“Write what you know” is one of the oldest admonitions given to writers. The writing community, editors included, should heed that admonition when articles address the brain injured community.
There is, perhaps, no other field in which good writing is badly needed more than this one. Consider that brain injury is the leading cause of death and disability in the world. Consider that over five million people in the United States alone are known to be living with an injured brain. Consider that brain injury is the signature wound of soldiers returning from Iraq.
Neuropsychologist Dr. Glen Johnson estimates that 75% of brain injury patients do not have insurance that covers brain injury rehabilitation. In 1991, my wife was treated for several months in a neuromedical facility at a cost of $700 per day. Since health care costs have outpaced inflation like Secretariat running against a rocking horse, we can safely assume that the cost has spiraled since then.
Unable to afford proper treatment, people who have suffered brain injury and their family members must turn to the written word. In most cases, the written word has failed them.
My wife was given a photocopied book entitled Life After Head Injury. The introduction states, “This book is written for you – the head injured patient. It is not for your family, not for your therapists, not for your employer, not for your attorney and not for your rehabilitation nurse. …it was developed with only you in mind.”
On page 1 came this paragraph, “What happens to a person’s brain or “control center” can be as different as the circumstances that surrounded his injury. There can be many complicating factors such as localized damage, skull fracture, length of time in coma, amount of time in post traumatic amnesia, secondary medical factors [hemorrhages (bleeding), seizures, infections], pre-injury personality and family support system. However, there are some generalizations that can be made that may apply to your situation in some degree or another. We do now that what occurs is a lessening of cognitive function, accuracy of response and speed of response. These factors occur because of the diffuse damage associated with a head injury (minor levels of damage in many areas of the brain). The diffuse damage is caused by the movement of the brain within the skull. This movement, which is coup, contracoup and centrifuglar in nature (forward, backward and opposite side and circular) causes damage to many parts of the brain, especially when the brain strikes the small bony protuberances (bones that stick out) on the inside of the skull.”
The writer actually stated in the fourth sentence of that paragraph that “we do now that what occurs is a lessening of cognitive function.” Really now! Do you really know that?
The lessening of cognitive function associated with brain injury means (1) difficulty with words, (2) slowed mental processing time, (3) shortened attention span, (4) easily distracted, (5) prone to frustration, guilt and depression.
In that one paragraph, the writer caused the brain injured person to run up and down, mostly up, the Cycle of Response. Beth and I devoted an entire chapter of Brain Injury Survivor’s Guide to the Cycle of Response because understanding it and overcoming it is crucial to a person living with brain injury.
Difficulty with words and a slowed mental processing time quickly leads to mental fatigue, step one on the Cycle. Mental fatigue brings its own set of questions: why can’t I understand this? Why can’t I do this? That opens the door for step two of the Cycle: confusion.
It is a very short step from confusion to frustration, step 3. Why can’t I understand this; I could a few weeks ago. Why can’t I do this; I could a few weeks ago. And, perhaps, for a few minutes the air turns blue around the victim of brain injury as it becomes more evident that – yes, my life has changed.
I am not as good as I once was. I am not as smart as I once was. Guilt, step 4, begins to creep in. I’m not as good of a father as I once was. I’m not as good of a husband as I once was. I’m not as good of an employee as I once was.
Step five: depression. Unchecked depression leads to separation. A brain injured husband may separate himself from his employer. He may separate himself from his wife and children. He may even separate himself from life itself.
That’s why we believe it is crucial for brain injury victims to understand the Cycle of Response so they can recognize it and take necessary steps to back down the ladder that leads to depression. That’s why we offer many ways to help people do that in our book and on our website.
But the writing and editorial community needs to understand the Cycle of Response. They need to understand as much as possible about what’s it is like to live with brain injury. Brain injury is never welcomed into someone’s life. It is never expected, yet it is life-changing.
Writing must be easily digestible: short paragraphs, short sentences. Write to the shortened attention span of someone who has trouble with words. Know that any loud noise will distract them from your writing. In most cases, a brain injured person has no short-term (or, working) memory. Once distracted, what they read prior to the distraction is gone.
Throw out all the rules. Write in conversational prose. Talk to the person. Try this: memorize that paragraph from Life After Head Injury. Bring it up in a conversation with your friends. “You know, I read the other day that” – quote the paragraph – and watch your friends.
Watch their eyes divert away from yours. Not only was it too much to comprehend in one mouthful, it allowed for self-distraction. It caused mental fatigue in someone who has not suffered a brain injury.
Many times a brain injured person will look at the length of the paragraph and make a conscious decision not to read it because they know it will be more difficult than they are willing to try at this time. They may even say, “Oh, well. I’ll read that later.” Of course, with no short term memory they will never remember to go back and read it.
I’m sure you write, like me, because you want to provide information or entertainment to people. That means you want people to actually read what you write. If you decide to write to a community that badly needs information like the brain injury community, learn how to write to them.