Jul 132009
 

Recovery time depends on how severe the injury was. If someone was unconscious for less than thirty minutes, they will usually recover within three months. If someone was unconscious for more than 24 hours, their recovery may take up to a year….

What Does It Mean to Be Recovered from a Brain Injury—What Is the Definition of Recovery? Rehabilitation helps people to recover but recovery may not mean being just like the person was before. One way to think of recovery is that the person with the injury (impairment) has acknowledged that there is a change, has learned techniques to do things differently or compensate for problems, and has decided to do as much in life as they can. It means enjoying life as much as possible and feeling good as a person while being aware of one’s limitations. It means feeling valuable to others. It does not mean being exactly the same as “before the injury”. Recovery is an ongoing process, and after all, everybody changes over time.” (Brainline.org, reprinted from Rehabilitation Institute of Chicago, LIFE Center, copyright 2008)

At 3 months, my psychologist suggested to me that I’d suffered a closed head injury* and should get checked out. Months, or was it years?, later my doctor told me that where I was at at 2 years post-TBI (traumatic brain injury), is where I’d remain for the rest of my life. That horrified me and angered me. He also told me I had the brain of a 70-year-old (I was in my 30s). The rehab team at the Toronto Rehabilitation Institute, a medical facility covered by OHIP, told me each brain injury is different; even if two people suffered the same exact kind of injury, the outcome would differ, sometimes markedly. They also told me discrete type injuries, where the injury is just to one part of the brain, eg, left frontal, are more recoverable than diffuse, where it’s all over the brain. My frontal, temporal, and parietal lobes were all damaged; I also had coup-contrecoup injuries. Lucky me. They also told me I was improving at a remarkable rate, ahead of typical rates, while I felt I was in the slow lane of a frozen glacier. That was at the post-1-year mark.

Meanwhile, ordinary folk were telling me of spontaneous recovery of memory at the 10-year mark or continued progress even 12 years after the initial injury or a succession of brain injuries.

I was probably discharged early from medical rehab (new admin imposing one-size-fits-all-minimum standards); still they felt I was ready to go on my own. I had met the above definition of recovery, in that I had learnt to use the compensating strategies and could read and write at an acceptable level (meaning not at a vocational level, not even at the level of reading a whole letter to the editor from beginning to end), except I hadn’t accepted the TBI even though I had acknowledged I had changed markedly, I did not feel valuable, I was way too aware of my limitations as I was able to remember what I was like before, I did not enjoy life for I had no affect and everything, even eating breakfast, took tremendous amounts of effort, you cannot imagine how much. I cannot see how any TBI-survivor is able to meet this definition of recovery after a year, never mind 3 months, except possibly in the limited views of doctors and unless they’re part of the cohort that recovers quickly spontaneously.

I think doctors have a severe handicap, actually three, when it comes to understanding TBI recovery: (1) They do not follow the patient past the acute stage or the early adaptation stage. It takes years, decades to recover, and unless the doctor sees the patient over at least a course of a decade they have no idea, none, zip, zippo, nada, none, about how much change happens either spontaneously or much more importantly as a result of treatment. (2) The medical model offers no treatment beyond surgery and drugs; but those only treat dramatic injuries and act as band-aids. Compensating strategies are NOT treatments. They don’t help the person re-integrate into society in any way, shape, or form. On the other hand, psychologists are using far more sophisticated and permanent methods of treatment that do, which are not compensating strategies, yet doctors don’t speak to psychologists. Heck, my doctors didn’t even speak to each other. And (3) Doctors have a very low standard of recovery.

We are a knowledge-based society, we live in the information age. Cognitive skills are an absolute necessity to get on in North America and most of the world. These skills include numeracy and literacy. We must be able to do simple math and be able to comprehend and learn from what we read. We see this in the fact that high school dropouts are less and less able to achieve the kind of success stories that they did a generation ago. Despite the short attention span engendered by television, sound byte stories, and text messaging type communication, we in fact need to be able to concentrate just to Google some basic info, or follow a conversation, or enjoy ourselves at a party. But even moreso, we need the ability to pay attention in order to do the kind of work this society is moving towards, the kind of work the Premier just announced is coming to Toronto. TBIs kill concentration. And that’s just one cognitive skill out the window. Yet nowhere in that medical model of recovery is the ability to concentrate, which is the foundation for recovery of all other cognitive skills, mentioned.

Compensating strategies are BS. All they do is keep you from going starkers until you’re well enough to seek treatment on your own (for me) or just give up and accept much diminished capacity. They give you a modicum of control, but they in no way give you back your sense of humour, your curiosity, your affect (emotions), your ability to focus in a quiet place or a busy place, your ability to make a decision from the trivial to the large, your ability to solve problems even the most ridiculously small problems, your social graces, your impulse control, your motivation and initiation, your numeracy and literacy skills, your ability to learn and adapt, your hobbies, your energy. I could go on. Research is even suggesting that for the rest of one’s life, no matter how good the real recovery, it will always take more effort for one with a TBI to do a task than it would a non-injured person. That effort means less energy, always.

Only spontaneous healing and treatment can restore lost cognitive skills. Back in the 1980s, I learnt in university that the brain and spinal cord have cells whose sole function is to repair damaged neurons. The only problem is they move very, very, very slowly; hence, the so-called miraculous awakenings after 10 or 20 years of coma that we read about. Those miracles that stump doctors are just the repair cells finally getting the job done. You’d think doctors would know that. But then they’re still in the dark ages of treatment so it’s not surprising they don’t expect people to wake up from comas. I just watched a so-called miracle story on PBS last night on the POV show. It was about Jason who had a near-fatal brain hemmorhage. He’s back playing the guitar — though you can see he has no affect and moves like an old man despite being in his 30s. Not because of any treatment by the doctors, beyond the dramatic to save his life, but because his family had the right stuff. They had the love and the smarts and the willingness to sacrifice their time to stimulate him every hour of every day for over a year in order to restore him. You just don’t get that level of rehab anywhere. And without that stimulation, he would’ve ended up in a nursing home, along with 99 percent of his severely brain injured fellow sufferers. Just thinking about that angers me so much.

The establishment have a piss-poor standard of recovery. They don’t seem to know how to build on the brain’s own healing mechanisms. And they don’t even know that it can take years to discover the fullness of the deficits and thus years to recover. Their ignorance is harmful. I can see family and friends of the injured reading that definition I quoted above, looking at the injured one who’s still struggling at 1 year, 2 years, and snapping at them as to why they’re taking so long to recover and to get on with their life already.

The medical system needs to stop tossing the traumatically brain injured onto the trash heap of mediocrity and start working with psychologists on realistic standards of recovery and real treatment that allow people to participate in this society, not some 19th century agrarian one.

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* In closed head injury, one mechanism for brain injury stemming from the physical forces associated with the trauma is the impact/compression of brain tissue inside the skull. At impact, momentum shifts the brain and can cause it to strike the interior of the skull. This creates a bruising (contusion) at the site of impact. The brain might then rebound and impact backward to injure a second site of contusion opposite the primary point of impact. The initial injury is referred to as the coup injury, whereas the injury opposite the point of impact is referred to as a contrecoup injury. Focal contusions are generally more likely to occur in the frontal and anterior temporal regions of the brain due to the bony extrusions of the cranium in those regions (Yeates, 2000). As the brain compresses and stretches, this energy can result in stretching and tearing of nerve fibers, particularly along the axon, which can result in more diffuse damage, which is in addition to focal damage caused by contusion. (Brainline.org, From Preventing School Failure magazine, heldref.org)

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