How I graduated from university after my TBI

BY: MARIA LISCIO

Out of nowhere things can change and make you feel as though everything you’ve worked so hard for doesn’t matter. That happened to me the summer before my last year of university when I was struck by a car, as a pedestrian, on my way to work.

I do not remember anything about what happened, other than leaving my house and then waking up in the hospital in an enormous amount of pain. I had severe traumatic brain injuries, including a concussion, brain bleeding and brain bruising.

Until this time, I always focused on achieving high grades in school. I pushed myself to excel in every course I took. I majored in psychology at Ryerson University with a full course load every year. Although it was challenging at times, I worked hard and landed on the dean’s list.

I did not realize the extent of my injuries until I returned home from the hospital. Doctors, social workers, family and friends, said I should take the year off school to recover. I was completely taken aback. I thought, “How could I possibly take the year off? This is my last year and I want to apply to masters programs in a few months!”

Empty University Lecture hall
PHOTO VIA PEXELS

School was one of the most important things in my life and I being told I shouldn’t go back threw me off guard.

I learned I had a mild cognitive impairment, which caused problems with focus, concentration, and writing. I noticed my writing difficulties right away, I spelled words incorrectly and my sentences didn’t make sense. I was devastated.

How could I go from being a straight A student, to not being able to spell words correctly?

Even after hearing everyone’s advice, I did not want to listen. I was determined to go back to school, maintain my high average and graduate on time, no matter what. And let me tell you, it was extremely hard.

I told all of my professors about my situation the first week of classes. They were all very understanding and told me if I ever needed extra time with an assignment or extra help, to let them know. During this time, I was still attending frequent doctor, therapist and specialist appointments. Trying to manage everything took a huge toll. I broke down many times and cried because I could not focus, I could not remember the topics I was studying, and my essays did not make sense.

Fortunately, my friends and family were always there for me during my struggles, helping me and making sure I was getting enough rest.

Woman studying with her head in her hands
PHOTO via PEXELS

Due to my injuries, my fatigue levels were very low.  I took a nap almost every day after school, before starting my homework, in fact, I scheduled them in. Without enough rest, I couldn’t focus and concentrate on what I needed to do.

However, there was one time in particular where I knew I had to persevere and prove myself. It was during one of my mandatory psychology classes, and the material was so different from the majority of my other classes. I was very confused, so I asked my professor for help. He tried to help me, however, he also told me that if I didn’t understand, I should drop the class.

I was furious! Drop the class? Not graduate this year? There was absolutely no way I was letting that happen! That comment made me realize that just because you don’t understand something, does not mean you should give up. I studied long hours, and, as always, I took naps when I needed to. I made sure I ate enough to fuel my body. I continued visiting my professors and asking for help, and I spent a tremendous amount of time working on essays.

I wanted to prove to myself and others that my brain injuries, and the struggles caused by them, do not define me and what I am able to do.  

Before my accident, I had worked part-time at a grocery store for almost six years. Initially after my accident, I did not work for three or four months so I could adequately recover. Then I tried going back to work but I could not manage it. I experienced extreme fatigue and dizziness from standing during my shifts. Even though it was unintentional, I also felt as though some people did not understand the extent of my brain injuries because they were not something anyone could physically see.

Working and being a student was something I could no longer do. I was trying so hard in school, and it was time consuming. I resigned my position to focus solely on my studies.

Through all of my battles, I managed to yet again get straight A’s. I have never been so proud of myself and what I was able to achieve, despite the circumstances. However, my most proud moment was achieving 90% in none other than, the psychology class I was told I should drop.

I graduated university that year, with honours, making the Dean’s List and most importantly making myself proud of this achievement.

I am now working for a health care clinic and I am still planning on applying to masters programs in the future. I continue to experience more fatigue than I am used too, and some difficulties in writing and focusing.

Even with these difficulties, I am going to try and preserve as best as I can.


Maria Liscio is an ABI survivor who is working towards a career in health care. She currently works at a health care clinic that assists many individuals with ABI. Maria uses her personal experience to connect with others facing life’s challenges, and strives to encourage positivity.  Follow her on Instagram at @maria.liscio.

 

 

 

 

I chose my health over the job I loved

BY: ALYSON ROGERS

For two and a half years, I worked at a social service agency for youth in Toronto.  I worked as part of a team to provide basic needs and case management to youth from diverse backgrounds.  Every day was different; on some, I ran workshops and danced to Drake in the girls’ dorms.  On others, I spent hours in an emergency room with survivors of human trafficking that had just escaped their exploiter.  Whether it was a day of fun or a day of crisis, I loved my job.

I loved my job so much that I was taking classes while working full time, with the goal of moving up within the agency.  My job combined my passion of working with young people, ability to respond to sexual violence, and knowledge of disabilities.  I loved my job so much that I worked through multiple concussions when I probably should have taken a leave of absence.  I loved my job, but two months ago, I abruptly quit.

Photo by Daria Shevtsova from Pexels

My departure was shocking to my coworkers, the young people I worked with, and even to myself.  When people leave a social service job, they usually have something else lined up. I had no other job waiting for me, and it was not the time of year to be applying to master’s degree programs.  Quitting my job came down to a choice; my job or my health.  I chose my health.

In the span of a year and a half, I had four concussions at work. With new symptoms and challenges, this was the worst my brain injury health had been since my diffuse axonal injury in 2008. Even though I was able to do my job, I was on medication for the first time and felt like I was struggling to stay afloat in such a fast-paced and demanding work environment.

On top of what I was feeling physically, some of my coworkers didn’t take too kindly to the minimal accommodation (working day shifts) I needed.  My own disability began to discredit the knowledge I had of various disabilities that dated back to before I even I had a brain injury.  My goal was to move up within the agency, so I kept how much I was struggling to myself while sharing just enough to keep the accommodation I needed. It was a fine balance.

In the New Year, I took a short contract in another department; the work was similar, but I had the freedom to work at a pace that accommodated my brain injury needs.  A few weeks in, I saw a huge improvement in my health; I had fewer symptoms, felt less fatigued and was able to participate more in my life outside of work.  My contract ended early and I was expected to return to my previous position.  This also meant returning to brain injury symptoms.  I’d had a taste of a life that didn’t only consist of work and brain injury symptoms, and I wasn’t going back.

I got a doctor’s note, spoke to the appropriate external agency for support, and came up with my own ideas, but no further accommodations were available to me.  I always knew that the decisions I made as a Youth Worker could lead to repercussions, but I never thought my disability would be used to carry them out.  The writing was on the wall – I was done here.  As much as I loved my job, I loved my health more.

On the last day of my short contract, I packed up all my things with the help of a few friends and slipped out the back door. I knew I wouldn’t be back. A few days later, I quit from home by e-mail. I had previously booked a vacation that overlapped with my two-weeks’ notice, and used my sick days to cover the rest.

Everyone was surprised by my abrupt resignation because I loved my job so much, but was it really that abrupt? For over a year, I worked in an environment that simply tolerated my disability. When I spoke about anything, let alone disability, I was met with eye rolls, and a flood of unrelated and unfounded complaints were brought to my supervisor. The youth group I facilitated couldn’t get any support, but blossomed after I left. When I had a medical emergency and needed to go to the hospital, I was left on my own until a supportive co-worker found me. Two of my head injuries were caused by the same environmental factor that remained unchanged at the time of my resignation. Looking back, I should have quit much sooner.

I loved my job.  I miss the youth I worked with and the coworkers that supported me, but I have no regrets about resigning.  I thought picking between the job I loved and my health would be a hard decision when I was finally faced with it, but it wasn’t.

I can (and did) find another job, but I can’t find another brain so I need to keep this one as healthy as possible.


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.

 

Yoga Brain

BY: ALYSON ROGERS

Before my brain injury, I was convinced yoga wasn’t for me; I was a year-round athlete and long-distance running legs were not yoga legs in my mind.

After my brain injury, I was convinced yoga wasn’t for me; I went to a few classes and struggled to keep up and do the poses.  I usually left with a headache and feeling defeated.  Ten years and 6 concussions later, I practice yoga everyday – both on and off the mat.

In 2017, a bad concussion completely changed my lifestyle. In under a year, I went from an active person who went out for drinks with friends after work, to someone who stays home due to fatigue and symptoms; someone figuring out a new life on medication and alcohol-free.

I’d like to say there was some magical movie moment where I wandered into a yoga studio and found my place, but in reality, I dusted off the yoga mat I never got around to donating and rolled it out onto my living room floor because I had nothing else do to at home.  I remembered poses I had learned in classes and did simple stretches. I was pleasantly surprised at how good I felt afterwards and kept coming back to my mat. I’d found a practice that didn’t hurt my brain, but benefited it.

Fast forward to November 2018. I was searching Myrtle Beach for a yoga mat while I was on vacation because I couldn’t imagine going four days without one. Yoga had become a huge part of my life. I practiced at least 3 times a week, was seeing improvement in my flexibility, recognized how good yoga made my mind feel, developed an interest in spirituality, began exploring meditation, and was reading yoga books, including Yoga Girl by Rachel Brathen and Yoga Mind by Suzan Colón.

The physical and philosophical aspects of yoga did more than make me flexible and centre self-care in my life; it helped with my concussion symptoms and how I feel about having a disability.  After I started practicing yoga, I noticed improvements in my concentration, balance, spatial awareness and other physical symptoms. I also saw improvements in my mood and overall mental wellness. Learning about the philosophical tools of yoga allowed me to have a healthier and honest perspective of my current concussion issues, and having a brain injury in general. I’d found something that was both beneficial for me, and that I could do no matter what symptoms I was experiencing on a given day.

I’ve written about my brain injury for years and decided I would write about the benefits of yoga for brain injury in the hope of helping other survivors, but I didn’t. If I was going to do this, I would have to be honest about the emotional and mental symptoms of brain injury I had experienced; I was ready to write about it but not attach my name and face to it. Stigma lives on and it was staring me in the face; what if someone from my workplace saw it?  Would people think I’m “crazy”?  Would I be taken less seriously?

This is how Yoga Brain came to life on Instagram (@yogabrain).  I created an anonymous account to talk about yoga and brain injury. At first, I didn’t show my face in any photos; if someone I knew saw it, they would know it was me, so it stayed hidden for quite some time.  Slowly, I started to show me face, and 6 months after creating the account, I put my name on it.  The shame and embarrassment I felt about brain injury symptoms I had never talked about faded away, and I was ready to be a face for more than just physical brain injury symptoms.

Since creating Yoga Brain, I’ve had the privilege and pleasure of connecting with brain injury survivors, yogis, yoga teachers and organizations all over the world. I was invited to be a guest on the Concussion Talk podcast and have been featured by Can Recover, Beyond Concussion and Fierce Calm. Brain injury can feel like a lonely place, but by putting myself out there, I’ve learned from others and used my experience to support other survivors.  My posts document my yoga journey, brain injury journey, and my new life that includes travelling (something I never thought I’d do after my brain injury).

Yoga Brain and my love for yoga took me on a journey I never expected. I recently finished my 200-hours Yoga Teacher Training Certification…in California.  I’m not sure where this will take me next, but I can’t wait to find out.


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.

 

 

 

 

 

 

 

Choosing to parent after brain injury

BY: MELISSA JIROVEC

Parenting is hard work. It challenges you in ways you never imagined you’d be challenged, forcing you to think outside the box and re-evaluate everything you thought you knew about pretty much everything.

Add a brain injury to the mix and the experience becomes even more complex and interesting.
Melissa & family Jason and I always knew we wanted children. We discussed and imagined what our future family would look like long before it was time for us to actually consider making it happen. When Jason regained his awareness after sustaining a traumatic brain injury, both of us agreed that a family of our own was an even bigger priority. At 24, we’d become aware of our own mortality and felt willing to attempt the uphill battle we faced, adding parenthood to recovery for him, and caregiving for me.

Fast forward four years and two children later, and we’ve learned a lot about parenting and brain injury. We’ve encountered many challenges, and reaped many rewards. The biggest challenge has no doubt been fatigue. Parenthood is exhausting in and of itself, but the fatigue my husband experiences makes it hard for him to fully participate as a parent.

There are many times throughout the day where Jason needs to escape downstairs for a nap, downtime on his Xbox, or do laundry to get away from the noise and stimulation. This is hard on me as the parent who must care for both children alone.

Our toddler is also incredibly observant. She picked up early on that her Daddy is not able to keep up with her, that he struggles physically to dress or change her, and that he often gives up if she gives him too much of a hard time because of his impulsivity and lack of patience. She uses this to her advantage at every opportunity. The baby is now starting to move around quite a bit and no longer sits still long enough for Daddy to change and dress him. However, of the two, Daddy definitely does better caring for our younger child.

 When things get rowdy around the house it takes a toll on both Jason and myself. Jason struggles to stay focused and calm, while I struggle to corral the kids on my own. Truthfully,  I sometimes feel resentment.

This is why I work hard to maintain my mental, emotional and physical wellness through journalling, affirmations, meditation, goal-setting, strength training, and getting fresh air often. Jason and I both find it crucial to maintain good nutrition for our mood and energy, in order to function well as a family unit. We are also continuously improving the way we communicate, trying our best to ensure that we are being open and honest with each other so as to problem solve as effectively as possible. We are committed to seeking improved personal growth and increased knowledge.

But as challenging as parenting in our situation can be, the benefits of becoming parents far outshine those difficult moments. For example, both of us have become more efficient with our planning and organization. We’ve learned to laugh at the little things. We thoroughly enjoy new experiences with our children and watching their little faces light up. We’ve both begun to challenge our belief systems and have started really questioning our lifestyle and what messages we are sending to our children.

How do we want to raise them? Are we showing them to be compassionate to others and the planet? We’ve realized that the only way to raise smart, kind, compassionate, grounded, aware and successful children is to do our best to model that ourselves. We are both working on that every day.

 In the end, parenting has been everything we hoped it would be and more, despite the added challenges we face. Those challenges have made us stronger and better parents.

I’ve begun to let go of the idea that parenting should be 50-50 between Jason and I, because despite knowing that it wouldn’t be going in, a small part of me still felt frustrated when he couldn’t step up and I knew that was up to me to fully accept.

The brain injury isn’t going away. But we are slowly learning tricks and strategies to help things run smoothly from day-to-day. Brain injury recovery is a lifelong journey, but having something to work hard for has pushed us into seeking the best way not just to survive, but thrive.


Melissa is a caregiver to her husband Jason who lives with a traumatic brain injury, and their two children Emma & Liam. She has authored two books, one an autobiography of her journey as a caregiver titled: ‘Getting Out of the Rut’,  as well as a children’s picture book that promotes awareness of brain injuries titled: ‘My Daddy’s Brain’. She is currently working on a third book, training for a fitness competition, and speaks to various groups about caregiving, brain injury, communication, self-care and resilience. You can follow her journey on instagram @fit.mindful.mom or visit her website at www.melissajirovec.ca.

10 things you need to know about traveling with a brain injury

BY: BLUE HELMET GIRL

My first big trip after my TBI was three years post accident, and I was terrified. Traveling is exhausting for a person without a brain injury, so it’s ten times more exhausting for someone with one. Dealing with symptoms of a brain injury is all about finding what strategies work for you.

Last spring, I traveled to Portugal and Spain for a total of 14 days and it was one of the best trips I’ve ever been on. It was my first time in Europe and I learned a lot traveling to there with a brain injury. Here are the ten biggest things I learned from this trip.

Author looking at ocean view on rocks

1. Plan

Planning your itinerary before the trip is the number one advice I have. Spacing out activities is helpful so you have time to rest. Maybe plan nothing for the day you get in and something easy for the next day. Take it easy at the start so you can adjust to jet lag. No matter where you are, your vacation does not need to be fast paced.

2. Spend on comfort – you’re worth it:

  • Buy the extra legroom on the plane. Long flights suck for anyone, the extra few bucks for that comfort for seven, eight or even 12 hours is the one thing I wouldn’t go without.
  • Stay in a hotel. Having a quiet room is a must have for rests when traveling.
  • Buy first class train tickets. Trains in Europe are extremely bumpy and horrible for someone with motion sickness. Spend the extra 20 euros and get a seat in a first class car. Your ride will be so smooth you won’t even know you’re on a train.
  • Public transportation drains a lot of energy for me. Cabs in Europe are inexpensive, easily accessible and they’re everywhere on city streets. So avoid the mental drain of subways, streetcars and busses by opting for a cab instead.

3. Tours:

Private tours are a good option for someone traveling with a brain injury. It’s more intimate and the less people around the better. Half-day tours are also an option.

4. Flying:

My best advice is a good pair of noise canceling headphones and an eye mask. Also avoid alcohol on the plane.

5. Breaks:

Jet lag is the worst! Having never traveled to a time difference of longer than two hours, the six-hour difference will affect anyone. As mentioned in tip #1, plan breaks into your trip. Every day I had two or three breaks and some included a nap.

6. Alcohol:

Depending on where you travel, alcohol will be different than what you’re used to, if you drink. For example, wine is a lot stronger in Europe. In Portugal, the minimum alcohol percentage in wine is 23 per cent. I’m not a big drinker, but on vacation it’s hard to say no to Portuguese or Spanish wine. For some reason I was never hungover after a glass of wine with dinner. If I have a glass of 12 per cent wine in North America, I’m hungover for a few days. In Europe, I woke up feeling fine. But everyone is different, so if you choose to drink, pace yourself and know your limits!

7. Coffee:

The coffee is Europe is also a lot stronger than North America. Instead of a mug of coffee, they’ll give you an espresso shot by default, which packs a massive punch. My first cup had me shaking for half a day. Start slow with it if you’re not used to espresso.

8. Walking:

Having never been to Europe, the last thing I was thinking about was the cobble stone sidewalks. I didn’t realized how slippery they would be, and as a result, I was constantly looking down and focusing on not slipping. What helped was a good pair of running shoes and not rushing around. You can’t change the way the sidewalks are built, so just take your time.

9. Communicate with your travel companion:

Make sure to travel with someone you trust and who knows your situation. You need to communicate with them when you need a rest.

10. Water, water & lots of water!

Seriously, I can’t stress this enough: drink lots of water.

Traveling with a brain injury doesn’t need to be a scary thing. If you plan for it, take your time and rest you’ll be able to relax and enjoy the full experience. I never thought I’d be able to travel and now I’m already planning my next vacation!


The Blue Helmet Girl is a woman in her mid-twenties who acquired a TBI three years ago, and after three open head surgeries, has recovered remarkably. With a high level of organization skills and self-awareness, she hopes to help others by sharing her unique story and strategies. In her spare time, you can find her hanging out with her dog, taking pictures or writing in her journal.
Follow her on Twitter @theBHjourney, on Instagram @bluehelmetjourney or www.thebluehelmetjourney.com

 

 

The Winter Months Warm-Me-Up

BY: JULIA RENAUD

It goes without saying, winter is here and so are the long nights that come with it.

As a post concussion syndrome (PCS) survivor, these long nights have special significance.

Back in the early months of my PCS, the sun setting earlier in the day was something I initially welcomed. I thought, ‘Great, now everyone else will enjoy very dim lighting as much as I do!’ But as the days dragged on, I realized this wasn’t necessarily the case.

Julia in her concussion glasses
The blog post author, Julia, rocks her concussion sun glasses.

People without brain injuries tend to turn on artificial lights sooner and brighter when the darkness comes, which is not great for anyone struggling with light sensitivity. In addition to extra artificial lighting, snow can be intensely bright during the daylight and the frozen ground only amplifies the already brain-shatteringly loud sounds of city life.

All of this left my head pounding, eyeballs bulging, morale crumbling and general hopes of feeling ‘normal’ again, fleeting.

Winter is beautiful, don’t get me wrong. I love embracing the quietness of the streets of Toronto during a powdery snowfall.

But my morale got pretty darn low that winter I was dealing with strong PCS symptoms. Through it all, I learned coping mechanisms which I hope may help others with their  brain injury winter woes.

Hopefully, this post will also put a smile on your face, and give you some extra courage to lace up your boots and settle in for Canada’s often-dreaded winter!

For this post, since I think these points should be read by everyone dealing with a brain injury, I’ve taken to point form for your quicker, less symptom-inducing reading pleasure!

Dog looking up while walking in the snow
Photo by Tadeusz Lakota on Unsplash

Laugh all you want, my concussion glasses helped me out a lot! People would tell me that I was making a fashion statement, and while they never mentioned whether it was a good or bad statement, the glasses helped my head so I decided to take it as a compliment. Win-Win!

Emotions 

If you were to take a general poll of what people want for their lives, the most common answer would most likely be, ‘happiness’. Happiness is something that can be easily taken for granted and, in its absence, can be extraordinarily missed. In addition to the physical symptoms that come with a brain injury, it’s important to remember there are also emotional symptoms that can accompany feeling as crummy as an over-baked batch of cookies. Here is a list of some tricky emotions I’ve experienced and ideas for how to combat them:

Loneliness and Isolation 

  1. The OBIA Peer Support Program connects a person living with brain injury (or a caregiver) with a trained peer support mentor. You then receive about an hour of peer support over the phone or email for a year. (Please expect about a two week response time when initially contacting the program.) Find your local contact for the program, HERE and if you’re in Toronto contact BIST at: 647-990-1484 or peersupport@bist.ca.

2. Monthly Brain Injury Support Groups at BIST:

3. Online Support Groups & Resources Outside Toronto

4. Other Options

  • Reach out to friends and family for support – whether it’s by telephone, email, video chat or visits – whatever you can handle.
  • Go for a walk, and have nice conversations with others who are out and about. Ask if you can pet a passerby’s dog.
  • Talk to animals – squirrels, rabbits, raccoons, cats, whatever tickles your fancy, it’s generally not seen as strange unless the animals talk back! (I love to compliment very robust squirrels on how amazingly prepared they look for winter.)
  • Make your home cozy and retreat-like (I have a string of warm yellow LED holiday lights that I lovingly refer to as my ‘snow lights’. They light up the corners of my apartment without providing too much light. Usually these are the only lights I have on in the evening and, who are we kidding, late afternoons too!)
Powder day! This snowboarder walks from the slopes to the bus stop
Photo by Jonny McNee on Unsplash

Ruminating?

  • Meditate (It can be tough at first but give it a go!)
  • Try out some yoga, chair yoga is always an option and BIST’s February Social Learning is about Chair Yoga!
  • Listen to a podcast or stand-up comedy.
  • Read or listen to a good book. The one that really got me through my toughest winter was, ‘Stir: My Broken Brain and the Meals That Brought Me Home’ by Jessica Fechtor.
  • Want to read about someone else’s experience? Here are two brain injury book lists with plenty of reading options:
  • Author Shireen Jeejeebhoy has written ‘Concussion Is Brain Injury’ and also has a blog.
  • Prefer a book with pictures? ‘A Caged Mind’ by May Mutter is a coffee table book that beautifully combines photography, body painting, and writing to tell the stories of the PCS survivors within its pages.
  • Make crafts or artwork (watercolours, drawing, colouring, DIY projects, card making, etc.)
  • Make an indoor garden or add some potted plants to your space.
  • Start a gratitude journal, this is an amazing way to focus on the best parts of your day, even if your gratitude is as simple as having eaten a tasty bowl of cereal, embrace the good wherever you can!
  • Take a bath and do your best to relax.
  • Listen to music (something that makes you happy.)
Julia's drawing of a house plant
In my search for less adrenaline-producing hobbies, I took up drawing this year and I’m proud to say I’m improving! This is one of my house plants.

Bored?

  • Try cooking or baking something new (There are also tons of no-bake recipes out there and BIST’s Mind Yourself With Alison has some ideas of her own, HERE.)
  • Do a puzzle.
  • Learn something new – Guitar? Chess? Knitting? Sewing? Creative writing?
  • Play a board or video game (or part of one if necessary.)
  • Go outside and make snow angels.
  • Listen to Ted Talks.
  • Venture to your local library – the Toronto Public Library has tons of free programs which may peak your interest.
  • BIST’s Mind Yourself with Alison has more ideas how to relieve post-ABI boredom, HERE.

Afraid of slipping and falling outside?

  • Get some boots with a deep-treaded sole or use grip attachments to the soles of your existing shoes / boots. Shopping for something new or curious how well your current boots hold up? The University Health Network rates boots by slip resistance, HERE.
  • Use walking poles.
  • Check the weather and plan your outings accordingly.
  • Layer with hats, hood or a helmet. You can also try out a helmet hat – a special helmet that looks like a hat. You can find them by searching online for ‘helmet hat for brain injury’.
  • Walk with a buddy to help keep you on your feet (preferably someone without a brain injury.)

Worried about saying what you mean, and meaning what you say?

  • Try pausing to check in with how you feel before engaging in a new conversation.
  • If you’re feeling exhausted, it may unintentionally come across as anger or frustration in your voice. Take a deep breath, acknowledge how you’re feeling, and get yourself in a good frame of mind before answering someone.
  • Already said something you didn’t mean? It’s okay. Apologize and try again to say what you wanted, even if it takes a few attempts.
  • Can’t find the word you’re looking for? Try using a synonym or describe the word and ask if the person can help you pinpoint the word you’re looking for. If you can’t think of it, move on and try to carry on with the conversation anyway, odds are the word will pop into your head once you’re no longer putting pressure on yourself to find it.
The author Julia holding her chocolate mousse cake
Excited to taste my Triple Chocolate Mousse Cake! Since it’s made in three steps, you can do one step each day and make it in three days. Also, notice my snow lights in the background.  

Physical

Having a brain injury can be exhausting! Before my injury, I never truly appreciated the amount of energy the brain uses to process information and consequently react. During conversations, watching people gesture, processing their words, and attempting to come up with an appropriate and timely response (ha, yeah right!), seemed to drain all of my energy. Active listening became inactive listening even though I was trying my very best! Talking on the phone was a slight improvement but still very difficult. I felt isolated and alone.

When I could, I would get my partner to take me to the countryside where there was less city commotion going on and I could get some fresh air. Being a passenger in the car while the sun was low in the sky and the sunlight flickered through the trees was awful and triggered some seriously cruel headaches, dizziness and, worse, nausea. Even upon arrival to the middle of nowhere, the snow was mind numbingly bright, and I was afraid of slipping and falling (but at least this was less likely in the snow than on the water-covered ice that coats the city). The energy that it took to lift my feet just a few inches higher were monumentally exhausting. I was losing hope of ever feeling ‘normal’ again.

Accept that you might not be perfect and that’s ok

Because all of these tasks required extra processing and therefore a whole heck of a lot more energy, my personal hygiene suffered. The amount of energy it took to take a ‘simple’ shower required an hour long recovery. Shaving? I had poor balance and shaky hands, so forget that. Scrubbing my body? Not possible, no energy for that either. Closing my eyes? Sure, if I wanted to risk a tumble out of the shower (I can’t tell you how many times the shower curtain saved me from crashing onto the floor). Washing my hair into a lather? Only possible if all of the stars aligned.  Did I feel gross? Yes, but I felt gross all of the time from my symptoms so it didn’t make much of a difference to me.

Blinding snow?

  • Get a pair of sunglasses that make you feel wonderful. Quick tip: when buying sunglasses, try out different colours of lenses and styles of glasses, your brain may be more pleased with some than others. If you’re still having trouble finding a pair that both you and your brain like, see an optometrist, ideally one well versed with head injury.
  • Time when you go outside.
  • Utilize the natural light/darkness while you can.

Flying snow yet another thing to process?

  • Time your outings according to the weather.
  • Wear an eye mask or anything cover your eyes while being a passenger in the car.
  • Slow down so you can take time to process what you need to.

Taking more energy to walk around?

  • Take lots of breaks! (Ever wonder what the view is like from every bench on the block? Wonder no more! Sit down, relax, and enjoy the moment.)
  • Take public transit.
  • In Toronto, the underground PATH can be great for avoiding slippery winter conditions but comes with its own challenges such as fluorescent lighting, lots of people and the possibility of getting lost. For your information, here’s a map.
Picture of a small knitted snowperson

At least winter also brings some cheer and cuteness! If you’re feeling crafty, you could try making something like Frosty!

Notice how it’s louder outside once the ground is frozen?

  • Layer your ears like an onion (hair, hat, hood, another hood, and another hood – whatever helps.)
  • Wear earphones or earbuds with a visible cord. I wore ear buds with no sound coming through to block out some of the noise of the city. I did this instead of ear plugs so others could tell that I wasn’t purposely ignoring them.

Is shovelling snow stealing all of your energy?

  • The City of Toronto has a snow clearing service for people with disabilities and / or people who are older than 65. Find out more about the program, HERE. If you need help with the application, contact BIST at: 416-830-1485 or info@bist.ca.
  • Ask for help from friends, families or neighbours.
  • Hire a laneway clearing service.
  • Shovel a little bit at a time.

Weather patterns getting you down?

When I was in the thick of my head injury, the weather often dictated how my head felt. Any big pressure swings and it would be a tough week with migraines and fatigue. I know I’m not the only one out there who has felt this, so if you do too, here are my simple tips but sorry, unfortunately I can’t control the weather.

  • Check the weather days in advance.
  • Plan your schedule according to the weather.
  • Pace yourself extra diligently to get back to your baseline.
  • Be kind to yourself!

Thanks for Reading

I hope that you smiled at least once while reading this, even if it was just to laugh at how silly my concussion glasses look on me! I rocked that fashion statement for about a year and a half, so trust me when I say that it doesn’t bother me.

I look back at that picture now, a few years later and, I like to think a few years wiser, while I’m still learning from my PCS , I’m proud of myself and grateful for how far I’ve come and for how much I’ve learned along the way. I hope some of my experiences resonate with you and that some suggestions may help, even just the slightest bit.

Winter is just a season that comes every year. Sure it can be cold, darker and brighter, magical and miserable, but it’s really not so bad. It always helps me to remember, that it’s not what happens to you, but how you handle, learn, and grow from it that really counts.


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!   

 

 

 

 

 

A year with a different brain

A version of this article was originally published on March 18, 2017

BY: ERIN MOORE

On March 18, 2016 my husband Davin sustained a concussion.

I write this on the one year anniversary of my husband’s injury. It brings an incredible mix of emotions. It has been the hardest year of our lives; financially, mentally, physically and emotionally.

We have cried more together this year than we have in our almost 20 years of time with each other. We have been in dark places this last year, individually and side-by-side. We have battled this brain injury together, but alone.

Family walking in sunset

Concussions are invisible to most. The terms the ‘walking wounded’ or the ‘invisible injury’ have been given to concussions because the majority of people surrounding someone with a concussion aren’t aware of what that person is braving, or managing, or being held captive by. I’m not writing this post to educate you on what a concussion is, or to understand post-concussion symptoms, you can go google that.

I’m going to share with you my experience – as a wife, a partner and a best friend of someone who has been battling concussion symptoms for one year – with no win in sight, and still far away from the finish line.

It was three months into Davin’s concussion that I really started to feel the first feelings of being scared. Davin had concussions before, and I had seen at times some very bad symptoms from it. But they all cleared up relatively quickly and he became his regular self again. Last June his neurologist told us to expect at least a year for recovery, maybe longer. This news shook him, and me, and it set off a whole new dimension for us.

Up to this point, it was almost like I had watched Davin run into a brick wall over and over again, trying to make strides towards a little bit of improvement but getting stonewalled over and over again. After the neurologist’s prognosis, Davin stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim. I could see him fall into a darker place, faced with the reality that it was going to be a long time until he got better, and no one could tell him how long it could be or what he needed to do to get himself healthy again. The frustration mounted, when all the therapies, practitioners, counsellors, specialists, supplements, food eliminations, (you name it, we tried it) failed to work.

Photo of a family standing at a beach during winter

Sure, some people may have seen some snippets of Davin’s behavioural responses to his concussion, but they didn’t get the full picture. Most people saw the same guy they always knew, only off work, and unable to do his usual athletic and social activities. That’s what makes it really hard for people to understand what happens to someone when they are living with a concussion. There is a side that is invisible and unseen by most, even close family members. It’s uncontrolled, reactive, irritable and mean.

I learned quickly that I could never take anything that my beloved dished out at me personally. Davin – the true Davin – did not want to react to situations the way he did but he lacked the filter or response to slow down, think and choose his words or behaviour before acting them out.  The remorse and shame that follows an episode is equally hard to watch, as seeing Davin in emotional pain scratches and slices my heart over and over again. As his partner, there are so many times I felt completely helpless, and at times,  still do, as though I’m stuck in the path of the concussion’s unpredictability.

The cycle of a concussion is vicious. It first brings physical and mental pain, then triggers emotional pain, which trigger symptoms, which trigger depression and so on.

Ah that word – depression.

I’m scared of that too. A common byproduct of a concussion is this whole other layer of depression and the inability to balance emotions. I again played spectator to Davin as his depression started to guide him, as his clarity on life was now being mismanaged by a giant bruise on his brain and a chemical imbalance. His brain wasn’t firing like it used to and tasks that those with uninjured brains take for granted – like going to grab some groceries – were daunting and debilitating, resulting in frustration and anger. This would then trigger intense fatigue, malaise and depressive states.

How would you cope? Eventually we learned the patterns and together started to identify the triggers. We figured out a management plan and I stood by my man and let him just be, as he needed to be in that moment. No judgement. No resentment. Just love.

By this point we were deep in the summer months in Whistler, B.C. We had decided moving to Toronto was the best choice for us. We were down to one income, with Davin’s Short Term Disability payments ending at the end of June, we had both kids in daycare and we were starting to see for the first time in our adult lives that if we continued like this we were going to be in some financial strife quickly.

Managing his medical and disability applications were also incredibly taxing on Davin, and in September I took over full management and advocacy for his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and which would drastically turn things around for us. But, after six months of waiting for a decision, they denied Davin’s claim. We appealed. They denied us again. We appealed again, and one year later we are still waiting.

So now what?

How do we keep going when the concussion and depression continue to hold my husband in captivity of who he once was. How do we raise our kids so they understand what has happened in the last year but remain resilient to times that have been trying for them, and us. How do we show them that we are strong and brave and that we will get through this? That concussion won’t beat us.

I can tell you what we did, and do everyday, to do our best to stay above the concussion and depression. We allow us the power to choose.

Whistler wasn’t working for us at that time, so we chose to leave and went on an adventure, that was healing.

We chose to move across the country to be closer to family for support and for filling our heart up when we needed it.

We choose to ‘move slow to move fast’, words spoken by a wise confidant that have made all the difference for us.

We choose to do only a little bit, and not all of it, and manage each moment for what it is.

I chose to not go back to a job that would take me away from my family 40+ hours a week.

We have battled this brain injury together, but alone

I chose to start a business to create a different path for our family where we can create and grow in line with the pace that Davin’s brain needs to heal.

I have days where I feel so alone, that no one truly understands what it is like.  I have days that are really hard. But despite the torture this last year has been, I have so many things I am grateful for that would not have come to be had this concussion not happened. I have learned, like to no level I’ve known before, what it means to be patient, to have compassion, to listen, to be brave, and to be present.

It’s taken me a long time to open up and allow myself to share the truth of my experience and allow myself to be vulnerable. I hope these words resonate with one of you readers.

Share my story.

Learn about concussions and talk about it, and keep talking about it. More awareness needs to be raised, more understanding about what those who suffer are going through. We need to show more compassion for those that live each day in a fog of their brain injury.  We need more support for ways to manage and cope for those with the injury and the people that are by their side.


Erin is mom to two amazing children, and wife to an incredible husband. She has a love for travel, yoga,and bringing people together on issues that matter.