March: Brain Injury Awareness Month
Traumatic brain injury (TBI) has been defined as a signature wound of war. What many people don’t realize is that TBI is a leading cause of injury-related death and disability in the United States. In 2010, as many as 2.5 million people sustained a TBI resulting in emergency department (ED) visits, hospitalizations, or deaths 1. TBI doesn’t discriminate by age, race, sex, ethnicity or education. It can happen to anyone. Some groups may be at a higher risk of sustaining a TBI. That is the main reason why, when we discuss this topic, we tend to think of the military and veterans.
National data doesn’t include the approximate 357K TBIs reported among service members and veterans. This number sounds alarming, but even more alarming is the coexistence or comorbidities of other conditions resulting from the exposure to war, like posttraumatic stress (PTS) and chronic pain. Without proper rehabilitation, this cluster of conditions make it even worse for the person to perform well in their daily lives. This is the main reason why Victor and I are ardent advocates for the proper identification, diagnosis and rehabilitation of TBI. We have spoken and lectured about Victor’s disabilities, a situation presenting a scenario that seemed to blur a bright future. However, we never ceased to envision a bright future, despite all the prognosis. You may ask yourself, why we never ceased to envision a bright future? The answer is because we believe in hope, we have faith and because after all, my husband is a fighter and I knew it was in his DNA to continue to fight for his health. He described the process as “Owning my condition and beating the odds”. Is he cured? No, he is not. But because Victor received close to 3 years of rehabilitation, coupled with assistive devices and resources, he thrived in reaching his goals. And that my friends, is what we should aim towards for all our TBI community. Helping them achieve their goals whatever they may be. For Victor, it was independence, i.e., being able to drive and things on his own.
I have heard many times the phrase “No two TBIs are the same”, and that is true. What does that mean? For me as a caregiver it meant that we had to be proactive, creative and tenacious in 3 things:
1. Identifying the symptoms and associated conditions that emerged after the TBI. I kept a log with the frequency and duration of symptoms. This helped me identify the type of specialists we should be consulting and perhaps the tests that were needed to establish a post-injury baseline.
2. Accept that, although the injury is produced in the head, “It isn’t in the head” or more so, it is not a result of issues in the mind. Every symptom is real, as it is experienced by the loved one. Understanding that will help with building the loved ones’ confidence. I remember Victor asking me; “Is it in my head?” Why would he ask this? Because many times it can be confusing. I would ask Victor to describe his symptoms as much as he could and I annotated them. I didn’t make a big deal of the them. I listened and encouraged him to keep track of how he felt to increase awareness about the triggers (for example, what triggered the debilitating headaches or the worsening in speech or balance, etc.)
3. Actively engage in the creation and implementation of measures to provide adequate resources for the person with TBI and for yourself as the caregiver. I formulated a plan that included a rehabilitation team, assistive devices and home activities to reinforce and increase performance. To this day I am so happy we did, because Victor will take pride in saying that he does an amazing job doing the laundry. Now, 7 years later, many of these approaches became habits and these are in many ways responsible for Victor’s great advancement. Also, make sure that you have a plan as a caregiver to care for yourself. A car can’t run on empty. There are various organizations these days providing resources to improve one’s health and wellbeing. Make sure you take advantage of them. Education is key: engage in increasing your knowledge and education about TBI. Don’t make assumptions. I read the book from Dr. Richard Senelick, “Living with Brain Injury: A Guide for Patients and Their Families”. It was even better when we received a DVD that Victor and I could watch together. From then on, I immersed myself in the current literature. During our evening conversations, we discussed the topics as part of our family life. I should say, it was always from a very positive perspective. But the most important element is empowering the person to be the best version of themselves they can be and to help them strive to achieve their goals. Military culture is engrained in their system and leveraging from those attributes are the key to success. Be persistent in envisioning a brighter future. In the good days, celebrate. In the bad days, stay positive by changing the lens from where you are perceiving your circumstances. I always see my cup half full, because then I focus on what I have and not in what I don’t have. I then leverage from what we had to ensure a brighter and better future. Today, 7 years later, I am so glad we did. Life is not perfect but in a household where abundant love, joy, happiness, comfort and peace reign, we know God has blessed us with a beautiful and magnificent life. We wouldn’t trade it for anything in this world. Life is good and even better when we learn to count our precious blessings daily!
References:
1. Centers for Disease Control and Prevention. (2015). Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention. Atlanta, GA.
2. http://dvbic.dcoe.mil/files/tbi-numbers/DoD-TBI-Worldwide-Totals_2016_Q3_Nov-10-2016_v1.0_508_2016-12-27.pdf
I have heard many times the phrase “No two TBIs are the same”, and that is true. What does that mean? For me as a caregiver it meant that we had to be proactive, creative and tenacious in 3 things:
1. Identifying the symptoms and associated conditions that emerged after the TBI. I kept a log with the frequency and duration of symptoms. This helped me identify the type of specialists we should be consulting and perhaps the tests that were needed to establish a post-injury baseline.
2. Accept that, although the injury is produced in the head, “It isn’t in the head” or more so, it is not a result of issues in the mind. Every symptom is real, as it is experienced by the loved one. Understanding that will help with building the loved ones’ confidence. I remember Victor asking me; “Is it in my head?” Why would he ask this? Because many times it can be confusing. I would ask Victor to describe his symptoms as much as he could and I annotated them. I didn’t make a big deal of the them. I listened and encouraged him to keep track of how he felt to increase awareness about the triggers (for example, what triggered the debilitating headaches or the worsening in speech or balance, etc.)
3. Actively engage in the creation and implementation of measures to provide adequate resources for the person with TBI and for yourself as the caregiver. I formulated a plan that included a rehabilitation team, assistive devices and home activities to reinforce and increase performance. To this day I am so happy we did, because Victor will take pride in saying that he does an amazing job doing the laundry. Now, 7 years later, many of these approaches became habits and these are in many ways responsible for Victor’s great advancement. Also, make sure that you have a plan as a caregiver to care for yourself. A car can’t run on empty. There are various organizations these days providing resources to improve one’s health and wellbeing. Make sure you take advantage of them. Education is key: engage in increasing your knowledge and education about TBI. Don’t make assumptions. I read the book from Dr. Richard Senelick, “Living with Brain Injury: A Guide for Patients and Their Families”. It was even better when we received a DVD that Victor and I could watch together. From then on, I immersed myself in the current literature. During our evening conversations, we discussed the topics as part of our family life. I should say, it was always from a very positive perspective. But the most important element is empowering the person to be the best version of themselves they can be and to help them strive to achieve their goals. Military culture is engrained in their system and leveraging from those attributes are the key to success. Be persistent in envisioning a brighter future. In the good days, celebrate. In the bad days, stay positive by changing the lens from where you are perceiving your circumstances. I always see my cup half full, because then I focus on what I have and not in what I don’t have. I then leverage from what we had to ensure a brighter and better future. Today, 7 years later, I am so glad we did. Life is not perfect but in a household where abundant love, joy, happiness, comfort and peace reign, we know God has blessed us with a beautiful and magnificent life. We wouldn’t trade it for anything in this world. Life is good and even better when we learn to count our precious blessings daily!
References:
1. Centers for Disease Control and Prevention. (2015). Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention. Atlanta, GA.
2. http://dvbic.dcoe.mil/files/tbi-numbers/DoD-TBI-Worldwide-Totals_2016_Q3_Nov-10-2016_v1.0_508_2016-12-27.pdf
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