediately, but others may appear later. Learning disabilities, for example, are not immediately recognizable, but appear even years later, as the more immediate symptoms improve or resolve.
Treating TBI with nutrition
With brain injury, the entire body can be thrown out of whack, and often it takes special nutritional counseling to regain lost strength and energy and to help the body rebuild lost tissue mass.
Water, protein, and simply getting enough calories are critical components of recovery.
Your brain is an electrical system (even though the voltage is very low!). Water is an electrical conductor, so without water, your already short-circuited and concussed neural connections are less able to function. The brain is 85% water, so keep hydrated!
Protein is the other big essential—needed for growth and development of the body and critical with respect to brain function. Neurotransmitters, the signalling chemicals used by the brain, are made of amino acids provided by protein in the diet. The neurotransmitters serotonin, dopamine and norepinephrine are all integral to mood stability, appetite and sleep. A diet that supplies enough protein will support these functions. Nutrition or simply put, eating, is really critical! Lots of mini meals are the TBI sufferer’s friend. Without decent nutrition, the brain will cease to function even before the body will. However, as important as eating and drinking water are, we have a catch-22—it’s hard to eat if (1) you’ve lost short term memory and you forget; and (2) brain injury has killed your appetite and you’re not hungry!
The brain is a very soft organ, approximately the consistency of firm tofu. It is surrounded by spinal fluid and protected by the skull. While the fluid around the brain acts like a cushion, if if your head is hit hard, your brain can crash into the inside of your skull and get bruised a little or even begin to bleed.
Knocks on the head can happen thousands of different ways, but some of the more common dangers are car and bicycle accidents, falls, playground injuries and fights, and sports such as football, hockey, soccer, skiing or snowboarding.
Age and existing health are also contributing factors to the risk of a TBI. Children are very susceptible to brain injury, and falls are most common among both the elderly and the very young. Alcohol and medication use are also common contributing factors in falls.
Balance declines with age, and people over the age of 65 have a very high rate of injury due to falls.
Some elderly people also take medications that can affect perception and/or balance, and others may have visual limitations or orthopedic problems that may contribute to the likelihood of falling. Wearing proper footwear, clearing hazards from the home and making sure of regular exercise can help older people avoid falling and brain injury.
Violence is also a factor. Gunshot wounds account for a small proportion of TBIs (10%), but a high percentage of related fatalities (44%). Nine out of 10 people who incur TBI from a firearm die. Domestic abuse, including shaken baby syndrome, is another common cause of violence-related TBI.
“As a result of my TBI I have been given the gift of a new perspective ; a state of presence in all aspects of my life—what a blessing,” says Lori Mertz, who sustained a life-changing head injury in a bike accident 11 years ago. From it sprang Just Bee, a creative endeavor that started out as a journal for her children—reminders to them and to herself of what is really important—“a celebration of life and the magic I see and experience in each moment.” Mertz says Just Bee came from un-learning “doing” and has become her new life philosophy. It is inspired by bees, which have been venerated since antiquity for their life-giving properties, and by her dog Bert, who is the “be” in Just Bee. “It is my hope that the messages woven through my designs will touch, move and inspire all who come into contact with them, encouraging everyone to pause and slow down, to savor the small moments in each day and the beauty that is the core essence of each of us.”
Patience and compassion
Support and the understanding of others is a critical aspect of recovery for those suffering a TBI. It is easy to get impatient with someone who is acting erratically, and for the patient himself the experience of not being able to think or act properly can be extremely frustrating.
Around 75% of those with TBI who return to work will lose their job within 90 days if they don’t have adequate support in place, but having a TBI should not automatically mean that you have lost the skills to perform your previous job. Every brain injury is different, and patience is a key part of rehabilitation.
Overall, the prognosis for individuals with traumatic brain injury is good. However, recovery time varies from person to person, and may take from months to years, and rarely proceeds at the rate an individual would like.
People with brain injury need more quiet time and more time for themselves. Doing too much or trying to force performance at a pre-injury pace or level can hamper recovery as well as cause further damage.
In the case of a mild TBI (concussion), about 75% will improve substantially within the first three to six months and about 25% will have persistent symptoms and a slow recovery of function after six months.
In the case of a more severe TBI, this timetable shifts with the average recovery period ranging from six to 24 months. Although much function can be regained or relearned, sufferers are often faced with the challenge of having to re-learn how to do their lives.
In my case, I went from being able to multitask very efficiently to being able to concentrate on only one thing at a time. It’s turned out to be a gift. It has forced me to learn new ways of being successful at work, but most of all it gives me presence: pure, unobstructed, full-force presence.