Heeding the Silent Screams: Brain-injured Survivors are increasing in B.C., but help is slow in coming.
By Kerry McPhedran
Three years ago, John Goddard, co-owner of a Burnaby car-parts import business, was travelling on Highway 1. Rush-hour traffic was slow when he was rear-ended, but he was still left with neck and back problems and a moderate brain injury. His wife, Desiree, a psychiatric nurse at Riverview Hospital, soon noted that her easygoing, mechanically minded, articulate husband had become depressed, paranoid, difficult to live with, and clumsy to the point of being accident-prone.
A year and a half later, on October 21, 1993, the phone rang. Desiree had apparently fallen asleep while driving home on the Trans-Canada after her night shift. She rolled the car. Miraculously, she survived a massive brain injury and severe facial injuries. It was John's turn to be the caregiver. He visits Desiree at Maple Hill Centre-an extended-care unit in Langley Memorial Hospital-five days a week and brings her home to spend weekends with their 11 year old son, Lee. Until recently, she was not able to speak and was fed by a tube through her stomach. She remains partially paralyzed. "She doesn't usually complain," Goddard says. "It's almost as if she wants to protect me. But one of the most pitiful things is when she screams and no sound comes out." His voice catches. "To see a person scream is terrible."
This year, it could be your turn. This year, another 6,000 British Columbians will have their brains smashed, torn, bruised, infected, or cut off from oxygen: 4,800 will survive with varying degrees of damage. If you drive, work, cross streets, swim, dive, have surgery, ski, in-line skate, drink, snort cocaine, put up Christmas lights, play a contact sport, or ride bikes, motorcycles, or horses, then chances are that Dr. Duncan Murray, clinical director of the BC Rehabilitation Society's brain/stroke/neuro program, has already seen someone like you. "I've got kids as clients who are cocaine addicts and have had strokes. I've got ordinary folks that god just puts a finger on," Murray says.
If you're a male under 30, start the countdown. If you're female, remember that strokes-which account for 2,000 brain injuries per year-are now an equal-opportunity disability. Half the stroke victims BC Rehab sees are females under 50. Regardless of sex and age, you've definitely got what it takes.
There's a lot we don't know about your brain, an exquisite, delicate, jelly-like organ that weighs in at about three pounds and comes with its own helmet, but we do know it controls virtually every aspect of our being. Here's what happens to it when you go for a header, according to American clinical psychologist Dr. Barbara J. Schrock.
You're biking along First Avenue in Kits, headed for a Sunday morning coffee at the Bread Garden. No helmet. A puppy darts out. You swerve as you brake, go over the handlebars, and in the time it takes to blink an eye, your head snaps sideways and hits the curb. You might lose consciousness briefly or not at all. It doesn't matter. Hit with sudden deceleration, rotational forces, and shearing strains, your brain stretches and millions of brain cells throughout the cerebrum stretch beyond capacity and die. As your brain bounces around inside its bowl on impact, the frontal lobes become impaled on the bony protrusions inside the front of your skull. Result: contusions, hemorrhages, and more dead areas. All this shearing and tearing results in microscopic and widespread damage that seldom shows on a CAT scan. But like a termite-ridden house, the structural integrity may be completely undermined. In the coming months, cells adjoining the damage degenerate. The mass of brain tissue shrinks.
IF YOU AWAKE IN A HOSPITAL, you might be unable to speak and be paralyzed on one side. Even with a minor injury, in the days, weeks, months, and even years to come, chances are you'll experience headaches, memory loss, poor attention and concentration, fatigue, irritability, an explosive temper, feelings of deep depression, vertigo, ringing in the ears, and difficulty fitting in socially. You'll cry unexpectedly and often. You may gain weight because you can't remember you've eaten lunch twice already. Toughest of all, you probably won't understand that you are any different.
Think about it, says Murray. "You're asking the survivor to have some insight, the very thing most people with frontal-lobe damage lose. You're asking him to be somebody he isn't to explain something he doesn't have."
A brain injury doesn't necessarily mean a loss of intelligence. But it often does entail a loss of ability to function. "One of the things people don't understand-even in our field-is that when you have lost something as a brain-injured patient, you don't get it back," says Murray. "You develop strategies for getting around it."
Every brain injury is unique. You might cope very effectively, or you might be one of the thousands of walking wounded with mild brain injuries-the effects of which are anything but mild. You might go back to work. You'll certainly go back home-and helplessly watch your marriage and job fall apart. Doctors might even fail to diagnose a brain injury. But friends, family and coworkers will know you're not the same person.
If you're lucky, you'll be hit by a car or a mugger rather than by a stroke. If you're lucky, you'll be bonked on the head at work instead of tackled in a pick-up game of touch football. All these can result in a brain injury, but as a brain injury survivor in British Columbia, how you were injured will dramatically affect your future. And 700 people with moderate to severe brain injuries this year will need life-time services that, in many cases, are not available to them in B.C. either because the services don't exist or because they don't have the funds to buy them.
If you've got money-through the Insurance Corporation of British Columbia, the Workers' Compensation Board (which also serves victims of a crime), a successful lawsuit, or private disability insurance-you can at least buy some of what services do exist. That might be as little as speech therapy once a week or as much as building your own customized home, depending on the amount. Vancouver financier, Alan Birch, once earning in the six figures, learned the hard way when he let his disability insurance lapse because the $300-per-month premiums that would have paid him $5,000 each month were too high. He was injured in a fall while helping a friend with a renovation. His net monthly provincial disability cheque is $407.
Part 7 of the provincial Insurance (Motor Vehicle) Act pays a maximum of $150,000 over a lifetime for no-fault claims, plus up to $300 per week for those with disabilities and little or no other income. You will not be handed a lump-sum cheque. Ask professionals working with brain-injury survivors and you will hear kudos for WCB. ICBC, they say, is reluctant to recognize minor brain injuries (which account for 80 percent of survivors) because it is leery of fraud.
If you have no money -and 49 percent of brain-injury survivors don't- your trouble starts once you leave the hospital or specialized rehab facilities such as BC Rehab's G.F. Strong Centre at Laurel and 26th Avenue (if, that is, you happen to be referred to one of its 30 inpatient beds or its 30-space outpatient program). Your Medical Services Plan covers these, but it does not cover other services usually needed, such as speech therapy or psychological counselling.
Your option is the Provincial Head Injury Program, whose $4.1-million annual budget can only serve 150 people. Another 150 people are on the waiting list. HIP is meant to provide funding for residential needs, some rehab, some equipment-such as wheelchairs-and some day programs. But it only serves those over 19 (despite the fact that one-third of survivors are under 19) who have suffered a traumatic brain injury, usually one involving a blow to the head. Victims of strokes, near drowning, surgical complications, and brain tumours need not apply.
IT'S NINETEEN YEARS since the April day in 1976 when seven-year-old Darcy Beka slipped off a rock bluff while playing hide-and-seek. In the years that followed, Darcy lived at home in Clearwater only because there was nowhere for a young, profoundly brain-damaged child to go.
"We had no money. I begged for help; Darcy begged for help," remembers his mother, Doreen Wallin. Help didn't come from the politicians she wrote to. When he was 22, Darcy was charged with starting a house fire that killed three neighbouring children. On December 23, 1993, he tried to hang himself while locked in Riverview Hospital's Forensic Psychiatric Institute in Port Coquitlam, where he'd been sent as a result of the crime. The resulting second brain injury now confines him to a wheelchair. "I hate to say it, but I'm glad he hung himself," says his mother. "He finally got help. But if he'd got it earlier, three lives might have been saved." After a stay in Surrey Memorial Hospital, Darcy was transferred to Westsyde, a residential program for brain-injury survivors in Kamloops.
As the mother of 18 kids-nine of her own, nine from a second marriage-Wallin knew that she had a deeply disturbed kid on her hands after Darcy's fall. "His body came home from the hospital, but it wasn't my son." Wallin learned to love the new child, and she looked without success for help from the Ministry of Health and Ministry of Social Services, especially when behavioural problems, including aggressiveness and delusions, became worse as the hormonal changes of puberty kicked in.
"I was desperate. One night, not too long before the fire, I seriously thought I should stand Darcy outside in the yard, get myself high, and hit him with the car. Then at least he'd get some help through ICBC. Does a mother have to think these thoughts?"
The Provincial Head Injury Program's failure to serve those under 19 isn't it's only deficiency. "The program will not even fund the cost of a neuropsychological evaluation that is key to setting the direction for rehab," says Dublin-born John Simpson, still in the trenches after a 30-year career working with catastrophic-injury claims despite his frustration with the system. After seven years with ICBC, he became a founding director of the BC Head Injury Association-the primary provincial nonprofit support and advocacy group for survivors of brain injury-and now runs his own company, which provides case management for people with brain injuries. Simpson also volunteers 30 hours per month doing pro bono work with brain-injured children and their families.
Help finally came for Darcy Beka when John Simpson wrote to Daniel Hawe, director of the Forensic Institute, stating that he personally felt the Ministry of Social Services and the Ministry of Health were more responsible than Darcy for the deaths of the three children and that they had better come up with some funding to house Darcy. They did.
"The difference in Darcy since he moved into the Westsyde Care Home in Kamloops is amazing," Doreen says. "The staff is so compassionate and loving. He's finally happy." She says he and seven other brain-injury survivors have their own bedrooms; they go bowling, go to movies, and hang out at restaurants.
"Children are the ones who really suffer," says Simpson. "There is simply nowhere in British Columbia for a profoundly disabled child to go." Children like 14-year-old Elliot Murphy, struck and dragged off his bike by a hit-and-run van. He remains in Sunny Hill Health Centre for children, unable to see, hear, eat, drink, talk, or move. It is time for him to leave acute care, but there is nowhere for him to go. To put him in extended care with the elderly is unthinkable to his parents.
Ask Peter Van Rheenen-executive director, policy and planning, in the ministry of Health's provincial programs, which includes HIP, if $4.1 million is enough to meet his program's annual needs and he will give you an honest no. Ask him why the province this year allocated $7.4 million more to it's AIDS funding and $4 million more to arts and culture (for a total of $16 million), and why the 1995/1996 Head Injury Program's $4.1 million represents no increase beyond wages and inflation, and he only says "I'm not the one to ask."
He will tell you that brain-injury survivors have access to other money and services through different Ministry of Health programs, such as continuing care and home care. He's right, but even to those with an uninjured brain, it's a confusing maze of services that don't always meet people's needs.
"What makes it complex," says BC Rehab neuropsychologist John Higgenbottam, "is the fact there is no single organized service. You've got all these bits and pieces of services out there, if they exist at all. This is what the families and survivors find so bewildering. Most community services they approach have no (government) funding. So they just give up. We've downloaded the problem onto the family, and often the family falls apart. And there are major economic and social costs to family breakdown."
In fact, the so-called silent epidemic of brain injuries is a recent phenomenon. Thanks to heroic road-side efforts, emergency-room skills, and the mandatory use of seatbelts in vehicles and helmets for motorcyclists, more brain-injured people are surviving. Just how many became obvious when the 150 private insurance companies that grouped together as ICBC in 1974 first pooled their statistics on brain injuries.
Now we have more survivors with more serious disabilities-from physical paralysis to serious cognitive deficits. This means a greater need for services and programs that sometimes just aren't available.
The consequences of this lack of services are tragic for survivors and their families. Divorce rates are 98 percent after three years. Without help, only 12 percent of the brain-injured return to work; with help, 88 percent do. The cost to society is huge. One in six extended-care and long-term-care hospital beds in this province is occupied by a brain-injury survivor. For British Columbia tax-payers, the estimated annual cost is $650 million. And that doesn't include the cost in lost productivity, family breakdowns, and the effects of disturbed behaviour. People with brain injuries may show poor judgement or act impulsively and aggressively. In short, ideal candidates for go-directly-to-jail.
"We'll save your life," says BC Rehab's Murray, "and you'll hate us for it."
He's not kidding. Neither was John Simpson when he posed a tough question during a CBC radio interview on brain injuries. "If the support isn't there after survival, I think the conscious decision has to be made: Do we keep people alive? Yes, we have excellent paramedics, ambulance crews, emergency departments. But if survivors don't progress as the system wants them to progress, they are abandoned. Ontario christened that 'post-coma abandonment'. It happens all the time. If you do keep people alive, then you owe them a quality of life."
"I feel like I'm pushing the elephant." John Goddard says of his frustration in navigating the complex web of private and government services and funding sources on Desiree's behalf. "But once in a while, I think I've made the elephant stop and turn around. Once or twice, it may even have said, 'Look- a mouse!'"
Goddard believes the staff at Maple Hill are compassionate, but there are no rehabilitation services available. With rehab, Desiree will likely improve; without it, she will slip back. Although Desiree has the limited Part 7 ICBC insurance she can draw on, ICBC's policy is not to cover rehab in a hospital facility. That includes extended care. Catch 22. MSP will not cover rehab once you leave acute care for extended care. Yet ICBC doesn't provide enough money to pay for a private group home where Desiree could get rehab. Even at a minimum rate of about $4,500 per month, her $150,000 could last less than three years.
Goddard's dream is for the system to change so that Desiree, 43, can live in a smaller group home with other brain-injured people closer to her own age, and have home visits of up to three days per week. He'd like some support to keep up with housekeeping, but even when cluttered, their house is a peaceful two-day retreat from the shrieks and repeated phrases that are the signature of facilities for older, senile people.
"Often," says John Simpson, "extended care is simply warehousing. And, to be fair, the extended-care facilities were never set up for younger brain-injured people. Yet some staff, like those at Delta Hospital's extended-care unit under Meg Roberts, do a magnificent job. And there are those who should be run out of town."
"People are falling between the cracks. People without money. People with mild brain injuries, undiagnosed or untreated. Children who will never recover the quality of life they might have had," says BC Rehab's Higenbottam.
Nevertheless, the determination of many people with brain injuries- and the support of their families- proves that good things are possible.
The doctors in Castlegar couldn't promise Lucille and Greg Ottewell that their son would be alive by the time they drove to the hospital from their home in Nelson. "It was only a tackle in a Grade 11 rugby game, but they told us Chuck's brain looked like a head-on at 60 miles per hour," says Lucille, who sat with Charles through three weeks of coma and meningitis and later taught him to speak and read-for the second time. "He ought to be a vegetable-he's anything but." Lucille credits this to both a quick diagnosis by the first doctor who saw her son and the 12 years of determined effort by Charles that got him out of his wheelchair, up from 80 pounds to 155, and into his own subsidized apartment in Burnaby. There, he lives on $656 per month, happiest when he is working with other brain-injured youth. "I was an athlete. It still hurts me deeply, because I can't run around with a football."
There are hundreds like Charles. They seem to manage, but life is tough. Intelligent, articulate, determined, and a good writer, Charles sometimes wishes he had less going for him mentally and more physically. "At least then I'd be more balanced." He didn't use his cane at first because he felt it marked him as disabled, and he found out that his occasional stumbles labelled him a drunk. "The joke is lots of young brain-injured people do use drugs and alcohol, but I never was a stoner or a drunk. Even if I wanted to be, I can't afford it."
He remembers the years of rage, the girls who called him a mental retard when he was learning to speak again, the nights he swore he was going to kill himself, and the feelings of isolation, that he was the only one. "I'm still angry; my life is a struggle every day. Sometimes I can't carry a coffee cup from the counter to the table. I have terrible insomnia, which means I can't take a regular job." He says the left side of his body does not respond to his commands, and he has slight double vision.
What he wants to do is keep working with brain-injured youth. "I've been there." He works on their social behaviour: the swearing, the inappropriate comments to women, remembering to brush your teeth. When a rehabilitation magazine published part of his personal journal, he dedicated: "To my parents for support and understanding and to other brain-injured individuals. In time things will improve."
Randy Spencer's prognosis was similarly grim. A Vancouver neurosurgeon told his family that his brain looked like scrambled eggs after his car was hit on June 26, 1993, by a taxi driver in Osaka, Japan, where the Vancouver designer-sculptor and his brother were working. Medical prognosis: Randy would likely never come out of the coma.
His family-parents Hazel and John, brother Chris, and sisters, Barbara and Sydney-refused to give up. Family and friends lined up in the corridors of Vancouver Hospital to talk to him, read to him, hold his hand, and play rock 'n' roll on the radio. Barbara quit her job in Toronto so she could work six to eight hours each day with Randy at BC Rehab. At Christmas, the family took him home- still in a coma- to their parent's hazelnut farm in Rosedale, just outside of Chilliwack. Fifteen months after the crash, Randy wrote his first words- "Help me"- before slipping back into a comatose state. Three weeks later, Barbara was there when he picked up a pen. "He wanted to know how long he'd been in Pearson (Centre). He wrote a list of what he wanted: TV, videos, a bar to get in and out of bed." Barbara called their parents in Rosedale. Over the phone, they heard Randy speak a barely audible "Love you." It was the first time they had heard their son speak in 16 months. Randy has begun painting again- great, bright abstract canvases.
Families don't come much tighter than the Spencers', or more determined. Barbara credits BC Rehab staff for the caring, positive attitude there. But although she understands the need to free up beds in acute care or tertiary rehab, she also resents the push that she feels brain-injury survivors and their families get from day one. Randy has received no insurance money from the accident. The problem was where to send him once he left BC Rehab. The Spencers refused to consider extended care and pushed for extensions at BC Rehab. Recently, they found an innovative solution.
Choices for Independent Living, a new provincial initiative under the Ministry of Health's continuing-care program, allows you to set up a society-in this case, the Randy Spencer Client Group Support. CISL funds nine hours of professional care per day. "They give us a cheque. We hire the caregiver and administer the funds," Barbara says. "For Randy to be at a long-care facility like Person, the cost is apparently $510 a day; this works out to one-third of the cost." Because Randy can't be on his own right now, the other 15 hours of each day will likely be covered by a student who will share the two-bedroom apartment, plus family friends and volunteers. It's a great solution for Randy, but not every survivor or family could put this together.
Your feedback is appreciated.