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Jack Sisson's TBI Blog

A hug is duct tape for the soul.

 
Years ago, I remember, I read some quotation to the effect that "just because somebody's handicapped doesn't mean he can't be a jerk."

I myself am hearing-impaired, and understood exactly what the quotation meant: the handicapped, or the disabled, or the special-needs individual, or whatever polite term you want to use -- all such people are people first, and handicapped second. They have the same kinds of neuroses that other people have; the same things (plus a whole lot more) make them angry; and so on. They can be just really difficult to live with.

Ditto, those who live with them. Being a caretaker doesn't somehow magically endow you with superhuman powers of forgiveness, patience, generosity. It doesn't require you to be a saint, and it won't make you one.

Graphic evidence of the clash of human failings -- exaggerated by a disability -- comes from Jacqueline L'Heureux's article, "Do We Have to Crash Our Marriage, Too?" from the Fall 2007 issue of The Challenge, a print publication of the Brain Injury Association of America (BIAA). BIA has graciously permitted us to post a copy of that article (599KB PDF) here on sossisson.com. The article begins:
I never saw the truck coming, stopped on a freeway under a knock-your-eye-out blue sky. My back would freeze for months from the monster grille I never felt mount our car.

I want that day back, to live repeatedly, like the characters in "Our Town" -- every part of it right until the crash. Not because it was special, but because it was so ordinary, effortless -- as no day has been since. I want to start with rising early, clear-minded and happy to make breakfast for my son, who hardly ever touches it, then joke quietly, scruff his hair and send him off to school. I want to say the same thing I have said as he leaves every day since preschool (and his three brothers before him). "Remember, no matter what happens out there, you are loved." He waves me off, smiling at the silly ritual that he is too old for on this day his mother changes forever.

After that day, I was in rehab most of the rest of his high school in another city. His father swung from being angry to coldly withdrawn in response to my traumatic brain injury (TBI), seizure disorder, and chronic pain from my injuries. Rubble continued to rise under the truck long after that Indian summer evening. The debris eventually included my clinical practice as a Ph.D. family therapist, my life's work treating post-traumatic stress disorder (PTSD) patients and their families, a center I founded and directed, my university teaching, and the necessary, but wrenching dissolution of my 33-year marriage.
Think non-TBI'd family relationships are harrowing? Wait till you read the rest of L'Heureux's story.

Note, though, that the piece is not unrelievedly grim. L'Heureux concludes with some helpful tips, among them these:
If You Have a TBI and Your Marriage Is in Trouble:
  • Find a therapist -- it's okay if it takes several tries before you find a fit.
  • In the first 24 months post-injury, advocating for yourself in your marriage, or even using sessions well in therapy, is difficult. You will have problems processing and retrieving information, assessing your own experience, using judgment and finding energy. If your spouse is angry, and the therapist does not monitor the stimulation in the room, you can be "cooked" easily. The most important thing is to ask for help from others. Ask for help in all tasks. Things will get better.
  • Many changes happen in the first two years after the injury and sometimes after that. Don't try to judge how things will be in your marriage by how things are now. Your brain is still healing (and body, if physical injuries are present). You may not be stable on medications due to the changes. If you have PTSD symptoms, get help. It is highly treatable. Look up EMDR [certified clinicians] on the web. Ask if they work in stages, starting with grounding and stabilization.
  • If you are working with a couples' therapist who has no brain injury experience and your therapy is not progressing, call your state brain injury association for mental health providers who work with brain-injured patients.
  • When you call, ask the therapist to send intake forms before the visit. Write things down between sessions as you think of them. Speak up as soon as you get lost in the processing part of couples' sessions -- it's too important. If you need a short break, that's okay, too.

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Rene Magritte, 'Le-Paysage-de-Baucis' (1966), etching on woven paperMuch of the content here on the TBI blog -- especially lately -- focuses on attention devoted by the media to traumatic brain injuries suffered on the modern battlefield. But veterans' hospitals and medical tents are far from the most likely places where you'll encounter someone suffering from TBI. Indeed, you may have to look no further than the next cubicle, desk, assembly-line station.

That's part of the message of a brief publication put out by the Job Accommodation Network (JAN) at West Virginia University. (124KB PDF version also available.)

Never heard of JAN? From their "About" page (emphasis added):
The Job Accommodation Network is a service of the Office of Disability Employment Policy (ODEP) of the U.S. Department of Labor... JAN's mission is to facilitate the employment and retention of workers with disabilities by providing employers, employment providers, people with disabilities, their family members and other interested parties with information on job accommodations, self-employment and small business opportunities and related subjects. JAN's efforts are in support of the employment, including self-employment and small business ownership, of people with disabilities. JAN represents the most comprehensive resource for job accommodations available. JAN's work has greatly enhanced the job opportunities of people with disabilities by providing information on job accommodations since 1984. In 1991 JAN expanded to provide information on the Americans with Disabilities Act.
Yeah: since 1984. Twenty-three years of something very like invisibility, and darn those big-government bureaucracies anyway. [Sarcasm off.]

The invisibility of JAN parallels the invisibility, for the most part, of brain-injured workers. Someone who's been in an automobile accident or suffered a football or boxing injury may or may not evidence physical symptoms, like scars, broken limbs, and other alterations in their appearance. But there's nothing intrinsically visible about a TBI. From the JAN site:
...There are several different types of TBI (TBI Recovery Center, 2006):

Concussion: A concussion is the most minor and common type of TBI. A concussion is caused when the brain receives a somewhat minor trauma from an impact, such as a hit to the head by an object or person or from a sudden change in momentum, such as a fall. It may or may not result in a short loss of consciousness (not exceeding 20 minutes) and can be diagnosed by observing common symptoms such as headache, confusion, and vomiting. Difficulty with thinking skills (e.g., difficulty "thinking straight," memory problems, poor judgment, poor attention span, a slowed thought processing speed) (Brain Injury Association of America, 2006a; TBI Recovery Center, 2006).

Skull Fracture: A skull fracture occurs when the skull cracks or breaks. A depressed skull fracture occurs when pieces of broken skull press into the tissue of the brain. A penetrating skull fracture occurs when something pierces the skull and injures the brain (Brain Injury Association of America, 2006a; TBI Recovery Center, 2006).

Contusion: A contusion is bruising or bleeding of the brain (Brain Injury Association of America, 2006a; TBI Recovery Center, 2006).

Hematoma: A hematoma is a collection of blood inside the body (Brain Injury Association of America, 2006a; TBI Recovery Center, 2006).
With the possible exception of a skull fracture, in other words, everything going "wrong" with a TBI victim is going wrong inside:
...Symptoms of mild TBI include headache; confusion; lightheadedness; dizziness; blurred vision or tired eyes; ringing in the ears; bad taste in the mouth; fatigue; a change in sleep patterns; mood changes; and trouble with memory, concentration, attention, or thinking. The injury may or may not result in a brief period of unconsciousness.

...Symptoms of moderate to severe TBI may be similar to symptoms of mild TBI, but they may also include a headache that gets worse or does not go away, repeated vomiting or nausea, convulsions or seizures, inability to awaken from sleep, dilation of one or both pupils of the eyes, slurred speech, weakness or numbness in the arms or legs, loss of coordination, increased confusion, restlessness, or agitation.
Even those TBI symptoms which are observable can be easily dismissed as symptoms of something else: not enough sleep, drunkenness or hangover, a bad chunk of pork in the lunchtime takeout.

Furthermore, the above list scarcely addresses the most potentially debilitating conditions resulting from a TBI:
  • Depression about not being able to get help with your problem.
  • Depression, for that matter, about not being able to describe your problem adequately so help can be obtained in the first place.
  • The misery of knowing that you know something critical to your job function but can't quite put your finger on it, and the guilt and embarrassment that may go along with that failure.
  • Isolation from your co-workers who have no notion of what you're experiencing.
The JAN site's page on TBI-disabled workers is meant to assist supervisors in making accommodations for these employees. That said, it's worth a visit by anyone with an interest in TBI. It's brief, but eye-opening. And -- not to put too fine a point on it -- you won't be able to see anything at all as long as your eyes are closed.

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