As the days go by I am ok, the best I can be given the situation. But when the night comes, it’s a different story. The feeling of loneliness sets in, and without knowing it, tears start rolling down my face. I can’t find the off-switch.
I keep wanting to wake up from this nightmare, but it’s our reality. For over seven years, this has been my new normal. I find myself planning my life and his at the same time. It’s really scary knowing that I have to make decisions about my husband’s health.
I have learned how to drive a mobile van and how to secure Norm in place in his wheelchair. We go to the movies, dinner and to Toronto to check out places like the Hockey Hall of Fame. I am trying to give Norm a normal life even though I know he won’t get any better.
It feels like I have put my life on the back burner and become a full time caregiver.
I’ve gone back to school and took a Personal Support Worker course to get insight to help Norm in his new life. I have taken training courses through the Ontario Brain Injury Association (OBIA), which have helped.
I am becoming more involved in Norm’s therapy. I assist Norm’s therapist with his treatment, such as assisting him in the therapy pool as he walks from one length of the pool to the other.
But I keep wondering what happened to the golden years we worked so hard to enjoy? How am I supposed be a loving wife when I am living on my own?
After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE
I have two recurring nightmares. In the first one, I’m on a basketball court and I am 16-years-old again. I’m playing my old point guard position. I am scared and dribbling the ball cautiously because I am not supposed to be here but my coach put me in the game. I’ve never dreamed long enough to find out if I make it through.
In my second dream, I’m on a rollercoaster at a theme park I visited often as a kid except I’m my 26-year-old self. I know it’s not safe for me to be there and I’m scared of how I will come out at the end of the ride. In this dream as well, I never dream long enough to find out.
It’s taken me years to realize my dreams are reoccurring. I understand now they are related to the part of brain injury I don’t like to talk about: how my brain injury impacts my mental and emotional health, how the act of being injured in itself is traumatic.
After a traumatic event, it’s common to have nightmares about the specific event or the circumstances surrounding the event. My dreams make sense, they are the manifestations of the trauma in traumatic brain injury.
My initial brain injury occurred during a basketball game. In the basketball dream, I’m the same age, playing the same position and in the same gym where I acquired my injury. I have the same coach who encouraged me to play despite having a brain injury. I know I shouldn’t be on the court and I’m afraid someone is going to hit me with their body or the ball, but part of me is happy to be there.
Despite my brain injury, I sometimes test the waters with new and old activities such as riding a bike, zip-lining and jumping rock to rock while hiking. Sometimes I do things I know I shouldn’t, such as not wearing a helmet while biking or rollerblading. Despite my willingness to test the waters and tempt fate, I would never try to go on a rollercoaster again. This is a former love that would likely cause significant damage to my brain and potentially kill me. It makes sense I have nightmares about being on rollercoasters.
After living with brain injury for ten years, I am still learning new things. This week, I learned I have recurring nightmares from the traumatic event that was my TBI.
Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.
A brain injury can come with a variety of symptoms, from visual disturbances to changes in personality.
I have a diffuse axonal injury – a fancy term for damage to tissue in multiple regions of the brain – and the most significant symptom that comes with such a fancy term is fatigue.
When fatigue is present at all hours of the day, down time is precious. I work full-time, and anything beyond that requires a lot of thought, caffeine and an understanding that I need to be in bed by 9 p.m.
Unlike other symptoms of brain injury, fatigue is predictable: if I’m not at work, I’m probably at home. I may leave the house for a few hours on a weekend, or not at all.
My friends often ask what I do when I stay home, how can I stay occupied for all of those hours?
My days at home start with the relaxation essentials: my diffuser and candles. Trust me, whether you want to feel relaxed, energized, renewed, happy or sleepy, there is an essential oil and candle for that. I take an opportunity to stay at home as one to take care of my body and feel good. This means alternating between sipping tea and water while I light up the diffuser and candles.
The reason I stay home is two-fold; I’m staying home because I’m exhausted and I’m staying home because I need to rest up for the week ahead. The more brain injury symptoms I’m having, the more likely I am to be on my couch.
While I spend some time watching movies and television, I can’t sit for hours doing this. My favourite activity when Netflix is off is reading. I usually have a lot of books on the go depending on my mood, including crime books, academic reads and something light, like Mindy Khaling. My other favourite activity is Sudoku, the extreme sport of the brain-injured. (On a side note: if you have any unused Sudoku’s from your newspaper, let me know!)
This down time has also given me more time to write. Beyond the BIST Blog, I also write for The Mighty and have contributed a personal essay to a feminist comedy book coming out in the summer.
Since I moved into a one-bedroom apartment and got an adult job, I have become obsessed with decorating (and redecorating) my apartment. I have decided that if I’m going to be spending so much time at home due to my disability, I’m going to make my home beautiful. I’m a big fan of fake plants as they are self-sustaining and do not care that I am a bad plant mom.
This may sound boring to the able-bodied as there are plenty more interesting things that one could be doing with their weekend. As a person with a disability, this works for me and ensures I’m able to show up for who and where I’m most needed.
Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.
Although I usually post recipes I thought June being Brain Injury Awareness Month, I would talk about how I got here.
Back in 1991, when I was just 40-years-old (yes, you can do the math), I suffered a massive brain aneurysm. I am now turning 67 and even now when I speak to stroke survivors, I still get emotional. I was a healthy ski instructor, never smoked, did not take birth control nor had high blood pressure. I was bodybuilding with heavy weights and teaching skiing at least twice a week. So the bonus was, I was in great shape.
What I did not realize was that my mother had the same type of stroke at 37-years-old. Being Irish, she kept talking about the time she had the ‘spell’. My sister also had a TIA, a mini stroke, at 42 so definitely we were predisposed. This is another contributory factor, the hereditary card.
For the two months prior to my stroke I worked in a new job that I was struggling with that included a lot of travelling, driving and working all kinds of hours. I was single and dating so probably exceeding the number of drinks I should be having. I had a constant migraine, which sometimes I would think that I was just tired and I would ‘catch up’ on the weekend. I never consulted with a physician and later on, when I returned to work, realized I was self medicating.
Easter weekend I was teaching skiing at Mont Tremblant and had a migraine so severe I was vomiting throughout the night. In the morning I felt so tired and still nauseous. I tell people later the sensation of trying to move and I felt like I was literally was underwater.
Everything was an effort and my limbs wouldn’t respond. I finally made it to the chairlift but when I sat back, my head felt like it exploded. Fortunately for me the staff there are trained EMS services so got me into an ambulance where I was rushed into Montreal Neurological Institute, a leading research facility where I was diagnosed with having a stroke and treated quickly. That is the only reason I survived.
In hindsight, all the signs were there but like most people, particularly women, I chose to ignore them.
I thought I was overtired, stressed from work and lack of sleep. Well of course I was. Not realizing that expression, stress kills, is actually true! What I did learn, the hard way, is to know your own body and be kind to yourself.
Be aware of the risk factors: oral contraceptives, smoking, obesity, high blood pressure, family history, high alcohol use and stress. Most women have very high expectations of ourselves and even though they are exhausted think that they will “catch up” on the weekend. Well you know the drill, you have to be the driver, the cook, the therapist, model wife, and housekeeper and lo and behold the weekend flew by and you are still tired!
Now women have more strokes than men and heart disease in general is hard to diagnose in women we have totally different systems than men. The prognosis is much better for recovery with new drugs available, more research and 10 centres for Stroke Prevention in Ontario.
After suffering a stroke at the age of 40, Janet left the corporate world to open a personal chef business, Satisfied Soul Inc. Now retired, she continues to enjoy her passions of cooking, creating and teaching people how to eat properly.
Meet Abby Schnurr Mongkonrob, winner of our Volunteer of the Year, Survivor / Thriver Category!
Abby is someone who is always willing to help out with anything and everything we need, from being an amazing photographer at our 2017 5K Run, Walk or Roll to co-curating our Expressive Art Show for the past two years. When she’s in the office or at a program, you know she’ll lifting the spirits in the room by cracking jokes or offering an empathetic ear to anyone who could use it.
Congrats Abby – it’s volunteers like you who help make BIST strong!
16 things you don’t know about me in 16 words or less: I’m a teacher, TV actor, digital music producer, artist, photographer, graphic designer – the list goes on!
I was brought up with good family values: treat everyone equally, respectfully and kindly. I instilled these things in my students as a teacher and this is what I act now as a TBI Survivor and volunteer.
The reason I began volunteering for BIST was: the group of ladies [on staff at BIST] gave me hope. Hope and meaning like I mattered. I didn’t quite understand my TBI for the longest time. Being around others around who shared the same experience urged me to help them while I was also unexpectedly helping myself in the process.
I found support with BIST but also enjoyed engaging with other survivors through their outings and activities, especially the creative arts which I guess is the teacher side of me coming out. My old self resurfaces once in a while when I am with BIST and that is a good feeling.
If I could pick any job in the world, I would be: A well-known actor, but not famous. Just well-known. I don’t like the spotlight on me, I like to choose when to be in the spotlight. Also music producing is something I’d like to get in to.
I have an (irrational or otherwise) fear of:not being in control. Being alone. Death, I think about it every day. Not being able to control my suicidal ideations, which are part of my TBI linked with mental health struggles.
I don’t like snakes but I really like spiders.
My greatest assets as a volunteer are:I’ve been told I’m funny and quirky. Effective communication with other TBI survivors, patient, friendly and helpful. I feel the need to help to take care of them, it’s the teacher in me.
My friends would describe me as:Quirky, a big kid, funny, kind and unpredictable.
If I could invent a super power, it would be:to record our dreams and watch them on TV. Maybe they already have that. LOL. But it’s pretty cool anyways. You can learn a lot about yourself in your subconscious existence.
What inspires me most about BIST is: taking part in the events and feeling appreciated and needed.
If I won $1 million dollars I would: keep it for myself! Give some money to my family, because my parents are always there and so is my sister, no matter what. I would buy my husband and myself a food truck because my husband wants to sell Thai food. I would open a tranquil coffee shop. I would try and help the homeless because I know how to feels to be in poverty.
My personal hero is: any child or adult survivor of an injury, addiction, abuse, mental health, illness or disease that they have conquered or are in the process of conquering.
My celebrity “crush” is: David Tennant, I think he’s brilliant. I also like Chris Pratt and Noami Watts.
My favourite BIST event is: going to the movies! And the yearly art show, this is my second year co-curating.
A quote/motto I try to live by is: treat others as you would like to be treated – Karma!
If I could volunteer anywhere in the world I would:volunteer for Make a Wish Foundation, go to Disney World with the kids.
One time, as a kid, I: had a radio show in my basement with friends and cassette tapes, the good old days. I won a spot on a 107.9 morning show with Anwar Night and Larry Silver when I was in grade six. Anwar Night was cute, he’s a weather guy now.
I am most proud of: my husband, for moving all the way from Thailand to support me and take care of me.
My favourite BIST moment from this past year is: when Spider Man came to High Park on picinic day – I felt like a big kid!
I remember the last thing we did as a family. A week before everything happened we celebrated Eid Al-Fitr.
For those of you who are not aware, Eid is a Muslim festival that happens twice a year where we get together with family and friends, and share a big meal. Both Eids have distinct connotations. In particular, Eid Al-Fitr represents the celebration of 30-days of fasting known as the month of Ramadan. Eid is one of the happiest days of the year and to top it off, that Eid occurred on a hot summer day.
My family has nine children, and a total of 11 people, so traveling together is always challenging. That day, for the first time in a while, we all went out together. It was an amazing experience, one that we spoke of for days after.
I’ll never forget the way I felt when I first heard the news about my brother. I can vividly recall it as if it were yesterday. The same couple of moments and memories consistently flood my mind, and even though it has been over three years since it happened, I think about it every single day because it completely affected and changed all aspects of my life.
I can remember seeing him leave the house, and every time I closed my eyes I saw my brother’s face at the forefront of my mind. I can speak for everyone in my family when I say that my brother’s traumatic brain injury changed our lives because it affected every aspect of our daily living. Having said that, I always felt like it affected me the most.
Because of who I am as a person, and the role I play in my family dynamics, I spent every day at the hospital for two and a half years while my brother received care. I saw things I can never un-see. My time at the hospital changed every aspect of my life, and how I perceive the world.
With so many siblings in my family, naturally, some of us are closer than others. My brother and I were, and are, very close. We told each other everything, and we always trusted one another. All of that factored into how much it really impacted my life, emotions, and day-to day-thinking.
Imagine one day you woke up in a hospital bed not able to do many or most of things that you were once able to do. How would you feel? Now imagine knowing that what happened to you was the result of a violent assault. These thoughts never left my head and I would constantly put myself in his shoes and think, “How would I feel if this were me?”
The doctors said my brother had an extremely poor outlook, and a slim to none chance of a meaningful recovery. These were the exact words that were used. It seemed as though everyone was treating him like he would not have a future, I never took that to heart. I could not give up hope.
There was and is still not a lot known about the brain. During this time, nothing else mattered but making sure my brother was doing well and being looked after. I did not feel comfortable leaving him in the hands of strangers, especially considering they did not believe he would get better or have a ‘meaningful recovery’.
I went on the Internet every day and looked for more information on traumatic brain injury. I read stories that people have shared based on their experiences. At the time, I felt like I was the only one who believed and had hope my brother would get better. It was the hardest situation that I have ever faced in my life as every day was a constant battle in making sure that his voice was heard, and he received the best care possible.
As the eldest daughter of nine children, and the daughter of immigrant parents, I felt as though it was my responsibility to always look out for the family by using my voice and knowledge to help them make decisions.
Everyone always came to me for support and advice. Yet, in this situation I did not know what to do. It felt like life was moving 200km/hour, much faster than I can actually process what was going on.
I was just trying to get through each day not knowing what would happen the next second, minute, or hour. Comforting everybody else was my way of coping because it was one thing to see a sister or brother cry but to witness my parents falling apart only meant what was happening was actually real, and I needed something to hold on to. Positive thinking, and remaining optimistic was the only way I would have been able to get through it all without losing my mind.
I often felt like I was alone but I always remained optimistic. I wanted to give my brother every chance to come back to who he was, and if I did not believe that it could be possible, I felt like I was robbing him of his potential to successfully recover.
Consequently, I would spend 18 hours a day in the hospital, every single day for the past two and a half years that he was hospitalized. It never occurred to me how much time I spent being in a hospital.
I never once thought about myself as a I sought comfort from knowing what was going on in each step of his care. Without giving it any thought, I made the decision to never leave his side and put everything else in my life on hold. I felt guilty if I was doing something that made me happy but did not involve him. I couldn’t think about myself knowing my brother’s suffering.
At the time when this happened I was an undergraduate student. During my free time I used to volunteer at hospitals, engage in various extracurricular activities, and enjoy time with family. Since this happened I felt like I lost all motivation to continue living my “normal” life as nothing about it was normal anymore.
I put the word normal in quotation marks because it is a subjective term. It was extremely difficult to see someone I knew all my life suddenly go through all these struggles, challenges, and difficulties in everyday activities that as able-bodied humans we took for granted.
Furthermore, I found it particularly difficult to balance out what was important to me as I constantly thought of his well-being and would spend most of my hours at the hospital. My rationale for why I was happy to take on such a role was that I wanted everyone in my family to feel content, and not be overwhelmed with what was going on.
Most importantly, I did not want to see everyone miss out on life, friends, and the things that they use they use to do on a regular basis. It was easier for myself to take on this role and still be in high spirits with missing out on the daily things that I used to do, however, the rest of my siblings were just kids, and I did not want to rob them of their childhood. It seemed as though everyone was able to get back into their daily routines and still do what it was that was important to them such as school, and work but I just could not move past this part of my life.
As a caregiver, it is easy to forget about yourself as you are constantly caring for another individual day in and day out. I tended to bury my emotions and how I really felt from others. I never spoke to anyone about how I felt because I did not want to consciously think about it. Everything seemed surreal, and I could not come to terms or accept the situation.
Whenever I thought of the circumstances, I felt lost, out of place, and that nobody knew how I was feeling or what I was going through as most of the time I would be alone at the hospital. Nothing in life prepares you for this nor do I think there is a manual out there that explains how to feel, what to do, and to how to cope when situations like this happen. Even if information like that exists, I strongly believe that every situation is unique in its own respects and that there are many other variables to factor into the equation.
“So the hospital phase is over, isn’t that awesome, now you can finally get back to your normal life!” This is what most people said, and the reality is that after you leave the four walls of the hospital, another chapter of the rehabilitation journey begins. It is a whole new world when you have been away from your ‘normal’ one for such a long time, and many people are not aware, or understand what that means. What happens next? What is life going to look like in the next five years, or even two? Nothing is certain, and every day should just be taken as it comes. Recovery is a lifelong process, no matter what the gains.
Fast forward to over three years since it happened, and about 11 months after leaving the hospital, I can say my brother is doing very well and is much happier to be home. He looks very healthy, much like his old self. I am dealing with the challenges of returning to my old, previously ‘normal’ life, which doesn’t seem normal anymore.
Motivated to return to the life he once had, my brother never gives up. He works hard every day, challenges himself to new lengths, in therapy sessions with his occupational therapist, and physiotherapist, and in everyday tasks.
He once said, “What is it that I will do for the rest of my life? I want to do this, be this, and go here. There is nothing that I cannot do if I work hard. Yes, I had a TBI, but that does not define me, it is just a part of me. I’m still the same person, do not treat me any different.”
I am an avid believer of this quote from Indian author Ritu Ghatourey:
Everything happens for a reason. That reason causes change. Sometimes the change hurts. Sometimes the change is hard. But in the end its all for the best.
I want to take this moment to say that given how horrible and scary this situation was, I am deeply grateful for all that I have witnessed, and learned over the past three years. If it was not for this situation, I would not have known how little people know and understand about the nature of TBIs, the various stigmas and assumptions that society fosters, and how this shapes and influences the ability to successfully reintegrate back into the community, and work as rehabilitation is a lifelong process.
The lack of understanding and awareness in society is a major barrier to successful reintegration, and is a public health concern, considering that TBI will be one of the major leading causes of death and disability by the year 2020.
I made meaning of this situation by believing that for me what had happened was a turning point to help me realize where my passions lie, and what it is that I want to commit to for the rest of my life.
Before this happened, I learned about TBI in my studies but I never once imagined what it would look like first hand. I never understood what it meant to be able-bodied, and to be able to do day-to-day things that we normally do not think of and have taken for granted. Furthermore, I never realized how difficult it was for someone to get around if they were on a wheelchair, and this includes going to the grocery store, the park, or even the bank.
It is through this experience that I have found something that I am immensely passionate about, and it is improving and enhancing the lives of TBI survivors, and their caregivers.
Samira is an MSc Candidate at the University of Western Ontario, in the Health and Rehabilitation Sciences Program, specializing in Health Promotion. Her current research focuses on oral health in traumatic brain injury, where she is qualitatively exploring the lived experiences of health professional students in various rehabilitative programs such as occupational therapy, physiotherapy, speech-language pathology, and nursing.
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.
Survivors of IPV
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 Support is Crucial
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.
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.