BY: A NURSE-CAREGIVER OF A YOUNG PERSON WITH A BRAIN INJURY
BY: A NURSE-CAREGIVER OF A YOUNG PERSON WITH A BRAIN INJURY
BY: ALANA TIBBLES
Sports injuries are often the first thing that comes to mind when people think about brain injury. A close second, motor vehicle collisions.
As a brain injury researcher, I am ashamed to say I hadn’t considered another population of people which are at high risk of a brain injury: those who have experienced intimate partner violence (IPV).
It wasn’t until the Brain Injury Canada conference in September 2016 that I started to hear about research relating to women who had experienced brain injuries as a result of IPV.
I’d like to take a moment here to note that persons of any gender may be either perpetrators of or victims of IPV. The majority of the studies I will be summarizing are regarding female survivors of IPV perpetrated by males. As more research becomes available we may gain further insight into other relationship dynamics.
Anyone who has experienced injuries to the head and/or neck (including being shaken), should be assessed for a brain injury.
This includes people who have experienced strangulation, since brain injury can occur from lack of oxygen to the brain. People who are living with brain injury are at an increased risk of depression or anxiety and tend to experience frequent headaches, fatigue and dizziness. Many experience cognitive issues such as impaired memory and concentration as well as difficulty planning and making decisions.
Understanding these symptoms are the effects of the brain injury, and getting help dealing with them, may help a survivor make decisions regarding their living situation and plan to gain independence from a violent partner. It may also validate their experiences, knowing there are real health issues going on, and they are not ‘just making things up.’
The good news is that research is starting to focus specifically on how females recover from brain injuries and how brain injuries from IPV and other forms of assault may be different from those sustained in other ways (such as a car accident).
As such, survivors of IPV who have sustained a brain injury (and feel they are able to so) may wish to participate in research in order to help further our findings with the goal of increasing the information base for other survivors.
Social isolation and loss of relationships are too common after brain injury, and those who have strong social support networks in place post ABI are more likely to have better outcomes than those who do not.
A reliable support system may be even more important for women with a brain injury as the result of intimate partner violence. Not only will they be dealing with the effects of a brain injury, but they may be leaving a violent partner, and / or dealing with the emotional and psychological impacts of having survived intimate partner violence.
Women may require financial support, legal information and a safe place to stay (with their children, if applicable) and temporary or ongoing caregiving.
While it is important to screen for brain injuries from IPV, it is complicated by issues regarding how safe a patient feels disclosing IPV. Some patients may fear retaliation if their partner finds out they’ve talked about the abuse and some may fear for the safety and custody of their children.
Survivors of brain injury from assault (including IPV) are much more likely to suffer from post-traumatic stress disorder (PTSD) and often have lasting psychological trauma. There is now an ongoing research project with the aim of introducing a toolkit for frontline workers serving women with IPV, to improve the experiences of both the women and the workers when discussing and addressing this sensitive topic.
Research findings from other studies often help direct future research. I would caution that while past studies can be helpful, the literature may be missing more than we realize when it comes to survivors of IPV, for the following reasons.
Some survivors may choose not to participate in research or discuss their experiences. Depending on how risky they feel disclosing the IPV may be, survivors may not be seeking out medical assistance after injuries or they may not be forthcoming with details about how it happened.
Loss of follow-ups
If survivors seek medical attention, they may not return for follow-ups depending on whether or not they are trying to avoid alerting their partner about their medical visits.
Lack of details about injury
Unlike traumatic brain injuries from sports injuries or vehicular accidents where there are witnesses or first responders to provide information about the incident, survivors of IPV may have to rely solely on their own memories of the event (which can be difficult for anyone with a brain injury). They may not know how long they were unconscious or how many blows to the head they have sustained. Having accurate details about an injury can be helpful for research, especially when it comes to understanding post-injury recovery patterns and outcomes. While definitely not the fault of the survivor, having missing data may make it difficult to reach conclusions about the recovery of this population.
Incomplete representation of population
A study by the World Health Organization (WHO) found there are different societal standards for what constitutes IPV in countries where women have fewer rights. Therefore IPV may be underreported in other cultures or countries where males are viewed as having the right to punish their wives. Ideally there should also be more representation in the research from other relationship dynamics, such as those with trans partners, same-sex relationships, relationships where the female is the perpetrator and the male is the victim and relationships where both partners are violent.
Now, this is not to discount the value of research being done in this area. It is a historically under-represented group in the brain injury literature and researchers are now making great strides to shed light on how brain injury may differ for this population. It is hopeful that with continued research, we can tailor rehabilitation and support for this group with the aim of improving their recovery and quality of life.
Alana is a researcher who recently completed her Master of Science degree at the Rehabilitation Sciences Institute at University of Toronto. She has been studying brain injury for several years in topics including but not limited to: substance misuse, recovery, neurofeedback, sleep, and hospital-to-school transitions. Her aim for her blog posts is to continue to learn about and promote learning about brain injury research, hopefully making it easier for interested persons (brain injury survivors, caregivers, loved ones, clinicians etc.) to access relevant information.
BY: MARK KONING
In 1978, when I was six years of age, I was admitted to the hospital with a viral brain infection, known as encephalitis. Encephalitis is inflammation of the brain, caused either by an infection invading the brain (infectious) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).
It was a seizure that alerted my parents to the fact that we needed to take a trip to the hospital, and then another seizure which told the doctors I needed to be admitted. After this, I draw a few blanks. There were many tests, I was in a coma for two weeks, and I received rehabilitation during the course of my stay at this medical facility that acted as my home for the following months. While there was some therapy that I continued to endure for another little bit after I went home, that was it, I was done.
Fast forward 23 years later to 2001 when my mom had an accident and fell, and I see a world of change. After my mom was placed onto a gurney in the hospital, it took only a matter of hours to diagnose the subdermal hematoma/blood clot that my mom had suffered. They first had looked into whether or not it was a stroke which had caused the fall, followed by tests for an aneurism. Turns out it was just a plain old, bad, fall.
My mom went into surgery that night and found herself sleeping in a coma for the next month. When she awoke, it took her quite a while to find the mobility to physically move her limbs, and it took even longer for her to find her voice. A physical therapist helped with her movement, a speech therapist helped with her aphasia and a cognitive therapist helped with everything else. The nurses were great and the doctors took good care to explain things that my sister and I needed to know. My mom was prescribed the appropriate medications to ease any discomforts. Therapy followed us home and soon the Community Care Access Centre (CCAC) got my mom, among other services, a personal support worker.
Currently my mom attends an aphasia program once a week, an ABI program once a week and has a March of Dimes rehabilitation worker come out once a week. She also involves herself in many social activities March of Dimes offers. And her doctors, even though different from years ago in the hospital, treat her very well.
There is quite a bit of difference between our injuries. I was pretty young when I acquired my brain injury, while my mom was just approaching her 60th birthday when she fell. (Though she would say 49 and holding.) And as much as I don’t want to seem ungrateful for the care I received, I can’t believe the tremendous difference compared to what my mother has access to compared to what I had, back in 1978.
Times have changed and regardless of my occasional questioning about my past, I have no complaints about change when it is for the better.
The one main difference between my mom’s accident and mine is traumatic brain injury (TBI) versus acquired brain injury (ABI). My mom fell and suffered a TBI where as I was struck with a viral infection from within; no trauma, no physically-seen damage, no bleeding from the head. Does make a difference? I wonder.
To find out more about my life growing up you can do so by reading my book Challenging Barriers & Walking the Path, found here: http://www.markkoning.com/ChallengingBarriers.html
Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com.
People are wondering, ‘Can he speak? Does he have 100 per cent mental capacity?’ The truth is, I never did. I might even be a few points higher.
The things we find humorous are inconsistent and strange. Perhaps this is no better illustrated then by Tracy Morgan’s opening joke as he took to the Saturday Night Live (SNL) stage last weekend.
In his anticipated return to the SNL show just over a year since a near fatal car crash left him with a traumatic brain injury, Morgan’s opening monologue started off by looking as though he lost his speech. (Is it less funny when we find a person acting like they have ‘half-a-brain’ because they actually have a brain injury? Where as before, it was funny to see a ‘full-brained’ person act like they have ‘half-a-brain?’ A curious riddle.)
Morgan truncated that bit shortly and moved on to gratitude – a very warm thank you to his comedy family of 30 Rock co-stars Tina Fey, Alec Baldwin, Jane Krakowski and Jack McBrayer, and nodding towards the gravity of the car crash that nearly took his life.
In his past work, a pleasure of Morgan was the randomness of his person. He would be so still in the scene then issue forth with comic random hilarity, often times playing the simpleton who triumphs in the end.
Last Saturday, we saw Morgan doing some of his established characters that helped him reach his fame, including Brian Fellow and Astronaut Jones. In some numbers his eyes were reeling to keep up and we wonder if he seems to grasp just the coattail of the scene.
Yet in other numbers he sinks so deeply into character he all but disappears and delights us in his transformation. In the Safari Planet sketch, an un-cooperative camel took up the whole camera view, only to be taken off smoothly by Morgan in Brian Fellow character – hats off to him for cognitive flexibility!
Perhaps Morgan has gotten a peak from the front row seats of his own personal apocalypse, as so many brain injury survivors have. But the unraveling of our person, and the memory of that view is nursed and subdued with laughter. Humour is the nursemaid of terror, and it is heartening to see people who call in our laughs benefit from the same medicine.
This is not about whether Morgan has recovered or not. Many us living with brain injury know recovery is never judged by one thing, and the success we had before may not be the same ones in store for us tomorrow. It is the effort to continue reaching for what we desire and working with what we have.
Tracy Morgan impressed and pleased me, working and striving to reach what he has reached. He stood up there with his quintessential Tracey Morgan style comedy and made me laugh. The ratings that night went through the roof. More importantly, he cracked me up.
Coire Langham had brain surgery just over a year ago. On his good days he remembers that a new world is out there to explore. On his really good days, he forgets the world entirely and plays make believe with his three-year-old daughter outside in the sun.
BY: SABA RIZVI
I think the hardest thing since acquiring my brain injury has been the inability to perform basic functions, such as reading, talking, walking, and just even being able to eat.
Even now, several years later, these functions still feel like a luxury.
Living with brain injury is usually an invisible disability. People may tell you to ‘try harder’, ‘not be lazy’, or that ‘you look fine, stop telling yourself there’s something wrong’. These people don’t understand that an ABI survivor’s best bet to recovery is putting their best foot forward, regardless of how they’re really feeling.
Ironically though, if you do try to live a normal life, these people will tell you that you are fine and they don’t believe that something is wrong. But when you are in such a bad state that you can’t get of the house, these same people will tell you to suck it up and stop being a baby. So, since I acquired my TBI, I appreciate those who have accepted the new reality as much as possible – the ones who have been patient.
Even something as little as needing space or not being upset if I need help reading, or if I just have the energy to stay home and watch TV are a big help to recovery. I also appreciate those who are not understanding, because it gives a more clear understanding of who you can trust or who is actually listening.
Saba acquired her brain injury in 2010, and is interested in TBI awareness and advocacy.