Getting started after a brain injury |
It was Christmas week and Grandpa lay unconscious in the ICU. His wife, his three sons, their wives, and seven grandchildren paced the waiting room, worrying, not knowing how things would turn out.
He'd been riding his hybrid bicycle on the hilly road around the lake near his house, and the park ranger making his hourly circle of the lake found him lying unconscious in the road, his bike 20 feet away. An ambulance rushed him to the KU Trauma Center, where he was diagnosed as having a brain injury.
I was Grandpa.
The Centers for Disease Control and Prevention estimates that 1.7 million people sustain a brain injury every year in the United States. The number of spouses, children, parents, and others affected by these injuries is difficult to imagine. Some people with brain injury recover in a few days. For others it takes years. Some live with a disability forever. And each year from brain injuries more than 50,000 Americans die.
My brain injury occurred 10 years ago. The little I remember from the month after the accident is sketchy. One day, three weeks after the accident, I "woke up." My wife tells me I had been in a coma for three days, mumbling and thrashing about. Then I began responding to the nurses' instructions. Although I was pleasant, I didn't know my wife, other family members, or the friends who came to the hospital.
One of my scant memories is crawling out of bed and trying to walk to the bathroom. But I didn't know that I couldn't walk. As a result, I collapsed onto my knees. The fall burst open the deep cuts that had been closed after my accident. I remember clinging to the side of the bed, staring down as a dark pool of blood formed between my knees. For several nights afterward I was restrained.
For a month, hospital professionals guided me through daily therapy. Gradually I relearned basic tasks such as feeding, bathing, and other essential skills of self-care. I moved about in a wheelchair. In my final days there, I learned to use a walker.
When I was released to go home, months of outpatient occupational therapy began. The therapy helped me regain control of my hands, so I now drop things less often. Physical therapy taught me to walk without a walker. The therapist had some trouble getting me to swing my arms with the vigor she wanted before she learned to adjust her position behind me. It turns out that after 17 years as a church pastor, I was uneasy about bumping against her breasts on my back-swing! Her guidance enabled me to switch from the walker to a quad-cane, but I no longer ride a bicycle. My wife gave mine away while I was in the hospital—go figure!
In spite of speech therapy, some words still come out with a lisp or hardly at all. I speak more slowly and softly than before, sometimes substituting an incorrect word for the one I meant to say. And after four and a half months of relearning, I was cleared to drive again.
Even though Social Security and two insurance companies said I was "permanently disabled," my therapists consider me a success story. So I'd like to share some principles that helped me get started after my brain injury. At the very least, they may help you know you are doing your best to regain as much independent functioning as possible.
Do everything your doctor or rehab therapists tell you to do. The doctors and nurses told my wife that caring for me might be more than she could handle. That would mean putting me in a nursing home or adult daycare. So for several months I spent five hours a day on exercises my therapists prescribed, such as picking out 20 pennies that were mashed into a blob of molding clay. They say that a primary reason I recovered so well is that I did everything they told me to do.
Don't quit any exercise until your therapist tells you to. The same applies to medications your doctors prescribe. In 17 years as a pastor, I never yelled at a church member (and I'm not an especially patient person). But six weeks out of the hospital, I decided it was time to wean myself off a drug for impulse control. One day, using my walker, I approached the door to a mall where I went to exercise. As I yanked it open, a teenage girl hurried forward and pushed the door open. I snarled, "Will you just let me get through first?" I thought she was trying to beat me through the doorway. But my wife whispered, "Jim, she saw your walker and was trying to push the door open for you." I started back on the impulse-control medicine until the doctor said to stop.
Listen to your family. That includes paying attention to the observations of others. After I finished driving rehab, my wife said I needed better attention focus. The psychiatrist treating my brain injury prescribed a drug for attention-deficit disorder. It made no difference that I could detect, but my wife said she saw an immediate difference in my ability to keep my attention on the road, which made her feel a lot safer. Your brain injury may have changed you in ways of which you're not aware. You may have needs or deficits that you don't see but are obvious to others.
Exercise. I walk two miles three or four days a week. That relaxes me, helps me sleep, and builds up my strength.
Keep a day-planner. A common result of head injuries is inability to remember. I, too, have short-term memory loss. So write it all down, even the little things. Our trash is picked up early on Monday mornings, so it has to be put out Sunday night. I write that down. I write down haircuts, writer group meetings, and pulpit supply commitments. I plan every day. Before the brain injury, I would sometimes have more than a dozen things I wanted to do in a day and I would often work until I got them all done. Now I've learned that I get overwhelmed and confused if my to-do list has more than four or five items.
Prioritize. I've learned to sit down every morning and decide what's most important, what's next in importance, and so on. I number each task. Then I write Task #1 on a sticky note and stick it on top of my list of things to do that day. That way, all I see is that one task. When I finish it, I look underneath to remind myself of Task #2. If at day's end I've only completed two things, at least they were the two most important things.
Do it now, and write it down. If something needs to be done, I've learned to do it now. If I can't do it now, I write it in my calendar so I'll be reminded to do it later. A good habit is to look at your calendar first thing every morning to see what you need to do that day. And at the start of your day, move everything you wanted to do yesterday but didn't accomplish over to today or a later day. That way nothing important gets lost.
Learn to do less. I've learned that I may not be able to do big things anymore, so I will do little things in a big way. Since my brain injury, everything takes two or three times as long. I used to run six miles in 48 minutes; now it takes me an hour and a quarter to walk two and a half miles. But I must not forget that when I got out of the hospital it took me three hours.
Don't be afraid to try, or to try and fail.
Don't be ashamed—of yourself, of being in a wheelchair, of your cane or walker, of speaking slowly, of stammering or slurring words, or of a physical deformity. You are what you are. If you do as much as you can with what you've got, that's success.
