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.
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!
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
- 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:
- ABI Support Group – for people living with ABI ages 27 and up.
- Women’s Support Group.
- Young Adult Support Group – for young adults with ABI ages 17 – 26.
- Parent Support Group – for parents of people with ABI, ages 12 and up (including adult.)
- It doesn’t have to be a support group! If you’re in Toronto, BIST has a variety of programs such as Social Drop-Ins and monthly Community Outings. Find out about them, HERE.
3. Online Support Groups & Resources Outside Toronto
- OBIA runs an Online Concussion Support Group for those in more remote areas.
- Contacting your local Brain Injury Association can help point you in the right direction for supports in your area. Check out this list of the brain injury associations serving each Canadian province, HERE.
- Women living with brain injury can access Pink Concussion’s Online Support Groups.
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!)
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.)
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.
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.
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!
