By: W. Lewis
Brain injury is both an exciting new and terrifying field of medicine, but it’s not a new injury. It’s been with us throughout all time. However, not much was really known about the brain’s ability to heal or therapeutic approaches to promote its healing until the last century.
Reverse Engineering The Most Marvelous And Complex Cellularly Controlled Quantum Computer Ever Imagined
Many fields of science and medicine have since examined the structure and anomalies of the brain; testing, mapping, analyzing, theorizing, dissecting and repairing, resulting in great strides being accomplished in acute care. But, those seeking to explore and understand the human brain from a rehabilitative perspective have found themselves trying to reverse engineer the most marvelous and complex cellularly controlled quantum computer ever imagined.
This article wasn’t written by those people. It was written by a survivor of brain injury to provide the public with an overview of brain injury and the current state of rehabilitative brain injury care from the perspective of someone living with a brain injury. It seeks to inform and inspire progressive and innovative solutions to very serious issues that are faced by a very large and vastly underserved population of society, the brain injured community.
More People Survive Brain Injury And Live Longer
Medical advancements have resulted in far more people living after a brain injury every year, both from surgical and pharmaceutical intervention. And that has created an increasing population of brain injured persons who now live much longer lives. However, there has not been an accompanying increase in post acute rehabilitative care funding, meaning more people are living with brain injuries without care than ever before
Post-Acute Brain Injury Care
The earliest known post acute care for brain injury patients was either being placed in an institution – temporarily or permanently – or being released from hospital and left to live as best they could. Sadly, the majority of post-acute brain injury care remains very much the same to this day.
If continued care is provided, it’s based on the severity of injury and even then is usually a time limited offer. Again, to this day the vast majority of survivors get no post acute care at all, leaving them to try and make sense of a world that no longer makes sense where they are often expected to do what they may no longer be able to do.
Medical And Financial Ignorance
The opportunity certainly exists to do much better, but it’s ignored despite our knowledge, despite our advanced technologies, despite our ability and despite the need. Why? Because of a lack of public education and prevailing medical and financial ignorance. And I say that with the greatest respect. Please let me explain.
A major obstacle to delivering progressive post acute care rehabilitative services at the community level is the horrible lack of information and training about the effects of brain injury that’s provided to medical students and related professionals. Few doctors actually have any brain training beyond the memorization of cellular, cerebral and glandular structures once necessary to pass anatomical classes. Nurses receive equally little training, leaving most brain injury patients being treated quite literally by people who ‘once read about it in a book’.
Academic Tail Chasing
One of the primary reasons medical professionals know so little about brain injury care is due to ‘academic tail chasing’, which is simply the medical profession listening only to itself, refusing to listen and assimilate the knowledge from real brain injury experts; the survivors of injury and those who provide care to them.
Another hurdle to adequate care is funding from health agencies. Their responsibility is delivering health services to overall populations, including acute care, continuing care, public health and mental health. However the challenges faced in the health sector are many, including expectations to operate within limited funding; with responsibility for still ensuring cost-effective and efficacious, evidence-based and outcome-driven services.
So, while many provide some ‘cherry picked’ in-house brain injury rehabilitative services (to the easy cases), most of the agencies contract services from generic care providers with little to no brain injury experience. This practice shamefully delivers the same level of treatment to persons with a recoverable disability, as to those with a permanent disability.
Community Non-profit Brain Injury Organizations
In regions lucky enough to have community non-profit brain injury organizations, public health agencies often contract their services and may provide them with limited temporary funding. However, in my experience the agencies view and treat these amazing community resources with professional disdain, which is reflected by the miniscule level of funding and support that they provide them with. Remote and rural regions are often left with virtually no brain injury services at all.
To compound care issues, brain injuries are put into ‘silos’ such as ‘brain injuries’, ‘strokes’ and ‘concussions’. In fact, they’re all serious injuries to the brain. This inefficient and self defeating approach prevents brain injury funding from being consolidated and used for the development of much needed brain specialized rehabilitation centers.
Medical Denial Of Neurological Pain
An often forgotten issue about brain injury is that a great percentage of neurological pain experienced after injury (as with many other injuries and illnesses) is denied by physicians who lack the equipment to verify neurological pain. Therefore, they refuse to prescribe pain relief on the basis that ‘it’s all in their head’. This forces survivors to turn to other sources and substances to provide relief. Those who do receive pain relief are often temporarily given highly addictive painkillers. We need only look to the streets to see how well medical denial and prescribing addictive drugs has worked out.
Last but not least, a massive problem faced by brain injury service development is that those who establish and administrate government brain injury policies and services are selected according to administrative skill levels, rather than for having brain injury knowledge and experience. They then consult medical experts who have as little or less information than they have, rather than consulting those who provide life-long post-acute care, programs and services to people living with a brain injury.
In fact, in the years that I worked in the field of brain injury, to my knowledge not once did anyone from a government agency ever take advantage of these extremely experienced experts to improve brain injury services, even when their help was offered. This has led to what I consider to be the brain injury blind leading the brain injury blind as the brain injured are forced to hungrily shiver in pain out in the cold.
A Few Facts About Brain Injury
People Fake Brain Injury To Avoid Working:
The truth is that almost all people living with a brain injury who do not work for a living cannot work and would give virtually anything in the world just to be able to. Sadly, there are always going to be people that try to play any system, so yes, there are people who try to fake brain injury to avoid working for a living. Fortunately, they are few. Unfortunately, they make public officials distrust real survivors.
Public official suspicions and distrust are often compounded because brain injuries are frequently invisible. These invisible injuries have caused many, many brain injured people not to receive the important help that they truly need, leaving them struggling, desperate and afraid.
Brain Injury Does Not Make Us Stupid:
Brain injury does not make us stupid. It merely impairs our ability to process and respond. Intellectually, it’s like we’ve been buried alive. We’re still here inside, trying to make sense of things that no longer make sense, panicked by what’s happened to us.
But, our injuries often leave us vulnerable to being abused and taken advantage of, because we learn to distrust our brains and to trust the brains of others, often to our chagrin. Again, we’re not stupid, but like everyone else, we do make some stupid decisions.
Brain Injuries Are As Real As A Broken Leg:
It often appears that there’s nothing wrong with us because our injuries are internal. However, our injuries are very real; just as real as a broken arm or leg. But, brains heal much slower than other parts of the body and to varying degrees. And while all survivors share a common injury, the severity and effects of each are very different. So, the timeline for healing and rehabilitative needs will vary greatly from individual to individual. The bottom line is that that though we not appear to be injured, we have been a suffer silently.
An Injured Brain Gets Better:
Brains immediately begin to repair themselves after injury to the best of their ability and to their greatest extent; restoring, re-routing and/or re-assigning neurons to assist or take over the functions of those damaged. Without help, this process can be very, very slow and limited. To the tune of many, many years. With help, the restorative process happens much faster and with far better results. Proof of the brain’s ability to adapt are stories like “The Girl With Half A Brain”. And in fairly recent news, celebrities like Kevin Hart have shown how effective and powerful getting the help needed after injury is.
There Are No Magic Pills:
Some effects of brain injury can be chemically controlled, but it’s critically important to note that injured brains often react to chemicals very differently than uninjured brains. For instance, a narcotic may act as a stimulant, or an anti-psychotic may cause psychosis. Injury may also significantly diminish or increase a drug’s effect. Sp, prescribing drugs to brain injured persons should not be done by general practitioners without consulting medical peers who’re well versed in the pharmaceutical contraindications caused by brain injury.
Brain Injury Is Not An Excuse For Crime:
Brain injury is never an excuse for crime, however impaired abilities, unrelieved pain and desperate circumstances leave a significant number of survivors feeling forced to commit crime in order to physically and emotionally survive.
Based on my knowledge and experience, approximately 95% of the crime committed by people living with a brain injury can and would be prevented simply by providing them with adequate financial assistance, adequate pain relief and community based post-acute brain injury rehabilitation. The cost of doing so would be far offset by the huge reduction of medical, legal and social costs.
Brain Injury Is Not A Mental Illness:
Brain injury is not a mental illness, though it may cause effects that can mimic symptoms caused by a disruption of mental health. Needless to say, we really dislike being treated like we’re mentally ill. We are hurt and healing, not sick. Yes, many of us experience meltdowns when emotionally flooded (https://youtu.be/M7VEuMNgQSU), but they are short and we feel horrible afterward. Because many brain injuries are to frontal lobes, our ability to filter and control emotions can be impaired. This means that when something angers us, we often express anger long before we have the ability to control it. But, rarely are survivors violent. Scared, afraid, confused and terrified, yes. Violent, no. Just give us two minutes or so of quiet time to process and we’ll be fine.
Experts Do Not Know What We’re Going Through:
Trust me, unless you have a brain injury, you have no idea of what we’re going through. We’re strangers in a strange land trying our best to figure things out. We suddenly forget, get angry, become sad, and feel incredibly stupid. We hurt those we love, make bad decisions, hate what’s happened to us, and we can’t seem to make anyone understand what we’re going through. Our world is torn apart. We’re torn apart. And it seems that so few want to help.
Brain Injured People Have Issues With Rules:
We don’t want to have issues with rules, but we often just can’t help ourselves. Impaired short term memory, a lack of social filters, impulsiveness and inability to control our emotions causes rules to be broken. It also severely impairs our ability to participate in twelve steps programs, remember important appointments and abide by conditions. Needless to say, when the expectation to follow certain rules is placed on many of us, it often leads to homelessness, clogs the judicial system and stresses emergency services.
Concussion Is A Brain Injury, Not A Boo Boo:
Little upsets me faster or more intensely than hearing a brain injury being sugar coated by the term ‘concussion’. Concussion is a medically demeaning term that’s used to diagnose ‘mild brain injury’, despite the fact that mild brain injury is an oxymoron. All brain injuries are serious and need to be treated accordingly.
At best, the term ‘concussion’ trivializes brain injury. At worst, the very moment that concussion is diagnosed, all further medical interest, investigation and care of the brain injury terminates. This has resulted in people who have had very serious injuries being sent home only to die hours later, thus the establishment of laws like Rowan’s Law (https://www.ontario.ca/page/rowans-law-concussion-safety).
It’s my opinion that calling a brain injury a concussion is nothing short of intentional misdiagnosis to facilitate medical laziness. It’s also socially and judiciously irresponsible to do so because it prevents hundreds of thousands of people from getting the help that they desperately need to rehabilitate, at tremendous personal and public cost.
Brain Injury Is Not Temporary:
It was once falsely believed and taught that brain injury ‘would go away’ within a matter of weeks or months. With horrific results. Fortunately, researchers at the University of British Columbia are among many around the world currently debunking the myths of concussion by validating the fact that the effects of brain injuries – of all severity – can be and often are life-long.
There Isn’t A Lot Of Help Available:
Brain injury survivors often slip through huge gaps in the healthcare system. For instance, most survivors with addiction problems are unable to participate in substance recovery programs due to poor emotional filters, concentration and memory. There’s also negative stigmatism felt by survivors who are forced to seek and receive services from organizations that publicly identify as ‘mental health’.
Currently, all over North America there is a huge lack of equipment, services and programs specific to post acute brain injury rehabilitation available to the general public. However, there are excellent services available for those with deep pockets.
Luckily, some cities have community non-profit brain injury organizations that provide a whole host of services to survivors and their families. However, the non-profits are forced to go literally door to door begging for money to provide the critically important rehabilitative services government refuses to provide.
Brain Injury Does Not Turn People Into Vegetables:
The vast majority of brain injuries are not physically debilitating, and with just a few simple adjustments to lifestyles, many survivors are able to do almost everything they could pre-injury. But they are the lucky ones. Very serious brain injuries can leave people in vegetative or comatose-like states.
Of them, many will remain significantly challenged and require intensive extended care. However, they are not ‘vegetables’. They still hear, see and feel, even if we lack the technology to accurately assess them. Only those who are so emotionally disabled by ego, power and corruption that they allow the needs of hurt and damaged human beings to be neglected become ‘vegetables’. Specifically, rotten vegetables.
15 Things That All Government Officials Need To Know About Brain Injury
1. There are thousands of government employees who are brain injured but unaware that they are. To improve their work environment and with sensitivity for those being served, office environments need to incorporate noise reduction measures and upgrade florescent light ballasts and bulbs. I also recommend reducing visual distractions and factoring intellectual impairment into office and service planning. Here are few reasons why:
After brain injury, the almost imperceptible flicker that’s produced by older fluorescent lights make it feel like they’re walking into a dimly lit nightclub with a million incredibly bright and fast strobe lights flashing. The strobe effect’s compounded by the spectrum of light put out by standard bulbs, which produces a painful glare that often causes headaches and emotional flooding. A simple solution is to insure all fluorescent ballasts are T-5 and replace the bulbs with those that emit a spectrum of light that eliminates the majority of visual discomfort and headaches caused by fluorescent illumination, such as those used by the G.F. Strong Rehabilitation Centre in Vancouver, BC, Canada.
Brain injury also leaves many survivors with tinnitus and/or far greater audio sensitivity. The heightened sensitivity seriously affects their ability to focus and function. For instance, many survivors hear the hum of a computer or water fountain across the room at the same volume as a person standing in front of them speaking, or a fire engine going by in the hall with sirens screaming. This is incredibly distracting. These simple changes will ease public and employee subliminal stress and reduce subconscious distraction tremendously.
Because most brain injury survivors live with untreated post traumatic stress syndrome, they remain on ‘high alert’ at all times. This means that they subconsciously monitor all things at all times to determine any possible threat. The slightest sound, smell or motion can disrupt their thought process. So, the less distractions that there are, the greater focus people will have and less stress there will be.
2. Hospitals need to provide information packages to family/friends of people who suffer a brain injury to help prepare them for life after injury. People think hospitals already provide such information, but extremely few do. Most patients and family members are usually told next to nothing other than, “We’ll just have to wait and see”.
3. Make preliminary screening for brain injury mandatory in the criminal justice system. This provides valuable research and helps to insure that brain injured prisoners in custody have access to help if they want it; help proven to reduce recidivism. Screening is important because multiple penal studies have revealed that up to 82% of persons serving time have had at least one brain injury.
4. Every year people suffer brain injuries at the hands of others, but few ever get screened or treated for their injury. So, also make preliminary screening for brain injury mandatory in all instances of criminal assault where the head has been injured, such as intimate partner violence.
5. Establish a progressive non-gender based anti-violence program that’s focused entirely on the importance of preventing brain injuries from violence, such as from fist fighting and domestic abuse – providing the public with the harsh realities of what’s done by blows to the head.
6. Stop isolating the different types of brain injury. Merge them all into a specialized brain injury care system in order to improve and streamline service delivery, and maximize savings to government.
7. Provide adequate financial assistance to disabled persons with a brain injury instead of the cruel cycle of legislated poverty currently imposed. When people are disabled, they are unable to do some things to help themselves. Expecting them to help themselves sets everyone up for failure. It’s inhumane to fiscally kick them when they’re down and force them onto the street to survive. They’re injured and need a hand up, not an inadequate handout.
8. Please quit making the people who help brain injured people in the community beg for money to be able to do so. Specialized community based non-profit brain injury organizations should never be forced to ‘hit the street hat-in-hand’ begging alms in order to be able to provide the critically important brain injury programs and services that government is responsible for – but fails to deliver.
9. Stop lumping brain injury in with spinal cord injury. Brain injury causes neuron trauma, while spinal cord injury causes nerve trauma. There’s a huge difference. Google it.
10. Require medically presented brain injury (of all intensity) data to be gathered by physicians, health centers and remote medical clinics and then compile it into a government brain injury data base.
11. Encourage all politicians to increase personal emotional sensitivity by learning more about brain injury and what they can do to be proactive in helping survivors, personally and professionally.
12. Establish specialized rural post acute care brain injury rehabilitative clinics to deliver services specific to the post acute care treatment of brain injuries at the community level.
13. Establish a voluntary vulnerable person registry that incorporates` the registry with emergency response systems (such as 911) to provide information relevant to crisis management. This has been proven to aid and empower law enforcement and emergency responders by providing critically important information about persons in crisis while in route.
14. Require all public officials to take sensitivity training regarding both brain injury and mental illness.
15. Stop making excuses for not taking immediate action to do more to help brain injured persons and their families. People with brain injuries are living lives of pain and suffering right this very minute. They deserve far better than a plethora of verbal facades and worthless platitudes.
Please take note that brains do not ‘rattle’ or ‘ring’ like a bell. ‘Shaking it off’ actually exasperates brain injury, and ‘concussion’ is medically sugar coated brain injury. Brain injury kills hundreds and disables thousands every single year, yet it’s treated and funded as if it’s some trivial healthcare concern. Brain injury is forever, but not all of its effects are. Healing is accelerated when provided with proper care.
Therefore, funding for post acute brain injury care services should never be made a matter of ‘budgetary consideration’, because the very second that it is, it facilitates budgetary inconsideration. Brain injury services need to be funded by law. There will always be excuses for not helping those living with a brain injury, such as the COVID crisis, but they remain mere excuses made by the mere minded. Its time for governments to stop their lame excuses; they’re insulting to the given and to the giver.
About the author:
W. Lewis was first brain injured as an infant by a violent step parent who punched him like he was a grown man, then repeatedly swung him by his legs, using his head to punch holes through drywall. Then, when 5 years old, he was the victim of a racially motivated assault that left him lying on the sidewalk to die. He subsequently suffered a very great deal of pain and confusion for decades, spending many years baffled and confused as his brain slowly healed. Lewis went on to work in the fields of community care and brain injury for over 40 years. In the process, he helped to form public policy and raise many millions of dollars to fund community non-profit brain injury organizations. He also wrote and produced a number of videos about brain injury. Now retired, he remains an active advocate for community based brain injury rehabilitative services at local and federal levels.