It has been over nine years since I was sent home to heal my brain injury alone. Armed with two sheets of printed instructions and my scrambled egg brains, I was on my own.
I had many challenges and was grateful every day that I had the fortitude and focus that allowed me to adjust my sails to meet the shifting headwinds of the negative change that had occurred. Deciding to focus on the positive and consumed with possibilities, I thought it was possible to get better despite prevailing medical opinions. I would find the way.
I have done that…almost. You see, I have been able to help others, and yet there has been little help for me. I guess I’m leading the way. I would like you to know that I am looking for a great job that allows me the ability to support myself. I do not need millions, although I would enjoy the opportunity to use resources like that to improve the world.
At this point, I hope it is not difficult to imagine that all is not well in the realm of Brain Injury Recovery. There are currently approximately 20,000 neurologists in the USA which is hardly enough. Add in the fact that most doctors were not trained in brain injury recovery, and we have a sad situation. There are improvements needed in every imaginable way.
Until this is understood, and actions are taken to collect and combine all possible data, (which AI is very good at doing), many brain-injured people will remain sitting on the edge of society waiting longingly to get back in the game. We need more people attending to the problem. Too many isolated cells are working not sharing what they know to be of help. Solutions must be collected and quantified.
This “invisible injury” is not only debilitating but it is dangerous. Families are negatively affected, and many are destroyed. Its ripple effect can take hold and become a tsunami of shared bad experiences; misaligned actions based on erroneous assumptions often produce broken nonproductive people. There are millions of them.
With the current economic challenges and demographic shifts towards an aging population, adults who live alone managing brain injuries, face unique and carelessly unaddressed obstacles with their recovery. Hence the term “invisible”. These are formidable. I know. I was sent home from the hospital with a whiplash that morphed into a Traumatic Brain Injury within a few days. I am currently without a home to call my own. The crazy decision was made to sell it despite no follow-up plan. The monies gained in the sale were inappropriately sent on exorbitant rents due to the Covid crisis. The money ran out. Despite my being on a low-income housing list for years now. What used to be a 6-month to a 2-year wait is now 8 years. There is limited inventory and people are coming from all over the world to live here.
As you can imagine, there is little room to accommodate the people who can advocate for themselves. Think about those who can’t. Little has been done to address the circumstances of this demographic It’s time we identified and underscored the problems within the societal system that have mushroomed by ignoring the needs of those who live alone, especially those who are older.
Unsound economic decisions resulting in catastrophic consequences are made by those left to fend for themselves Think about it. They have jobs, own property, and responsibilities that can easily become tremendous burdens when they are unable to think or walk straight let alone work. Bills pile up. Credit scores are affected. Those who can’t work begin the arduous task of “proving” that they are disabled. Monies are delayed or never realized. These people need targeted intervention and support.
The seriousness of money management skills disappearing along with their brain’s abilities requires that advocates be assigned immediately. When diagnosed. These should not be people affiliated with the business the person worked for. Being sent home to heal alone and manage everyday living responsibilities is negligent. Doctors do not send those with a broken arm or leg home without a cast, crutches, or a sling.
When someone can’t think, and most brain-injured people have this problem, it’s reprehensible to assume that they will be able to manage their affairs. They need time for their brains to adjust to their injury’s consequences. That can only happen when one is stress-free. They require rest. Assistance from someone who can attend to details that they are not capable of is liberating. They will come around. They just need a chance to breathe and heal.
Current Challenges Over the past two decades, the Consumer Price Index has shown significant increases, impacting essential expenses such as housing, food, and medical care. Rising health insurance premiums strain fixed incomes, exacerbating financial insecurity. Moreover, the modern job market’s shift towards digital skills and remote work poses formidable barriers for workers, compounded by pervasive age discrimination in employment practices. Throw this on top of the challenges of an unidentified, unassisted brain-injured person, and this is a recipe for a disastrous future. It is not uncommon for the only one who truly understands this calamity currently to be the one with the injury.
An unidentified brain-injured person faces insurmountable challenges when there is little understanding or help. You see, not many doctors are trained in brain injury recovery. Ask one. It is these things and much more that have driven me to write books, craft articles, and coach people. Now, there are those who after seeing many doctors, are turning to me for help. I need some help myself, but I can’t afford to wait. I will continue to embrace the possibilities and speak up.
Once again, I do not think I am a doctor, but we do need them to get a lot more serious and educated about this problem. It is multifaceted and certainly not a one-stop treatment solution. Coaches who understand this aspect are needed.
Social isolation has been linked to heightened risks of mental and physical health decline, including increased mortality rates and cognitive impairments. It’s terrible. Socially, many of this demographic experience profound isolation. Millions of these individuals are now without jobs and the ability to keep up with their financial obligations. They are constantly redoing things that they would never be doing if it were not for the cognitive challenges created by an inability to think clearly.
“If you spend all your day treading water, you will never reach the shore.” — Gail Waitkun
Unaddressed Symptoms and Communication Challenges A critical yet often unaddressed issue among brain injury survivors is the difficulty in expressing themselves effectively due to cognitive impairments. Expressions emanating in “fits and starts, stutters, and slurs create enormous problems. Perceived as dramatics by others and actual inaccuracy in speech create a communication style that is often not believed.
I often thought “Don’t shoot the messenger”, when I read the facial expression of the person I was anxiously speaking with. Less than eloquent speech delivery does not elicit another’s rapt attention or patience. The right words are impossible to find. (I know that I appeared to look and act perfectly normal except when I stuttered.) Often, it’s only when the brain injured speaks, that some things appear “off”. Concussions and other brain injuries can impede cognitive functions such as memory, reasoning, and communication skills. This impairment not only hinders the ability to articulate needs and challenges but also affects credibility in conveying the precise severity of their symptoms to healthcare providers, family members, and friends. We look crazy. We don’t sound credible. That’s why I designed the Concussion Conversation Tracker.
Challenges in Understanding and Support Moreover, family members and friends may struggle to acknowledge and understand the long-term impacts of brain injuries on cognitive abilities. Months or years post-injury an individual may still have significant unseen challenges. Observing an adult who once managed tasks independently and is now struggling with something that once was very simple, such as managing finances or recalling daily routines, can be beyond disconcerting for those who want to help. It’s alarming, worrisome and often creates family friction.
It is normal for us to expect self-sufficiency in our fellow adults. (The words” smugness “and “abandonment “come to mind.) Most feel helpless when faced with cognitive impairments they cannot easily understand. This often results in a brain-injured loved one purposefully withdrawing from them because they feel entirely helpless. The opposite also occurs. The brain-injured person is subjected to additional stress when frequently attacked by those who they look to for support. Impatient harsh criticisms are not uncommon.
They are told to go get a job. Often, because of other unseen symptoms, this is not yet possible. These misunderstandings are frequent and result in angry conversations. People withdraw to their corners. Family tensions mount. Stress hinders healing. It keeps our bodies in a constant state of inflammation. Little progress occurs as people tend to hold firm to their beliefs. For the brain injured, it’s the constant mantra “I am brain injured and therefore can’t do …”. For those standing on the outside looking in, the seeming normal appearance reinforces a belief that the person with the injury is simply lazy. There is plenty to be done.
Impact on Isolation and Neglect This lack of understanding and support leads to underestimation or dismissal of the brain-injured’s symptoms and needs. Consequently, they may experience heightened feelings of isolation and neglect, compounding the physical challenges they already face due to their injury. This then snowballs manifesting in a true state of helplessness. Without a fierce mindset, they falter.
Social interactions may diminish as friends and family members withdraw, contributing to the downward spiral. All of this results in a lack of interest in improving oneself. It’s incredibly difficult. You can see yourself doing and saying things you know are not right. It’s beyond discouraging. “Overwhelmed” comes to mind. I was once there. This does not bode well for improvement to take place in a timely fashion. When this occurs, and it does over and over without proper attention, society is down one good player.
Proposal: Establishing Change The time has come to address these multifaceted challenges. There needs to be the establishment of a dedicated outreach program aimed at identifying and supporting brain injury survivors. Many were highly functioning in every aspect of life and contributing members of their communities. They own businesses, have jobs, and are leaders of families or groups They have grandchildren that they are looking forward to enjoying. They were at the very least, before their diagnosis, living a life that was without these obstacles.
Now, many are living alone with these dire needs unmet. As they are not recognized by traditional support networks the time has come to make big changes in how we look at this entire problem.
Here are just a few of my suggestions. There will be more to come. I hope you have made it thus far dear reader and I thank you for your attention. We need an army of you.
Identification and Outreach: Collaboration between healthcare providers, social services, and community organizations to create a comprehensive database. Utilize AI technology and enable community networks to locate and reach isolated individuals.Comprehensive Assessments: Conduct thorough assessments beginning in the hospital emergency department to identify, and document everyone’s health, financial stability, and social needs. No one who lives alone should be sent home to take care of themselves. Personalized care plans created with the help of AI to address identified challenges must be in place. These plans must take into consideration the former lifestyle of the individual in front of them. This is not a time for a “one size fits all” solution.Resource Coordination and Navigation: Establish a centralized resource hub to connect individuals with essential services such as qualified healthcare practitioners who specialize in brain injury recovery, financial help, legal aid, and counseling. There must be advocates assigned who are familiar with brain injuries (preference for those who have direct knowledge or have been taught by someone who soundly knows the problems and possible solutions). Guiding in navigating complex systems like insurance plans, Disability, Workman’s Comp, Medicare, and Social Security is a must.Community Integration: Promoting community support networks through local events, support groups, and social activities is important for encouraging engagement to reduce isolation and enhance overall well-being. These groups’ foundations must consist of high-quality interactions with people who are not brain injured. “A man’s reach should exceed his grasp” …
Advocacy and Education: Advocating for policy changes to increase funding for unique brain injury programs that recognize that “one size does not fit all” and raise awareness about the special needs of older adults with brain injuries must be implemented. Educating the public and healthcare professionals and encouraging them to seek further education and improve their skills and subsequent effectiveness when treating those needing guidance, understanding, and support will require a separate division. Did you realize that most neurologists and medical doctors were not taught anything about brain injury recovery? When Dr. Shaunna Menard told me that I was the expert because she knew nothing and I knew more because I was going through it, it startled me and affected a shift in my entire mindset. Belief is a strong motivator. Who knows what might have happened otherwise to those I have since helped? The possibilities are discouraging and, in one instance frightening.
These roughly designed proposals are essential in addressing the hidden and unmet needs of brain injury survivors living alone. They are just a beginning, and we must begin now.
In identifying and supporting these individuals and assuring them that they will receive the necessary care and support they deserve with tailored interventions and community resources, there is hope for a significant improvement in their quality of life.
Collaboration with existing organizations, leveraging technological advancements, and fostering community engagement are crucial steps toward achieving these goals.
There is a great deal more to be said but it would be a fine idea to start this conversation by writing this today. As my coach Francie the CEO of the JT Foxx Organization and one of my coaches, has said more than once: “Done is better than perfect”. That thought was instrumental in influencing me to act. It permitted me to fail. Those actions proved to be valuable steps in the idea development continuum.
I will forge ahead and do my best to present things in my imperfect way as it all needs to be known and hopefully acted upon soon. Many people, families, and communities depend on it. This is something that I have resisted writing about for fear that I am “acting like a victim”. I now know that I must speak up. As Andy Henriquez has said many times to those he coaches in Storytelling: “It’s your obligation to share what you know.” There are people out there waiting for this information. Many depend upon my stepping out of the shadows. We need better solutions now. I am willing to share what I know. How can you help?
References
U.S. Census Bureau. “An Aging Nation: The Older Population in the United States.” 2018.
Centers for Disease Control and Prevention (CDC). “Traumatic Brain Injury & Concussion: Data & Statistics
AARP. “Age Discrimination in the Workplace.” 2023.
U.S. Bureau of Labor Statistics. “Consumer Price Index – December 2020.”
Kaiser Family Foundation. “2020 Employer Health Benefits Survey.”
For help in keeping track of symptoms so better healing can take hold: https://amzn.to/3Tpd2b9
For more information on the “invisible injury:” and steps to take towards solutions: https://amzn.to/3gb8Hok .
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