“In my eye appointment today, I learned something interesting. Apparently, I blink extremely infrequently, The doctor suggested that lots of people must think I’m staring at them. That may be the answer to why so many people are very annoyed with me for no reason that’s understandable to me. I suppose that could unfortunately mean that in addition to telling people that I’m a crackpot with unreliable information retrieval ability, I’ll have to also say that I’m inadvertently blinkless. Good grief!!”
When I stare at you, please don’t take it wrong!!
– Marilyn Macmillan
On Saturday, January 17, 2004 Janko was out with some of his friends in London after coming home for the Christmas holidays from Fordham University in New York, where he was attending on a full soccer scholarship.
It was the night before he was to fly back to New York to resume his studies when the car he was in hit a patch of black ice and spun out, crashing into a telephone pole. Unfortunately, the point of impact was precisely where Janko was seated in the back seat.
Although his memory of that night is gone, Janko thinks he saw the pole coming because he turned his head and hit the headrest of the seat in front of him, smashing the bones in his face and skull. He also sustained a stable fracture of the C2 vertebra and his pelvis as well as a broken right ankle.
He was rushed to the hospital with a Glasgow coma scale rating of 3. The doctors were not optimistic about Janko’s survival. They told his family that if he survived the first 48 hours, then they’d talk about what steps to take next. He did survive and after much discussion, it was decided that Janko would require surgery for the compound fracture of his femur, which was worrisome because it had broken through the skin and there was chance of infection.
Janko survived that surgery only to have another to alleviate his inner cranial pressure by removing his forehead bone. This entire trauma resulted in a traumatic brain injury and it has changed Janko’s life significantly. Before the accident, Janko was extremely active playing basketball, football and his favourite, soccer. His relationships have also changed.
His relationship with his mother has strengthened because the love and support shown to him by his mother and family in general motivated him to keep going. However, he says that 95% of his friends prior to the injury have moved on, but he says he has made new friends that are more understanding at Cornerstone Clubhouse and in the brain injury community in general.
Janko says that he is most proud of returning to Fanshawe College and obtaining a certificate in General Business and his new responsibilities as the Member who oversees The Scene publication at Cornerstone Clubhouse. Janko is motivated by his desire to keep improving and proving wrong the people who doubted his capabilities .
Instead of playing sports, which he can no longer do, Janko spends his time volunteering at the Brain Injury Association of London & Region once a week and he spends time at the Clubhouse twice a week, attending the Wellness group and the outings with other Members to shoot pool every other week. Janko also spends an evening and an afternoon with a rehabilitation counselor, or as Janko likes to call him, a leisure buddy.
Despite everything Janko has gone through, he enjoys all the things that he is currently involved in and he is no rush to change, however he does understand that he needs to make a couple of very important decisions to determine where his life will be in the future, but one thing he is certain about, he enjoys being alive!!
We need to buy bread and are kerfuffled by the meaningless of the advice we are given by caregivers as a guide to doing this simple task.
Rote is a way of learning by endless repetition. It is also a homonym for ‘wrote’. Rote is enacted by repetitive verbalizing, thinking and writing.
For those of us who are struggling with a degree of difficulty to retrieve information from our brain, we are advised that ‘rote’ helps us do that. That may be a fine thing to tell us, but it can be tediously boring. We can say ‘bread’ many times, we can write it out many times, and visualize paying for it at the store many times. This process can be so tedious that we wonder whether it really matters if we do get bread.
Since pencil makes the best memory, we are also advised to write it on paper, but that presents a problem. We can easily lose the piece of paper or forget that we have it to look at when we’re at the store. We are, thus, caught between a rock and a hard place by trying to carry out the advice of rote and list.
However, there are ways we can look at such types of advice to help our memory.
ROTE: Everybody, no matter how severe their brain injury, remembers the alphabet. That is because it has been etched in our mind by endless repetition, by repetitive singing of the alphabet song and by writing it out in sequence many times. Knowing the alphabet proves to anybody that rote does work!
LIST: We can carry in our pocket or purse a small blank notebook. This notebook can be used to record anything we want to remember to do. When we get to the store for our bread, we can look at our notebook and easily find what we wanted to buy at the store. When we buy it, we can cross it off our notebook so that we don’t foolishly end up buying bread later on in the day.
CUE: There is a type of memory that’s not particularly discussed. That involves visual memory. When we know we need to buy bread, we can visualize ourself at the store, picking out the bread, paying for it and putting it away where it goes at home. That visualization works. We are essentially cuing ourselves to what we need by what we see.
Thus we have solved our problem of remembering to buy bread. We can repeat it by the rote method, we can list it by using our notebook that is always with us, and we can give ourselves a cue by visualizing getting it.
While these words are focusing on buying bread, the same methods work for anything. Once you try it, you will be successful.
There’s no such thing as a problem that can’t be solved. Whatever you particular problem as a result of your brain injury, write in and you will receive advice of how to compensate effectively. Once you get into the swing of doing things you want when you want, your expectation of doing so will escalate tremendously.
With a positive expectation, most humans can do things. This is shown by the rhyme that goes: “I think I can, I think I can, I think I really can. I can do most anything if I only think I can. I knew I could, I knew I could.” It’s not whether you win or lose, but how you play the game. Play your game by trying things until something works! If you don’t try, you don’t succeed! Even though we’re not a judge, we can TRY!
Of interest, we should realize that the methods that are called rote, list and cue are used by anybody to remember anything. They are also the way students are taught by teachers to remember and babies are taught by parents to remember. With understanding that it actually works, we can be our own teachers!
– Marilyn Macmillan
I was asked to write about what it is like to be Lincon’s caregiver. First, I must tell you a bit about my son. Lincon was born October 13, 2016 and was the most beautiful baby. As he grew, he met all his milestones right on time. He loved to play outside, colour and play ball. He was the perfect baby in every way.
Things changed for us on December 22, 2017, when he was 14 months old. Lincon was not acting his usual self while he was at daycare. He had a seizure and was rushed to the hospital where it was discovered he had a brain bleed. Lincon had to have an emergency craniotomy. We were awfully close to losing lincon, thankfully that surgery saved his life.
This was the start of a long and never-ending journey of learning how to care for lincon and his new needs. Lincon has many disabilities as a direct result of his brain bleed. Most days I feel like a mom, a nurse, and a therapist. I am his main care giver, and I am responsible to do physio with him and ensure he gets all his meds. I do this day in and day out some days it is exhausting. This has been our new life for three and a half years now. Your whole world changes when someone you love has a brain injury.
Lincon is in a wheelchair full time because he has right side hemiplegia. I Do not have a lift for him, so I do all the transfers. Lifting him in and out of the tub is by far the hardest. Lincon is about 40lbs now and he is still growing. We use his walker daily and he has made some gains with it but mostly uses it for standing. Over the years Lincon has made some gains with his motor skills. Two and a half years after his brain injury he started to sit with some assistance. Now he can sit in a w position with no assistance. He can go from laying to sitting on his own but does not have the ability to stand on his own due to the right-side hemiplegia.
For a long time, it was a goal of mine to help lincon learn how to eat again. It would take me over an hour to feed him half a jar of pureed food. It just was not enough to sustain him. Then with his increasing seizures he seemed to have less and less interest in eating. I know he is getting the food he needs through his g tube so now we just have food for fun. On a good day lincon can only manage a few bits. However, he has recently learned how to drink from a straw, he may only drink half an ounce but is a skill we will continue to work on. Practice makes better but not perfect! We always stride for better.
Lincon has a g tube for all his nutritional needs. When I first learned how to set it up, run a feed and give meds I was always so fearful I would do something wrong. Now it is second nature to me. To us Lincon’s g-tube has become normal. I push his medication through a syringe 3 times a day and I have had this routine for over 3 years now. Everything Lincon eats and drinks goes through his g-tube. I set the pump up and clean it four times a day everyday. In the past I would panic when Lincon has pulled out his button. It was a trip to the emergency room every time. Now I change it at home every three to six months with out a worry. I have begun to accept that I realize that he may have a g-tube his whole life.
Some of Lincon’s disabilities I seem to forget at times. The other day we were at the doctors and they asked about Lincon’s vision because he is legally blind. He can see about 3 ft, but doctors are not sure how well he can or cannot see. Its just a habit to hold things close to Lincon for him to see them. I know that Lincon legally blind, but it was like for a moment I had forgot. When I buy toys for lincon I always buy things that have lights or make sound because of his poor vision. It become so normal for me that at times I completely forget.
I have come to accept the reality that my son might not ever have words to say I love you. All though his smile is enough for me. His laughter when I tickle him, his cry when he is upset and his yells/screams when he is excited is how he communicates. I have hoped for years he would start to learn some words. Even if his only word was mom. Its okay though because I have learned his language and I understand him.
The one thing that always reminded me that Lincon had a brain injury is his seizures. They are hard to manage with medications as he is on the max dose for each. Every morning and every night I give him his anti epileptic medications twice a day and his CBD oil three times a day. Despite the medications he still has seizures everyday. They started as absent seizures that were extremely hard to notice. Most people would not know Lincon’s was having a seizure if they did not know him. Then the atonic seizures started they were more noticeable. Lincon would just go limp for 10 to 20 seconds. Thankfully, these stopped with an increase of his medication. Then the clusters of myoclonic started. At first, he would have one every few days. They increased more and more until on a good day he would have 10 and a bad day 30 or more. So, his neurologist added a third medication to decrease the myoclonic seizures. We had a period of decreased seizures, but it came with many side effects. He was Tired, drowsy, had a loss of coordination and he drooled constantly. At one point I told his doctor I would not increase it any further as the side affects were too great. We had some good seizure control for a few months, but they came back like they always do. As seizures begin to increase again, we had to increase this medication to the recommended dose very. We gradually increased it over about three months. Every time we think we are starting to get some seizure control they come back. When they come back its like they are worse than before.
It is a difficult reality I live raising a son with a brain injury and special needs. I always wished he would just be “normal” again. I wished for years that lincon would relearn some of his lost skills. I wished for so long that he would be able to eat, walk, talk, watch TV, play with regular toys, use his right hand or even tell me when he needs to use the toilet. I love my son very much. I am at a point that I am coming to terms with our new reality, but I am scared. I fear how I will continue to care for him. Some days I worry about how I will continue to care for him as he grows. No matter what I will manage, and I will adapt. I will continue to learn the best possible way to care for lincon and help him reach his full potential. Ill care for him for the rest of his life because I love him unconditionally. Even if that means my life and dreams are on hold. As long as I am physically able to care for him.
Brain injury is very misunderstood. They range from mild to severe and are devastating to the individuals and their families. Lincons brain injury left lincon with severe disabilities. It has affected not just lincon but our whole family. I would love to see more awareness and more education about brain injuries. I will wear green for someone I love everyday this June. Let us shine a spotlight on brain injury this month!
In June 2018 and for no specific reason, I suffered an acute stroke while I was out of town. Simply put, I fell asleep before taking the wheel to drive home to Paris from Hamilton. Thankfully, I managed to make it home safely after filling up my gas tank and paying for it, while stroked, with no memory of doing any of this whatsoever.
I spent 11 and 371 days in the hospital and at home recovering respectively. My stroke was a result of a carotid dissection, a tear in one of my carotid arteries. As a result, I lost two-thirds of my right brain permanently with no hope of getting any of it back. At the time of my acquired brain injury, I was a semi-pro mountain bike racer and runner. Once admitted and fully assessed at the hospital I was given a very slim chance of walking again. But through perseverance, I am walking, riding my bike and working again. The only after-effect I have is quadrantanopia, a lesion of an optic radiation nerve.
The main thing that inspired me the most to not let the prognosis of possibly being in a wheelchair for the rest of my life at 48 years old get me down, was how encouraging and supportive my physiotherapist Joe was. I believe I would be in worse shape today had it not been for his words of support. He taught me to push the limits of the human soul in order to get myself out of the wheelchair. “Be myself, only better”, he repeated to me again and again while trying to get my legs to move and not let the stroke get the best of me. Family support was also paramount in my recovery. I also cherished having the opportunity to experience zootherapy while hospitalized. Once I was home, I dedicated my time researching anything and everything about strokes. I Googled the keywords strokes…men…vision trouble… 48 years old…etc and read as much as I could on the topic.
I knew I wanted my life back, but I realized that we don’t get what we want in life. We get what we have to have. So I started attending seminars, conventions and symposiums on brain injuries so I could learn and help myself get better and healthier. Through my research and speaking with dieticians, nutritionists and neurologists, I discovered that nutrition plays a vital role in post-recovery care. I then chose to change my eating habits and cut out most processed foods and follow an anti-inflammatory lifestyle as inflammation plays a key role in well-being. It is my belief that through self-discipline, dedication, eating well, self-care and moral support, anyone can make the impossible possible. I feel attending a support group was instrumental in getting me on the right path, so I highly recommend it to anyone even if you think you probably won’t benefit from sharing your story. In closing, please remember that life is like seasons. It won’t always be raining or cloudy, better days are always ahead.
I was 43 and had recently relocated to Saskatchewan when I acquired a severe brain injury from a motor vehicle accident. It was late afternoon and approaching dusk just before Christmas in 2003. My daughter who had just months earlier graduated from high school decided to accompany me on this work-related trip in my little hatchback. As we slowed down to the posted 80 kmph on the highway, a commercial truck proceeded across it from a side road causing me to t-bone it. Leah and I were knocked unconscious but she came to immediately while I did not. She was alert to the aftermath with both of us grievously injured and my head resting on her lap. Being trapped inside the wreckage while EMS worked for 40 minutes freeing us from the twisted metal is a memory that comes back to her in nightmares.
We were taken by helicopter to Royal University Hospital in Saskatoon where they repaired my ruptured aorta with a left ventricle bypass. During that surgery I suffered a stroke. Leah had an MRI which revealed an old acquired brain injury (ABI) during infancy when she had febrile seizures from high fever. The tell-tale sign of that old injury was seen in the prefrontal cortex. Much of it had become granular, causing learning disabilities in elementary and high school.
Leah spent the next weeks over Christmas on a separate ward while I was in an induced coma for almost 2 months allowing injuries to heal as well as a heart bypass, surgery to my broken neck and 3 limbs which had been reinforced with metal rods and screws. Finally in early July, I was released from a nursing home and able to join Leah in a newly rented apartment near the hospital. With her own pain from a broken femur, she lugged my wheelchair up and down the steps to take me for walks in the area. I finally convinced her to return to her surgeon to look at the break over a year later. The rod that had been inserted so long ago kept the broken bone aligned but the unhealed break just swivelled around that rod. It was finally wrapped and fixed permanently.
Although I had more physical injury, Leah had the emotional trauma of being fully awake and conscious of the impact and excruciating pain, the chaos on the highway, the ensuing emergency transfer to Royal University Hospital and of her mom being kept in coma in ICU. As a divorced mother, I still consider the very worst part of this accident to be Leah’s second brain injury and emotional trauma to both of my children. Their beloved grandfather passed away suddenly while we were in hospital. Her younger sister Lynn visited weekends from our home 3 hours away but thankfully a kind family supported and encouraged her to stay in the village to finish high school. That community is tight and everyone had parts in helping us through.
In the 2 decades since that accident, brain injury has been prevalent for Leah and I and we three have moved back to Ontario. Lynn was traumatized by anxiety and helplessness while having to fend for herself. Leah still has flare ups of PTSD from all that she has experienced since that day but we are thankful for our magnificent health care and support services available to all Canadians. She received therapy for debilitating fear of being in a moving vehicle and of hospital waiting rooms. The waiting room was representative of her grief and survivor guilt.
We have both changed considerably. Personality change is to be expected but that doesn’t necessarily have to be for the worse, just different. Although Leah was a bright student she had difficulties focusing and suffered depression all through her grade school years due to her first brain injury. ABI in childhood causes learning issues but the brain has a remarkable way of creating new learning pathways which Leah was able to utilize well. When the traumatic brain injury came along 17 years later in our car accident there were far more challenges for her but with persistence and support was able to complete a Social Science degree with Distinction at the Universities of Saskatchewan and Waterloo. She has a beautifully raised son and a career. She still struggles with poor memory, time management and organization.
I had previously worked full time at McMaster University and for Saskatchewan Social Services. I was an oil portrait artist in my spare time. I hiked daily along both the Niagara Gorge and in the Saskatchewan countryside for 15 years in my old life and now am unemployable and have to rely on a hiking walker. I can no longer climb hills or hike uneven trails but I can still walk along level, maintained hiking paths in the lovely community of Stratford. I live independently in my own home with the support of my daughters and two support workers.
18 months before this accident, a coworker approached me about illustrating a narrative he had written. I was thrilled to work on his vividly written story starting in the spring of 2002 and I completed 3 or 4 of the illustrations before things came to a sudden halt with the ABI. I had to relearn to paint as well as activities of daily living as basic as walking and talking. A few years later I had regained enough of my oil painting skills to show solo at the Gallery on the Bridges in Saskatoon. It has been a labour of love but 19 years later I am almost finished those 12 book illustrations and we hope to produce a picture book in the coming months. Never give up – even if takes 19 years!
The most important thing I want to impart to my fellow ABI survivors and their caretakers is to really reach for those stars, even with the extra challenges. It is always worth it. Don’t expect life as usual as it will be much different. Find and be involved in a good support group for fellow survivors and caregivers. Personality changes can cause the loss of old friends or even family but know that there are so many more of us out there in their place. We certainly DO understand the complexities of a broken brain that many from our previous lives cannot. And that is okay. Sometimes it just takes the experience of surviving an ABI or being a loved one of a survivor to invest in the learning in order to come to that understanding.
Unfortunately, the high rate of ABI will continue day after day through disease, auto or bicycle accidents and a gazillion other causes but listening and learning will increase prevention and allow all of us to live our best lives in spite of it all. Never be afraid to ask for help. It’s out there and in Canada it’s financially doable. Blessings to all of you beautiful people!
My dad; my dad has always been strong both physically and mentally. Dad served many years in the US military and completed a tour in Vietnam. Dad loved riding motorcycles and did many trips across the country with his friends. Dad was married to my mom for 20+ years and was the guy you called upon to help install your new toilet and fix your plumbing, or install your pool, or build a garage, he could fix or build anything….a real “Mr. fix it” they would say. Dad was an avid fisherman and enjoyed camping which we did a lot as a family when we were small. One of dad’s greatest joys was being a grandpa….this all changed on the night of January 24th, 1996.
I had just put the kids to bed and was settling down to watch TV and enjoy the quiet…when the phone rang and it was mom. “Dad’s had a fall and bumped his head while roller skating. The roller rink sent him by ambulance to the hospital for examination as a precaution and I will call you back when I know more.” This was odd and my spider senses were tingling because my dad would never just go to the hospital as a precaution….either you were ok or you weren’t; he said this so many times. I picked up the phone and called my friend to come sit with the kids and headed up to the hospital.
Upon arrival to St. Joseph’s Hospital Emergency Area, I must have looked panicked stricken as my husband and I were escorted to a private room and two police officers a nurse and doctor all came in to the room. I knew immediately something bad had happened as this was not normal. But absolutely nothing could have prepared for what they told us. Dad had had a massive heart attack and was without oxygen to his brain for over eleven minutes and they were still working on him. They also advised us that we needed to prepare for the worst. What did that even mean?? At this point I felt light headed and weak, and could only see their mouths moving but couldn’t hear or even process anything they were trying to explain. This was not real or happening, dad was so healthy this can’t be true. I am going to wake up from this nightmare…..but it was not a dream.
For the next 72 hours my family and I spent every hour by his bedside watching him fight for his life. I remember there being so many wires and tubes, the beep, beep sounds of the life support system working to breathe for him. The doctors came to tell us after 48 hours that dad had suffered a massive heart attack and had severe heart damage that would require surgery to repair, but worse than that dad had an ABI (Acquired Brain Injury) caused by a lack of oxygen to his brain. (I didn’t even know what ABI meant at that time) They continued to say that dad would likely be a vegetable and not likely to be able to do anything for himself and require 24 hour support that’s if he survived and we should prepare and discuss as a family next steps. When I asked what that meant, they simply stated “remove him from life support, and plan a funeral.” I felt like I had been punched in the gut and immediately began crying….but I knew my dad was a fighter and was going to survive. He had to…
The next 3 months dad spent in St. Joseph Hospital in the cardiac care unit. He had heart surgery to repair his aorta and then when stable enough he was transferred to Parkwood Hospital where he entered the Brain Rehabilitation Unit where he/we would spend the next 15 months. At the time of dad’s admission to Parkwood dad thought I was 12; my sister 10 and my brother 7. He had lost 15 years of his short term memory. Dad couldn’t remember he had 4 grandchildren or even recognize their faces when shown a photo. Dad slowly learned how to speak, read, days of the week, months of the year; then the tough part….walking, dressing and shaving and all the activities of daily living that that we all take for granted. At this point we didn’t know if dad would ever be able to care for himself again let alone live alone. We took shifts working with dad every day at his rehab, going for walks, doing exercise, working on reading, hand eye coordination, eating with fork and knife and then we would spend some time talking and looking through photo albums trying to spark some memories.
At about 9 months into dads rehabilitation I would get excited when dad would remember names and dates and he was up and walking now. But the doctors and nurses always reminded us not to get our hopes up and this might be as good as it gets…..they suggested we start touring LTC Homes. When I got up the courage to do it we arrived at the first LTC I didn’t get three steps in the front door and I started crying and said to my uncle, “My dad is not living here”. I turned and left. I was not able to accept this was his fate; not now, not yet, maybe not ever. I remember the smell….It made me sick. I remember thinking; if this is as good as it gets then he will stay with me. Within a few weeks of this Dad starting remembering things like names and faces being able to read and walk alone unassisted, showering alone and becoming really stable on his feet. This was so encouraging. It seemed every day was a small milestone… life was going to be different but dad was a fighter and was learning new skills, and coping strategies every day…as were we! We needed to remember NOT to say “remember dad” or “come on dad” Remembering that everything took extra time but it was important to give dad the time to do things for himself in his own time…..I kept thinking could he really be ok?
Fast forward 5 years; Dad was living independently in his own apartment. He may not have known how to use certain tools anymore, and couldn’t install a pool or fix plumbing, or riding his motorcycle across the country but my dad was/is enjoying life. Together we had to learn how to enjoy new hobbies and spend time together without getting frustrated if things took extra time. Those adjustments have included doing small tasks in their entirety or doing things in a quiet space with little distractions. Some of dad’s new hobbies are walking, gardening, baking, (he makes a mean zucchini cake) reading, and golfing with his grandson…oh! And he still loves fishing…that hasn’t changed at all.
Today it has been 25 years since his ABI and things are great, dad has even traveled extensively in Europe on his own. Dad worked hard on improving his social skills, being able to be in crowds and learn how to exercise patience practicing the skills taught to him on how to remember important details.
Lastly; my dad taught me the value of enjoying today because you might not have tomorrow; to exercise and practice patience.
Dad’s famous saying….”don’t sweat the small stuff”. This has a much deeper meaning now. I try to exercise this each and every day.
My dad is my hero and my children are lucky to have him as their grandpa!
Sincerely: A very proud daughter…Michelle Bloodworth!
My first introduction to Brain injury happened when I was in my senior year of high school playing in a rugby match After a bone rattling tackle, all of a sudden, my vision was devoid of colour. I figured it was a combination of taking my asthma inhaler too much combined with the repeated blows to my unprotected head. I told my coach and he gave me the typical coach- like answer of “Just walk it off. I once had purple vision when I was playing rugby when I was your age”. You’ll be fine”
As it turned, out that incident was not from my inhaler, nor the many hits to my head. It was my first instance of seizure activity. I didn’t know that at the time, so I returned to the field and finished the game. After I continued to experience intermittent and unexplained dizzy spells, for the remainder of that year, my mother took me to see my doctor and after a barrage of CT scans and finally an MRI, I was diagnosed with a rare type of brain tumour, which thankfully was benign.
To keep a very long story short( trust me I could go on and on. I’ve had both kinds of brain injuries; (traumatic and non-traumatic); both kinds of meningitis (bacterial and viral); both kinds of strokes (hemorrhagic and ischemic). I’ve had 2 brain tumours (the original mentioned above and its reoccurrence); a total of 8 brain surgeries consisting of 3 craniotomies, 2 ventriculostomies, and 3 shunt revisions. I’ve had 6 weeks of radiation to prevent a third craniotomy, but although the tumour was shrinking, the cyst associated with it grew, necessitating the third and last craniotomy. In 2005, I was assaulted causing a subarachnoid hemorrhage. (The hemorrhagic stroke as mentioned above) and due to all of the scar tissue on my brain and the fact that I keloid scar, I had an ischemic stroke in 2019. Even though half of my vision in each eye is blind (a result of my first craniotomy – where the neurosurgeons “assaulted” my optic nerve, and my balance and dexterity were largely affected after I was assaulted, this most recent injury has forced me to rely on a walker because it exacerbated the symptoms from my previous injuries. These symptoms include fatigue, trouble problem solving, processing information, and feeling extremely overwhelmed in crowds and noisy environments.
After the assault, I became involved with Brain Injury Association of London &
Region (BIALR) where I chaired the editorial committee for the quarterly publication, The Monarch, using the English degree that I acquired in 2004 from UWO. I was one of the first mentors trained in Ontario for the Peer Support Program where “veterans of brain injury” mentor those who are new to the brain injury community by reflecting on their similar, shared experience. I was the survivor co-chair of the London support group with my mother (who was also trained as a mentor the same time I was). After my one and only partnership with a young man who was in a car accident, the Executive Director of the Association at the time, “promoted” me to the role of the Peer Support Coordinator (PSC) who oversees the Program in the London area and liaises with the 16 other Peer Support Coordinators from across the province to find the best match possible for partners (the ones receiving the support and mentors (the ones trained in offering support with their own lived experience with brain injury).
After the former PSC vacated the role. I soon followed in his footsteps by being BIALR’s OAC (OBIA Advisory Council) survivor representative where I eventually was elected to sit on OBIA’s board. And although my involvement with BIALR has lessened over the years, with me becoming a husband to a fellow brain tumour survivor and a father to a beautiful 9-year-old daughter, I am still BIALR’s Peer Support Coordinator (14 years and counting). It gives me purpose in my life to know that sharing my experiences with brain injury can give hope and inspiration to others affected by this cruel affliction.
Dancing in the rain
“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain” by Vivian Greene has to be one of the best inspirational quotes I have ever come across; at least for me personally. It was 2007, I was 26 years old and little did I know a storm was brewing.
My boyfriend and I had just recently split. We shared a child who had just turned 3. I had just finished my second year in College and was one credit shy of being a graduate. I had been looking for work in the field of study with no success. I was in a lot of debt, using some self-destructing behavior and my priorities were not right to say the least. It was Remembrance Day of ’07 and my personal chaos got the best of me. My Step Dad, (Dave) was a soldier. We were together doing the days celebrations with Mom and friends included.
Alcohol, especially then was part of the family. When there was a celebration, we drank. When things got chaotic, we drank. It was a learned behavior I picked up over the years and like I said, my life at that time was pretty chaotic. It was suggested I sleep at my parents that night. My child was with her Dad. Eventually I agreed. I was safe and sound or so my parents thought. It was after they shut down for the night, a loud noise was heard. Mom knew something was wrong. She and Dave came down from their room to discover I had fallen down the basement stairs. I had hit my head on the concrete floor and I was bleeding out. My breath was shallow with gurgle.
Because of the fall, I was in a coma for nearly 4 days. The hospital staff wasn’t sure if I would wake up or if I did, what state I would be in. When I first awoke, I spoke as if I were 5 years old. I had lost hearing in my left side. I’d developed some facial paralysis and hadn’t a clue of the reality that lied ahead. None of us did. I literally had to relearn how to walk, talk, and went through an abundance of therapies including, Occupational, Speech, and Behaviour therapies. It was during these therapies and doctor visits my future would be reviewed. Would I ever be able to hold any type of employment because of my deficits? The fatigue and memory impairments were not going away. I was always told no. That answer took a toll on me, but it was what it was. This all sounds pretty grim right? Well…… therapies weren’t the easiest dance, in fact they were the hardest dances ever, but because I stuck through them and because I had a great support system, so many other dancing opportunities came my way and they have been amazing!
The boyfriend and I rekindled our romance after he vowed to (literally) take care of me for the rest of my life. We married in 2008 and are still going strong. I was determined to have enough balance to walk down the aisle. With physical therapy, it happened. My husband is my rock. We have learned to lean on each other so much through this; me on him, he on me. Words cannot even describe our bond.
It was shortly after our daughter started school that I began to volunteer. I remember it was pretty scary at first but I have always loved kids and the school was looking for help. I shared about my long-term deficits and the school accepted me for me. From there it gave me the boost of confidence that I needed to eventually explore other volunteer opportunities including the Brain Injury Association of London and Region and the Canadian Country Music Awards. The CCMAs was my favourite. With communication and determination I rocked that week. It was such an experience. It was also that year I got to witness the birth of my niece. Who knew I would ever have the stamina to pull an all-nighter post brain injury. I then did it again 2 years later when my nephew entered the world.
Let’s fast forward to the now. It’s been nearly 13 years and I can certainly say I am still dancing. The dances are a lot easier now. I still have deficits but I also have tools that I use every single day. I know that if I meet someone new that making a visual connection or associating helps me tremendously. For example, if Amanda has pink hair I’ve learned to train my brain, Amanda with the pink hair. Pairing people also works great for me too. Another strategy I use is arriving early at functions or events. Crowds get to me. If I arrive first, I find it doesn’t bother me as much when the “party” fills up compared to entering a party with lots of people. It also allows me to use the excuse “I’ve been here since the beginning, I think I will head home now” as an early out. For my memory issues, taking a picture is my go to and last but not least, being aware and or accepting. Being aware of my deficits and then using a tool is the best tip ever! I have learned that I do better with written instructions. If I don’t ask for written instructions I am only going to get more frustrated. I know this so I am always sure to ask for them. Using a budget sheet to pay my bills which lists which bills I have, how much they are for and when they are due. It makes sure they all get paid
Strategies, tools and volunteering are just a bit of how I got to where I am today. Because of those dances and the dance of hope and determination I’ve reached the goals I never thought possible. We bought our first home, and I found employment! Employment that I enjoy! I am a lunch lady at the local school. Never in a million years did I think that I would be able do that and here I am living my dream. I love that it is a place that is accepting of me, but also a place where I love being. Sometimes it kicks my butt but with the right planning and pacing, I get along just fine.
When approached to write this article, I didn’t hesitate for a second. I’ve written about my brain injury in the past but never the full truth was shared. I felt it was time. Being intoxicated was also something that had taken a toll on me. It left me with the feeling of guilt for a very long time. I’ve been able to let go of that guilt now. I am proud of that.
I came across the quote “life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” after my I obtained my brain injury. It was a quote that just spoke to me and continues to do so each and every day. Some go by “If life gives you lemons, make lemonade”, etc., etc. There is just something about the storm and dancing in the rain that is just so liberating to me. Have you ever danced in the rain? It can be quite magical. Don’t you think?
Hello, my name is Mandy Jeffery and I am going to start off this article by admitting out loud that…. “I totally suck… I will never get ‘there’; I am not trying hard enough; I should be back to ‘normal’ by now; I am scattered; I am a burden; I have lost my purpose and identity; I am broken; I am scared; I am an angry beast with a short fuse who is frustrated daily…” and the list of thought distortions goes on and on. I share these very unflattering statements so that you know that you are not alone. We all struggle with negative self talk from time to time. Following, I am going to share some insights that I have learned (and re-learned, and re-learned, and re-learned) along the way but I felt it was important for you to “see” all of me so that you can identify with the struggles and hopefully share in some of the victories for yourself. I honestly don’t have it all figured out. I teeter totter from motivation to frustration, but I continue to practise some of the following techniques with the end goal being that I eventually come to a place of balance and acceptance.
The backstory: I was in an MVA in May of 2018 that resulted in soft tissue injuries, whiplash and a concussion. It has now been over three years and I still struggle with pain and post-concussion syndrome. For those of you that have not heard of it, post-concussion syndrome is simply persistent concussion symptoms that last beyond the expected recovery period. For me, that is headaches, pain, fatigue, dizziness, noise/light sensitivity, visual and vestibular changes, cognitive issues (multitasking and memory) and mood issues (irritability, anxiety and anger etc.) As far as I understand it, these symptoms can be different and to varying degrees for everyone. Immediately after the MVA I could no longer do many of the things that I used to do. It felt like I needed help for almost everything for a while. My heart would break when my 9 year old son would say things like – “I miss it when you used to actually play with us” or “you are not the person you used to be mom” (in reference to my short fuse and irritability). Light and noise sensitivity made me feel captive in my own home at times because I could not tolerate it well for very long. My driver’s license was medically revoked and it set me on a path of complete dependence on others.
It was during this early phase that I needed to learn that asking for help was a sign of courage and wisdom and not weakness. It forced me to practice communication so I could collaborate on ideas and solutions with those around me. Communication also allowed me to have someone to share the burdens with me when I became overwhelmed and even drew a couple of my relationships closer. So lesson one for me was COMMUNICATION.
Lesson two was definitely to SLOW DOWN! I have to admit that I am STILL working on this! Many of you that have experienced a concussion have heard of pacing. Often the occupational therapist on your team will give you tools to plan your day out as a way to conserve your energy so that you can make it through your day without a crash. For me I have learned that pacing runs far deeper than simply conserving energy. I have discovered through my writing that slowing down and planning my resources also helps to manage my emotions and the ensuing guilt and shame connected when I lose control of them. When I respect my boundaries and resist the urge to push too hard (which leaves me depleted) I not only avoid crashes, but I am also far less likely to become frustrated, lose my temper, and become depressed. Also, slowing down provides more opportunities to breathe deep. We all have heard that deep breathing can reduce cortisol (which is related to stress) but did you know that it can also reduce pain, improve immunity, calm anxiety, increase energy, help you sleep AND reduce inflammation?!?! So everyone, let’s slow down and BREATHE DEEP.
Lesson three…RELEASE EXPECTATIONS! Again, I am STILL working on this one…I regularly need to re-read some of my earlier writings or have a loved one or team member remind me of this one too. We need to release all expectations of where we think we should be, or what we think we ought to be able to do, or how far along we think that we should be in the recovery process, or even our expectations of exactly how far we can make it towards being “normal” again! Instead, take the time to enjoy the small victories. Expectations set you up for feelings of frustration and depression and completely cloud over your victories. Forward momentum IS still momentum no matter how small or slow it may be. Releasing expectations opens up the opportunity to appreciate each accomplishment along the way.
Lesson four…Practise SELF LOVE. How do I do that you ask? I love myself by preemptively respecting my boundaries and by resisting the urge to push too hard, leaving myself depleted. I have come to realize this mistake leaves me defenceless to the monster that is anger. I can learn to accept my limitations without equating them to personality flaws. I can seize the opportunity to open myself up by sharing these struggles with those around me so we can collaborate on ideas and also share in the burden when I become overwhelmed. This struggle can then be transmuted into an opportunity to draw these relationships closer instead of pushing them further away! Also make sure to take time for yourself: Go for a walk in nature; work in your garden; write in your journal; take a bath…all these forms of self love can help to “top up your tank” giving you more reserves to share with those that you love. This is how self love IS LOVE!
For now I will end on this…recovery is a process with both ups and downs. You will have forward momentum, you will have plateaus and you will even hit some harder down times … that is all normal. By accepting this process it can help give us the courage to put our best foot forward.
The Recovery Process
is built upon
A roller coaster
Has highs and lows.
has peaks and valleys.
has crests and troughs.
waxes and wanes.
And the uterus
menstruates and proliferates.
Absolutely no different.
It cycles between:
motivation and frustration
pride and pity
hope and despair
achievement and defeat
confidence and doubt.
Embrace the cycles
Both highs AND lows
as part of the journey
Do not judge them
nor attach any shame.
Do not fall victim
To the single dimension
Of just surviving
To avoid the lows.
It is a flat plane
That will bring you
for growth and joy
And little appreciation
For how far you have come
Or how high
You can truly reach!
With Deepest Love and Gratitude,
© Mandy Jeffery