Surviving the journey through TBI.
by Ann Peachman
Jack and Jill went up the hill
To fetch a pail of water.
Jack fell down
And broke his crown
And Jill came tumbling after.
— Mother Goose
Was Jack hospitalized? Did they tell him to go home and rest and he’d feel better in a few weeks? Did he panic when the weeks passed and his headaches continued?
How about Jill? Did she look normal but struggle with short-term memory, word finding, and feelings that made her angry one minute and crying the next?
Jack and Jill were suffering from traumatic brain injury (TBI) and may have experienced these symptoms and more.
Understanding TBI
With 1.5 million new cases of brain injury a year [1], there are Jacks and Jills throughout our communities. Car accidents, falls, sports injuries, and violence can be the single events that change lives for years, perhaps permanently.
Traumatic brain injury occurs when there is physical trauma to the brain. It can be open, as when something pierces the scull, or closed, as in the violent jostling of the brain in a car accident. [2] It is classed as mild, moderate or severe [3], but even mild TBI can have symptoms that affect daily life in a dramatic way and can last for years.
Perhaps Jack and Jill could relate to some of these experiences expressed by a TBI patient:
“All of my energy every day went into trying to be OK. Inside, I was frightened and confused, but I tried not to make mistakes so that people wouldn’t think I was crazy. It was exhausting.
“When faced with making a decision, I froze. Implications of getting it wrong seemed huge. I was powerless to make a move, convinced I was crazy.
“My emotions were an irrational roller coaster.
“I felt vulnerable; I was vulnerable.
“I was trying to function in a fog.”
Symptoms
Although there are common symptoms, every individual is unique. Factors such as the person’s age and health before the accident affect recovery.
The severity of the injury can be a factor, although sometimes the milder injuries take the longest to recover from. Signs such as depression or fatigue could have many causes. Not everyone has every symptom, and some symptoms are subtle, making TBI difficult to diagnose.
In his online Traumatic Brain Injury Survival Guide, Dr. Glen Johnson identifies symptoms common to sufferers of TBI. [4]
Headaches. If you’ve always had headaches, you may discount this, but if they have increased in frequency and the pain is greater or different, you should take note. Keep a “headache diary” for a week, noting when they transpire, how long they last, and where on your head they occur. Rate the pain on a scale of one to ten. Show this to your doctor on your next visit.
Memory. Short-term memory is often affected, a frightening development. Realizing that you can’t remember what happened 15 minutes ago or where you put things can affect your home life and work, and undermine your self-confidence.
Word-finding. You may be on the verge of saying something, and the right word will escape you. This happens to everyone on occasion, but if it’s a regular occurrence after an injury, TBI may be the cause.
Fatigue. If you’re recovering from an injury, you will feel fatigue. As your body battles back, exhaustion may persist, and you may find it difficult to get through the day. Remember that emotional trauma can cause physical exhaustion as well.
Changes in emotion. The “emotional roller coaster” referred to by a TBI patient is a vivid description of the turbulence often experienced. A normally even-tempered person will become angry or cry with little provocation. Depression can be a consequence.
Changes in sleep. A hospital stay, medications, and sleeping through the day during recovery can affect sleep patterns. You may find yourself waking early or having trouble getting to sleep. This makes dealing with other symptoms especially difficult.
Emotional overload, concentration, distraction. Some people with TBI find a crowded room, background noise, or a classroom distracting. They can’t think or process information in this environment. Concentration is impossible, and even the slightest noise of a cough or scraping chair becomes a distraction. Often students with TBI need to take exams in a quiet room with unlimited time.
Impulsiveness. With some people, the social filter is removed when their brain has suffered an injury, so they say or do things without considering the consequences. Impulse buying can also become a problem. Decision-making is stressful and overwhelming, or they give a decision no thought at all.
Disorganization. If you were an organized person before your injury and now you can’t seem to complete a task or find anything, it may be another symptom of TBI.
Coping
Even a few of these symptoms can make every day a marathon through dense fog. Fear, confusion, and frustration overwhelm, and what used to be a simple task can seem impossible. How does the person with traumatic brain injury cope? Here are a few practical suggestions
Communicate with your doctor. Write down your symptoms; don’t rely on memory. Emotional and mental stresses are just as important as the physical. Ensure that your doctor has a full picture of what you are dealing with.
Educate yourself. The best weapon for fear is to learn all you can. As you understand what has happened in you brain, you can assist the healing process.
Use supports. Your doctor can help you explore what medical supports you need. Would a physiotherapist or a speech therapist help you? Would you benefit from an anti-depressant for a time or a support group, or both? Memory specialists can give you tools. Don’t be afraid to examine each problem and look for solutions together.
Don’t use “crutches.” Some TBI sufferers have turned to alcohol and non-prescription drugs to numb the pain. But they are temporary solutions and often make the situation worse. People can experience more headaches, sleeping disorders, and memory problems. Nothing is resolved.
Get to know your new self. Rather than mourning what you have lost, learn who you are now. Which situations are difficult for you (such as a noisy, crowded room)? Limit your exposure to them. “I will go to the party only for an hour. I will go to the family reunion but stay outside where I feel more in control.” Think through problems ahead of time, and look for creative solutions.
Get enough sleep. If you are coping with a sleep disorder, this may be impossible for a time, and you may need to seek medical help. However, it is tempting to push yourself, especially if you are having a good day. Know your limitations, and if you need more sleep, get it. Every problem looks worse when you are sleep deprived.
Build your support network. Besides medical supports, you need friends and family to listen, uphold you on rough days, and celebrate small victories. Often people want to help but have no idea what to do or say. Tell your friends and family clearly what you need, and be sure to be thankful when they offer it.
There are support groups specifically for TBI patients. Some people find it helpful to talk to others going through the same experiences. Ask your doctor where to find a group.
Give yourself a break. Do you hear negative voices inside your head, rehearsing every failure? That was so stupid! Why did you do that again? Can’t you do anything right? Don’t listen to them! Remind yourself that you have an injury that is slowly healing and that you are having some challenges. You can be harder on yourself than you would ever be on someone else.
Maintain your sense of humor. It’s tempting to take yourself too seriously. Give yourself permission to laugh.
Amy was with a friend after her brain injury. On a warm April day in Michigan, they walked along the shoreline and saw a man ice fishing. “I know I get confused,” Amy said, “but is there something wrong here?”
Find strength in faith. Whenever we go through hard stuff, it’s tempting to ask, “Why did this happen to me? Why am I hurting? Why is God allowing this difficult time in my life?” We may never know the complete answers to those questions, but we can know that God is with us in our pain. He doesn’t promise us we won’t have trouble; in fact, He promised us we would! “In this world you will have trouble. But take heart! I have overcome the world” (John 16:33b, NIV).
God’s words to Joshua are like a strong arm around your shoulder in the toughest times. “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go” (Joshua 1:9, NIV).
Jack treated his injuries with “vinegar and brown paper.” We’re not told how that worked for him, but thankfully, you have a multitude of options and supports available as you make your journey toward recovery.
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1. www.bianc.net/ (as of 9/23/08)
2. www.munley.com/traumatic_brain_injuries.html#1a (as of 9/23/08)
3. www.tbiguide.com (as of 9/23/08)
4. www.nrio.com/faq.html (as of 9/23/08)
Getting Up Again
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