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?
PHOTO: ALYSON ROGERS
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.
June is here and that means Brain Injury Awareness Month is here once again. Last year, I wrote a post about how awareness isn’t enough and we need to see action, in particular in terms of how concussions are responded to and prevented.
I wrote this piece from a very interesting standpoint: I had my first brain injury nine years prior and had experienced a concussion again in April of 2017. What I learned was, not a thing has changed in terms of what happens when you go to an emergency room with a head injury.
Even after nine years of increased awareness, it could have been 2008 all over again. My diagnosis was slow, multiple doctors were unfamiliar with symptoms and none took them seriously. My analysis of our healthcare system failure ended at the emergency room doors when I exited and returned to work two weeks later.
It is said that once you have had one head injury, you are likely to be susceptible to another, and surprise, I had another concussion in September 2017. I bent over to get something I had dropped on the floor at work and hit my head on the edge of a desk. Depth perception issues were apart of my original injury so this isn’t too shocking. Based on my last experience, I skipped the whole emergency room circus, I knew the drill at this point and wasn’t showing any signs of a serious head injury such as vomiting or loss of consciousness.
I thought I had recovered from my head injury until I started experiencing, by far, the oddest and unfamiliar brain injury symptoms I’ve ever had. Between the rapid blinking eyes, stiff arms and shaking, it looked like I was having seizures yet all of my tests for epilepsy were normal. Fortunately, I found a great neurologist who has been successfully treating these symptoms through medication but it was an uphill battle to get to him and to treatment.
Last year, all I wanted was for the medical profession to put brain injury awareness into action. After my latest brain injury, I’ve seen them in action and it isn’t pretty. This wasn’t the action I was hoping for and isn’t what I need as a person with a brain injury.
In the past six months, I have had doctors tell me the type of brain injury I had ten years ago was impossible with no proof otherwise, attempt to diagnose me with mental health issues and not consider my pretty significant brain injury as a factor related to my current health issues.
I’ve sat through four hour long appointments where I was taken through every detail of all four head injuries I’ve had and questioned about every decision I have ever made. It felt like I was on trial as a victim of a crime being cross examined by a defence attorney. If I couldn’t remember something, I was questioned why that was. Maybe it’s the brain injury? I hear those could cause memory issues but just a guess.
Last year, all I wanted was action. This year, I want a pause. I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these injuries. Doctors need to have a more comprehensive understanding of symptoms that go further than what they read in a concussion pamphlet if they are going to treat them.
When I acquired my brain injuries, I had to open Google and crack open some books to get the information I needed. People with brain injuries don’t have time for the medical profession to take a pause so better crack open that textbook.
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.
Spring has finally sprung which has hopefully brought you some pep in your step or zeal in your wheels to feel better during this chilly year! Bringing some extra encouragement to April’s BIST Community Meeting and to shed some light on alternative treatments that he used to heal his brain and body, was teacher, author, motivational speaker, and brain injury survivor, Anthony Aquan-Assee.
Anthony’s Story
Anthony began by telling the harrowing story of his first brain injury. In 1997, Anthony was a middle school teacher and coach of the school football team. He was excited about his team qualifying for the city finals and was anxious to get to football practice to prepare them for their upcoming big game. On his ride to practice, Anthony, an avid motorcycle rider, was struck by a car, sending him and his motorcycle flying. This landed Anthony at the beginning of a long road to recovery.
The paramedics arrived at the scene of the accident to find Anthony unconscious and in a very grave state. He was then airlifted to St. Michael’s Hospital, where he would require numerous extensive surgeries, including: neurosurgery, heart, lung, general, vascular, knee, throat, and plastic surgery.
It was an emotional and trying time for his family and friends who were uncertain if Anthony would ever wake up from the coma that had kept him unresponsive for two weeks, and if he did, what his quality of life would be post-injury. His doctors were worried that Anthony could remain in a vegetative state for the rest of his life.
Quote included in Anthony’s latest book, Rethink Redo Rewired
He started with opening his eyelids, and progressed from there, giving himself and his family hope with every gain, no matter how small. Anthony graduated to a rehabilitation centre where he worked tirelessly to regain control of his body and mind. Eventually, Anthony was able to return to work as a school teacher, but his brush with brain injury didn’t end there.
Sixteen years later, Anthony was struck in the head by a malfunctioning automatic gate which left him with a concussion. Fatigue, dizziness, brain fog, memory loss, and sleep problems were only a few of the symptoms that he dealt with on a daily basis. Unfortunately, these symptoms persisted bringing with them anxiety and frustration. When his doctors prescribed “drugs, drugs, and more drugs” to help, Anthony began to question whether there was a better method to spur his recovery.
Alternative Treatments Anthony Found Effective
*From the top, Anthony stressed that while these treatments worked for him, each person is different; therefore, everyone’s experience is different. Prior to trying any of the following alternative modalities, he encourages you to discuss any treatments that you are considering with your doctor.*
Anthony realized over the course of his recovery that, for him, the prescribed medications were only acting as a bandage solution rather than getting to the root cause of the problem. He disliked being on the same medications as he had been on previously, after his first brain injury, and felt that there must be a better way.
This is when he turned his attention to alternative strategies and treatments, which, as he would learn, had the power to get to the root cause of the problem rather than masking it. Furthermore, alternative strategies “provided the necessary conditions for the body to heal itself”, and, as an added bonus, they came with no side effects!
The following is a list of techniques that Anthony found effective in his recovery that he thought might be helpful to share:
Neurofeedback
Laser Therapy
Kangen Water
Fun, Brain-Training Resources
For those of you dealing with a brain injury and looking for a way to train your brain, Anthony has included links to a bunch of online activities and games ranging from math, to art, to optical illusions on his website.
Julia Renaud is a very talkative ABI survivor with a passion for learning new things, trying new activities, and meeting new people – all of which have led her to writing this column. When not chatting someone’s ear off, Julia can be found outside walking her dog while occasionally talking to him, of course!
Seven years ago, Shelley’s family survived what should have been a fatal carbon monoxide leak in their house. She writes how her faith has helped her family survive and thrive in the seven years since.
Shelley Taylor
In the blink of an eye, so many memories vanished. I wish I could have chosen which memories I could keep and tossed out the ones I wanted to forget. I know the memories which remain are what make me who I am today. I would be a different person right now breathing, talking, and living if I didn’t retain some of the things I lived as a child and as a young adult.
Valentine’s Day 2010 would turn into a complete game changer for my family, a day we will never forget. I’ve documented this day in words so if the day comes that the memory is gone I can always, reflect back on our second chance at life.
We were experiencing a Texas Winter and the six inches of snow which covered our town knocked our power out for three days. Fed up, on the third day we ran a generator out in the front driveway with the garage door and windows open. The Fire Chief later told us that the lack of wind and frigid air that day meant the gas settled into our home via the eave troughs instead of blowing away.
That night, my daughter, Taylor, woke suddenly to someone screaming her name. She jolted up in bed, tried to stand and quickly realized her legs wouldn’t hold her up. She fell to the floor.
Shelley and her daughter Taylor
From there, she crawled to her door and tried to stable herself but couldn’t and collapsed again, all the while having the frightening feeling of tunnel vision where you can’t really hear or see.
The thud of her fall woke me up and I ran to her. My then husband, Charlie, heard from the living room and he and I met at her doorway and found our daughter lying, lifeless and facedown. Not knowing what’s wrong with your daughter, when its too dark to even look her in the face is the worst thing I have ever felt.
Charlie was shaking her and trying to get a response. He sent me to get a flashlight that was on my nightstand. We were beside ourselves with fear. On my way to the bedroom, I started feeling as though I was losing control, and as the seconds passed I knew I had to let Charlie know something was seriously wrong with me. I had the flashlight in hand, and started running back to the hall, but the closer I got to Charlie, the further away he seemed. Everything was spinning out of control and I was losing awareness of where I was.
I knew if I didn’t make it back to him he wouldn’t know to come find me. When I turned the corner to the hallway I collapsed face first without my hands or arms to brace me, falling onto the metal flashlight and cutting my forehead open, exposing the skull. Charlie was searching in the dark for the flashlight as it had rolled when I fell and I was trying to tell him I felt blood running down my face. Things were completely out of control.
Once he found the flashlight, with one look he said he had to get me to the hospital. I said, “What is wrong with Taylor, doesn’t she need to go?”
Somehow in my head I knew she had started this whole ordeal and my mommy intuition kicked in. I was more scared for her than me!
Meanwhile, Taylor was drifting in and out of consciousness. Charlie managed to wake her, and told her she had to go get a towel to put on my head to help with the bleeding, which was now pulsing out of control from my head. We were all covered with my blood. How she made it to the bathroom to retrieve a towel is beyond any of our comprehension.
Immediately after she returned, Taylor lost consciousness again. Charlie dragged her over and propped her on top of me, against the wall as I was having convulsions and banging my face into the floor. My eyes were rolling back in my head, and Charlie yelled at me not to die on him.
Charlie called 911 and first to respond were the police. They used their flashlights and the first thing they saw were my bloody handprints in our hallway where I tried to stand, and Charlie covered in my blood. Needless to say, they turned their suspicions onto Charlie.
Shortly after the fire department arrived, and the Fire Chief began asking different questions. Charlie explained we were using a generator and immediately the Chief went to the truck to get the carbon monoxide detector. The truck was parked at the street and within steps of entering our driveway the readings on the detector began to rise quickly, so much that the Chief went back to the truck to recalibrate the device as he was not believing the high readings. Once again, walking in the driveway up to our front door the readings began to creep higher and higher. Upon reaching the door he called for his crew to exit the home and began to get Charlie, Taylor and our dogs out. A couple of paramedics were left inside with me to get me stable enough for transport to the hospital. Once outside, they realized that Taylor had “started” this whole incident and the firefighters told Charlie they wanted her checked out as well. I left by ambulance and Charlie and Taylor in his truck.
On route to the hospital, through nothing other than God’s grace, Taylor made some of the scariest and bravest phone calls she’s ever made to my sisters alerting them of what had happened and seeking their immediate help. She was much too young to understand what was going on or what was wrong with her mom, she just knew they had to get there quickly!
Several firefighters went above and beyond the call of duty and stayed at our home to open windows and stay and watch our dogs for sickness and make sure they were in a safe place before leaving.
Once at Mansfield Methodist Hospital they checked mine and Taylor’s blood gases and they were “through the roof”. Worse, my daughter’s levels were much higher than mine.
They began preparing us to be transported to Dallas Methodist Hospital to get in their hyperbaric chamber. First my head had to be stitched up, 15 stitches total, and I had to have a CT Scan to make sure I was transportable. Then off we went, on the ice, Taylor and I in the ambulance, her sitting and me on a stretcher both with oxygen on.
Upon arriving at Dallas Methodist Hospital, a doctor explained the procedures for going into the hyperbaric chamber, which was difficult to understand considering everything. I must add that at some time after our arrival we found out that the family which had just been in the chamber all died, except the father!
I was terrified for Taylor and myself! Taylor and I are both very claustrophobic, but we are survivors after our approximate three hour stay in the hyperbaric chamber.
Two Ambulance rides, one CT scan, two blood gases, two Hyperbaric chambers, 15 stitches and one concussion later, we survived! Nothing says ‘I love you” like a brain injury on Valentine’s Day.
Shelley’s dog Cruella
Shelley’s dog Gaby
My sister, Kimberley, moved in with us for about a month. Physically I was trying to heal my head, but mentally I was left with a traumatic brain injury. I started over with kindergarten flashcards, looking at an apple and saying library, and my friends and family completed most of my sentences. They scooped Taylor and I up and helped us heal.
My neurologist told me that people don’t survive what we went through and there really aren’t patients like Taylor and I. He said he didn’t know how to treat me. I cried and he was visibly shaken. Through his honesty, he became a great comfort to me as I struggled with memory and cognitive skills. We became a little closer that day and I knew he had chosen the right career.
On another of my early visits, he took his hand and made a fist and began knocking on my forehead. He said the poison goes into your brain and destroys whatever it attaches to and we have no control over what functions it destroys or limits.
To this day, my short-term memory is horrible at times, and I’ve lost so many precious memories.
Taylor and I have a saying when it comes to trying to remember things, we just look at each other and say, “Did we have fun?”
The one who remembers says to the other, “Yes, we had fun!”
That’s all that matters. But, to be alive, in whatever capacity, is amazing! I continue daily to deal with migraines, balance, breathing, vision, memory or the lack thereof. These are daily struggles for both Taylor and I.
I have fallen more times than I’ve stood, and had injuries that ranged from Band-Aids to orthopaedics visits. For six years, my greatest challenge was breathing, but now I struggle with a chronic migraine. Right now, I am close to 100 days straight of my head hurting. Every day at some point I struggle to breathe and coughing has become my norm. Some days are better than others. Sunny days are my friend. On cold, wet days I lean on my faith for every breath I take.
The more I talk the worse my coughing gets and I talk so much for work. Recovery continues every day for me and Taylor and luckily her Dyslexic brain is used to accommodating skills and this continues to be her saving grace on a daily basis. She is young, so strong, her faith is incredible, and healing has come differently for her, but memory and migraines are big battles for her. I’d love for you to pray for her right now.
Many days are challenging and bring a stream of tears but I try my best to remember that God knows the plans for me and Taylor. He knew the breaths that would follow would bring challenge, He knew this, He knew. Through it all, truly through it all I will trust Him.
God used this disaster to dissolve a broken marriage and link my life with the most amazing man, through merging tears, broken hope, and many answered prayers.
Taylor Trammell graduated in May with her Associates degree and will soon be an American Sign Language Interpreter.
Shelley Taylor will publish her book, “With My Last Breath, I’d Say I Love You: When your FAITH and HOPE slip, GRACE wins every time” March 1, 201
Time flies over us, but leaves its shadow behind. ~ Nathaniel Hawthorne
Being a brain injury survivor sometimes feels as though I have both lost and gained time. My injury occurred when I was six-years-old, and it is as if those first six years of my life have been erased. (It is hard to say for certain, because, well, I was six.)
PHOTO: MARK KONING
I have some ideas of what things were like in my early years, mostly because my Oma (Grandma) shot many home movies and my mom took tons of pictures, plus all the stories I’ve heard along the way. It’s hard to tell what is my own memory, and what has been planted there by someone else.
It wasn’t until many, many years later, that I was diagnosed with an acquired brain injury. (You can learn more about that in my memoir ‘Challenging Barriers & Walking the Path’)
Growing up without the knowledge that I had an ABI, but at the same time sensing something was wrong, I often wonder if I spent too much time questioning things or if I was spared certain other anxieties. Ignorance is bliss, right?
Regardless of my past, I can say this about my present: while I might seem to have enough time to get things done, I do not. I do pretty well, but there are things on my list that don’t get checked off. No matter how much I have trained my brain, and knowing my need to slow down, it can still be frustrating to not get stuff done!
My accommodation for work, and life in general, is needing extra time.
In some ways, taking things slow and affording yourself more time is good, but I still only have 24 hours in a day like everyone else. You see? Frustrating!! I do what I do with the time I have, just like we all do.
I feel pretty lucky, regardless of time; and I still cherish it all. As much as I may need things to slow down, taking things at a calm pace allows me to appreciate those little things I think sometimes tend to get forgotten or taken for granted.
For those of us who have come to appreciate a cautious approach to life offer a unique ability for the serene. ~ Mark Koning #challengingbarriers
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
As we prepare for Race Day, BIST has selected a special superhero squad of amazing heroes of brain injury we will feature on a weekly basis until the big day.
Meet Courageous Chris, son of Awesome Anne, and #2 in our Heroes of Brain Injury Series.
Be sure to collect all six heroes!
Can you talk about how you acquired your brain injury?
Chris acquired his brain injury during a bike race – his first race ever – in 2010. He had just landed his dream job as head chef at a luxury hotel in Toronto, and had a five-year-old son, Jesse, at home. He and his mom, Anne, describe what happened:
Anne: His bike broke in two pieces. Christopher was lying on the ground. They didn’t have paramedics [at the race]. .. He was posturing. His feet were connected to the petals. He was still on the ground when his friends cycled past him.
Chris: My feet were hooked on to the half piece. Could you just imagine someone lying there, the first piece broken off? I have the frame still. I put all the pieces of that on to my rain bike. It’s only 15.5 lbs. and my broken frame is in my room behind my TV so I can’t look at it every day. It used to be on my balcony and I’d go out and look at it every day.
Courageous Chris and Awesome Anne
How long have you been involved with BIST?
I started going to the movies [this spring] because it’s away from home and that gave me the opportunity to go on a bus and get rid of my anxiety.
Why do you participate in the BIST 5K?
I run everyday, and running with people will help [my] anxiety. I run everyday by myself no problem. But with a group, I have problems with groups.
[I’m running] to challenge myself. This is how I was going through cooking school to become a chef. It’s all about challenging yourself to see how far you can take it.
Chris with his son Jesse
What does being a hero of brain injury mean to you?
I can accomplish. I can go forward. Its all about going forward. It’s not slowing me down.
What are you looking forward to on Race Day?
I’m going to run as fast as I can and then [meet up with my mom] and walk the rest of it with [her].
Join the Heroes of Brain Injury Squad – sign up for the BIST 5K Run, Walk and RollTODAY!
Many days are challenging and bring a stream of tears but I try my best to remember that God knows the plans for me and Taylor. He knew the breaths that would follow would bring challenge, He knew this, He knew. Through it all, truly through it all I will trust Him.
