WHERE THERE’S HOPE, THERE’S LIFE Dr. Janet Stum bo Introduction Twenty-two years ago I was leading an enviable life as a veterinary surgeon. I enjoyed every m inute of m y life. In fact, I was in love with it. Then in a single m om ent I lost that life, surviving m assive brain injuries with open skull fractures, in an autom obile accident. Once recovered from the com a, I was given the devastating prognosis: My greatly dim inished vision would never im prove and I would be in desperate pain for the rest of m y life. Brain injuries devastate both the victim s and their fam ilies. The circum stances surrounding them can be horrific - to put it m ildly. Sooner or later you realize that you have lost your whole life and career - and not only the specific job you’d had but your ability to work at anything. That alone is a huge burden for any hum an being to endure. But that com es later. First com es the confusion and pain. Try to im agine waking up tom orrow m orning in som eone else’s body, with som ebody else’s m ind, and with the worst headache you have ever experienced. What would it take for you to com e to term s with tha t ? Then im agine being told that you would have that headache for the rest of your life? I com e from an exceptionally long-lived fam ily. In 198 4, I was young enough to expect to live another sixty years. Sixty years of torm ent. Yet that is what we face as brain injury patients leaving the hospital. A continuous headache which robs us of vision, m em ory and all hope for the 1
future. And what greets us at “hom e” - if we are lucky enough to be sent there, rather than to som e warehouse for the living dead? The strong likelihood of rejection by lovers, fam ily, and friends - that’s what. We are no longer people. We are a potential suicide statistics. To survive all that, even just to undertake rehabilitation, is an enorm ous task for any hum an being. Yet this is the population that you m ust deal with in your practice. Difficult and despairing survivors who have had all the hope beaten out of us, not only by pain and traum a, but by the very words of our doctors and surgeons. Thanks to m y m edical background and m y lifelong habit of never giving up, I gradually im provised m y own rehabilitation, in which behavioral optom etry played a m ajor part. I am a veterinarian, not a physician. Everyone in this room alm ost certainly knows m ore about the hum an CNS than I do. But please bear with m e as I list what I regard as the 3 m ost im portant words to keep in m ind when working with ABI clients. These words are crucial to the rehabilitation of any kind of traum a survivor, but are especially crucial when it com es to the brain injured. I did not find them in any book, m ind you. I discovered them from m y own experience. If you take away from this m eeting nothing but these three sim ple words, I’ll have done m y job. So, here they are: Uniq ueness Hop e Tea m w ork 1. Uniqueness Physicians and surgeons rely on their patients to have identical system s to diagnose & treat: respiratory, circulatory, digestive, reproductive & so forth. But the hum an m ind is som ewhat different. Not only our genes but also our experience and education help to shape the structure of our brains. The result is that each individual has a 2
unique and individual m ind and therefore a unique and individual set of possibilities. To the degree that m edical professionals attem pt to fit all brains into a single m old and prognosticate and treat us according to the nature of the injury alone, they m ake a huge and often disastrous m istake. If I had accepted the prognosis I was given, I would not be standing here before you today. For those of us with behavioral or depression issues – and that is certainly the vast m ajority of traum atic brain injury surivors - I urge you to p lea se, p lea se d o not confuse the p erson w ith their b a d beha v ior. You m ay im agine that such behaviors are the m ain barriers to a successful outcom e, but believe m e, they are sym ptom s, not causes. As one who went through it all m yself, I can tell you that such behavior is a result of the pain and confusion caused by the injuries, com bined with the anger stage of m ourning, plus unbearable frustration and fear. Such behaviors do not necessarily reflect who we are or how we want to be or rem ain. Give us reason to hope, and at least som e of those behaviors will begin to change. 2. Hope Each survivor com es out of that operating theatre in a som ewhat different shape. But the m edical professionals m ust have hope for the patient in order to recognize that. And they m ust also foster hope in the patient if the patient is to m ake the best recovery of which they are capable. Unfortunately, m any do the opposite. They see their patients as hopeless and indoctrinate them and their fam ilies with the sam e view. Such doctors honestly seem to believe that no hope is better than false hope. Well, I have been there. So, let m e tell you THE m ost im portant thing I will say all m orning: Where there is hope there is life. Where there is no hope, there is no life. Most brain injury survivors I have spoken with, both in the US and OZ, had left the hospital suffering and hopeless – and were still suffering and hopeless years and decades later. What could be worse than that? 3
As hum an beings, we need hope. Even false hope is better than none. Pass it on. And please don’t ever dism iss false hope as m ere denial. In fact, don’t underestim ate denial either. The hope that carried m e through years of rehabilitation was the hope of practicing veterinary m edicine again. That was a false hope in that it turned out to be beyond m e. So, you m ight say I was in denial all those years. Yet that denial gave m e a life preserver to cling to when I had no other. Those years of false hope and denial served m e well. They kept m e alive and inspired m e to work on m y sight and get m y pain under control. They kept m e going through m y darkest days. With their help, I discovered not only what I couldn’t do but also what I could. And here I am today, writing books, giving presentations and being an advocate for other brain-injury survivors. 3) Team work During the course of m y rehabilitation, false hope was gradually replaced by the real thing. The first step cam e when I found a chiropractor, who achieved what the doctors had said was im possible – fully relieving m y pain sim ply by putting m y head back on straight. The pain was not banished forever, of course. It returned, again and again, and in fact it still does. But I am pain-free m uch of the tim e, and when m y head does begin to ache, I know where I can go for relief. Also enorm ously helpful was m y speech pathologist – not so m uch for anything specific she did, but for treating m e like an educated and intelligent individual capable of living a full life. But perhaps m ost crucial of all was m y first behavioral optom etrist. Dr. Fuerst. The first tim e we m et, Dr. Fuerst said two critically im portant things to m e. The first was, “We can work on the visual loss due to brain 4
dam age.” The second was, “You have to do your vision exercises at hom e every single day. The only excuse for not doing your exercises is if you have already died.” I followed his advice to the letter and today, when I’m wearing m y glasses, I have 20 / 20 vision across m ost of m y visual field. Dr. Fuerst knew that I would respond favorably to such stringent dem ands, because he knew m e before I ever walked in the door. I had been referred to him by a learning disabilities specialist at the University of California at Davis, one who had taken the tim e to get to know m e and becom e m y case m anager. You have to know a survivor’s individual personality in order to treat them m ost effectively, and this is especially true of the brain injured. That is why a case m anager is essential, to advise and coordinate. That is also why m y third watchword is tea m w ork . Rehabilitation is a team effort. Recovery from brain injury is beyond the province of any one specialist. Neurosurgeons can get us through the initial crisis, but no m ore, and even they don’t do it alone. You should have seen the list of doctors m y solicitors had to pay. BO & VT are just as specialized as the neurosurgeon who takes all the credit. So don’t fool yourselves into im agining that you and your specialty can handle all the needs of your brain injury survivors. Even the greatest m edical genius on earth couldn’t do it alone. It takes a team . Who do we need on the team ? Most survivors will require m any or all of the following: A chiropractor or osteopath for the vertebral injuries alm ost inevitable with TBI An occupational therapist A speech pathologist A psychotherapist LDS for cognitive rehab An educational kinesiologist 5
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