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

 

 

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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. 

7 years with my husband’s severe TBI

BY: THERESA McCOLL

Where do I go from here?

There have been nights I waited for Norm to walk in the house at 5 p.m., when he used to finish work. But yet another day and night go by and no one walks through the door.

On Thursday April 28, 2011 our lives changed forever. Norm was in a very serious accident. The pick-up truck he was driving ended up underneath a tractor trailer.

As the days go by I am ok, the best I can be given the situation. But when the night comes, it’s a different story. The feeling of loneliness sets in, and without knowing it, tears start rolling down my face. I can’t find the off-switch.

I keep wanting to wake up from this nightmare, but it’s our reality. For over seven years, this has been my new normal. I find myself planning my life and his at the same time. It’s really scary knowing that I have to make decisions about my husband’s health.

I have learned how to drive a mobile van and how to secure Norm in place in his wheelchair. We go to the movies, dinner and to Toronto to check out places like the Hockey Hall of Fame. I am trying to give Norm a normal life even though I know he won’t get any better.

It feels like I have put my life on the back burner and become a full time caregiver.
I’ve gone back to school and took a Personal Support Worker course to get insight to help Norm in his new life. I have taken training courses through the Ontario Brain Injury Association (OBIA), which have helped.

I am becoming more involved in Norm’s therapy. I assist Norm’s therapist with his treatment, such as assisting him in the therapy pool as he walks from one length of the pool to the other.

But I keep wondering  what happened to the golden years we worked so hard to enjoy? How am I supposed be a loving wife when I am living on my own?


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE

Understanding my post traumatic brain injury nightmares

BY: ALYSON ROGERS

I have two recurring nightmares. In the first one, I’m on a basketball court and I am 16-years-old again. I’m playing my old point guard position. I am scared and dribbling the ball cautiously because I am not supposed to be here but my coach put me in the game. I’ve never dreamed long enough to find out if I make it through.

My [nightmares] are the manifestations of the trauma in traumatic brain injury - Alyson Rogers

In my second dream, I’m on a rollercoaster at a theme park I visited often as a kid except I’m my 26-year-old self. I know it’s not safe for me to be there and I’m scared of how I will come out at the end of the ride. In this dream as well, I never dream long enough to find out.

It’s taken me years to realize my dreams are reoccurring. I understand now they are related to the part of brain injury I don’t like to talk about: how my brain injury impacts my mental and emotional health, how the act of being injured in itself is traumatic.

After a traumatic event, it’s common to have nightmares about the specific event or the circumstances surrounding the event. My dreams make sense, they are the manifestations of the trauma in traumatic brain injury.

My initial brain injury occurred during a basketball game. In the basketball dream, I’m the same age, playing the same position and in the same gym where I acquired my injury. I have the same coach who encouraged me to play despite having a brain injury.  I know I shouldn’t be on the court and I’m afraid someone is going to hit me with their body or the ball, but part of me is happy to be there.

Despite my brain injury, I sometimes test the waters with new and old activities such as riding a bike, zip-lining and jumping rock to rock while hiking. Sometimes I do things I know I shouldn’t, such as not wearing a helmet while biking or rollerblading. Despite my willingness to test the waters and tempt fate, I would never try to go on a rollercoaster again. This is a former love that would likely cause significant damage to my brain and potentially kill me. It makes sense I have nightmares about being on rollercoasters.

After living with brain injury for ten years, I am still learning new things. This week, I learned I have recurring nightmares from the traumatic event that was my TBI.


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

Why I spend (most of) my weekends at home after brain injury

BY: ALYSON ROGERS

A brain injury can come with a variety of symptoms, from visual disturbances to changes in personality.

I have a diffuse axonal injury – a fancy term for damage to tissue in multiple regions of the brain – and the most significant symptom that comes with such a fancy term is fatigue.

When fatigue is present at all hours of the day, down time is precious. I work full-time, and anything beyond that requires a lot of thought, caffeine and an understanding that I need to be in bed by 9 p.m.

Unlike other symptoms of brain injury, fatigue is predictable: if I’m not at work, I’m probably at home. I may leave the house for a few hours on a weekend, or not at all.

My friends often ask what I do when I stay home, how can I stay occupied for all of those hours?

picture of Alyson's home: a picture on the wall of a door with a pillow on a white table that reads 'live, laugh, love' a coffee pot, mug and flowers on a wooden table. Coffee cup reads 'go away I'm reading'
PHOTO: ALYSON ROGERS

My days at home start with the relaxation essentials: my diffuser and candles. Trust me, whether you want to feel relaxed, energized, renewed, happy or sleepy, there is an essential oil and candle for that. I take an opportunity to stay at home as one to take care of my body and feel good. This means alternating between sipping tea and water while I light up the diffuser and candles.

The reason I stay home is two-fold; I’m staying home because I’m exhausted and I’m staying home because I need to rest up for the week ahead. The more brain injury symptoms I’m having, the more likely I am to be on my couch.

Essential oils
PHOTO VIA PEXELS

While I spend some time watching movies and television, I can’t sit for hours doing this. My favourite activity when Netflix is off is reading. I usually have a lot of books on the go depending on my mood, including crime books, academic reads and something light, like Mindy Khaling. My other favourite activity is Sudoku, the extreme sport of the brain-injured. (On a side note: if you have any unused Sudoku’s from your newspaper, let me know!)

This down time has also given me more time to write. Beyond the BIST Blog, I also write for The Mighty and have contributed a personal essay to a feminist comedy book coming out in the summer.

Since I moved into a one-bedroom apartment and got an adult job, I have become obsessed with decorating (and redecorating) my apartment. I have decided that if I’m going to be spending so much time at home due to my disability, I’m going to make my home beautiful. I’m a big fan of fake plants as they are self-sustaining and do not care that I am a bad plant mom.

This may sound boring to the able-bodied as there are plenty more interesting things that one could be doing with their weekend. As a person with a disability, this works for me and ensures I’m able to show up for who and where I’m most needed.


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

 

 

 

What I learned from having a stroke at the age of 40

BY: JANET CRAIG

Although I usually post recipes I thought June being Brain Injury Awareness Month, I would talk about how I got here.

Back in 1991, when I was just 40-years-old (yes, you can do the math), I suffered a massive brain aneurysm. I am now turning 67 and even now when I speak to stroke survivors, I still get emotional. I was a healthy ski instructor, never smoked, did not take birth control nor had high blood pressure. I was bodybuilding with heavy weights and teaching skiing at least twice a week. So the bonus was, I was in great shape.

Having at stroke at 40

What I did not realize was that my mother had the same type of stroke at 37-years-old. Being Irish, she kept talking about the time she had the ‘spell’. My sister also had a TIA, a mini stroke, at 42 so definitely we were predisposed. This is another contributory factor, the hereditary card.

For the two months prior to my stroke I worked in a new job that I was struggling with that included a lot of travelling, driving and working all kinds of hours. I was single and dating so probably exceeding the number of drinks I should be having. I had a constant migraine, which sometimes I would think that I was just tired and I would ‘catch up’ on the weekend. I never consulted with a physician and later on, when I returned to work, realized I was self medicating.

Easter weekend I was teaching skiing at Mont Tremblant and had a migraine so severe I was vomiting throughout the night. In the morning I felt so tired and still nauseous. I tell people later the sensation of trying to move and I felt like I was literally was underwater.

Everything was an effort and my limbs wouldn’t respond. I finally made it to the chairlift but when I sat back, my head felt like it exploded. Fortunately for me the staff there are trained EMS services so got me into an ambulance where I was rushed into Montreal Neurological Institute, a leading research facility where I was diagnosed with having a  stroke and treated quickly. That is the only reason I survived.

In hindsight, all the signs were there but like most people, particularly women, I chose to ignore them.

In hindsight all the signs were there, but like most people, particularly women, I chose to ignore them - Janet Craig

I thought I was overtired, stressed from work and lack of sleep. Well of course I was. Not realizing that expression, stress kills, is actually true! What I did learn, the hard way, is to know your own body and be kind to yourself.

Be aware of the risk factors: oral contraceptives, smoking, obesity, high blood pressure, family history, high alcohol use and stress. Most women have very high expectations of ourselves and even though they are exhausted think that they will “catch up” on the weekend. Well you know the drill, you have to be the driver, the cook, the therapist, model wife, and housekeeper and lo and behold the weekend flew by and you are still tired!

Now women have more strokes than men and heart disease in general is hard to diagnose in women we have totally different systems than men. The prognosis is much better for recovery with new drugs available, more research and 10 centres for Stroke Prevention in Ontario.


After suffering a stroke at the age of 40, Janet left the corporate world to open a personal chef business, Satisfied Soul Inc. Now retired, she continues to enjoy her passions of cooking, creating and teaching people how to eat properly.