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.
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.
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.
My best advice is a good pair of noise canceling headphones and an eye mask. Also avoid alcohol on the plane.
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.
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!
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.
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.
It is the time of the year where the days are shorter and your feet are colder. But upon a rainbow of snow is one good thing, Valentine’s Day!
The formal celebrations of this Christian holiday go back centuries. In fact, St. Valentine was a real person and is the Patron Saint of Epilepsy.
Nonetheless, Wikipedia has let me know that it was in the 14th century that the date of February 14th gave rise to courtly, or chivalrous, love (think knights going on battles for their ladies’ honour) which has now flourished above any expectations.
Seven hundred years into it, Valentine’s Day is still here, in all its commercial manifestations. But at its root, the day is about love. It does not matter who you love, or what being brings an impression of collective guidance in world, but love is the answer. Even if only for a day.
There’s a growing trend to celebrate yourself on Valentine’s Day, so whether you’re focusing on romantic love with a partner, or are treating yourself to the self care and self love you so deserve, here are some tips to help you out on this most romantic day:
Add some scent to your life:
If scents are your thing, make it feel like a day of celebration and encase yourself in a lovely aroma. Scented candles such as the ones below can add a lot to your mood. According to scentsyblog.com:
Cinnamon – adds spice to your day
Jasmine – smoothes out tension with its rich and sultry aroma
Orange blossom – calms the nerves and / or awakens the mind
Rose – allows romance to flourish through your thoughts
Sugar – a sweet tease making for a sensitive touch
Vanilla – completely comforts the soul.
Now is a good time to accept the role of what we determine as essential for consumption. According to Herbazest.com these foods can give you a self love boost:
Cacao – of course, chocolate on Valentine’s Day! This will be helpful to increase your energy level. If you want to stay away from eating chocolate, stores like Bathbodyworks.com (in my local mall, as well) sell the scent, body butter and bubble bath.
Cherry: I love this one, I am very interested in picking up the Japanese Cherry Mist they have at Bathbodyworks.com. But, for consumption purposes, the cherry is chock full of Vitamins A + C, both of which will strengthen the immune system. While it’s not cherry season per-say, there’s always the more affordable frozen variety.
Passion Fruit: I was quite delighted to see this! It has therapeutic properties believed to relieve anxiety and lower blood pressure! The smell is also great, it may psychologically boost my energy, but it could be that it removes my tension which frees up my mind!
After a brain injury it is so important to take care of the mind, as well as the body. Mindfulness can clear your thoughts of negativity and bring back the opportunity to calmly observe your surroundings. The following information comes from www.psycom.net:
The simple, automatic luxury of breathing is the fundamental presence of your mood and deserves your utmost attention. Using a slow, controlled effort, close your eyes and take a breath in through your nostrils, feeling your stomach rise (not your chest) and out through your mouth (or nose). I’m taking a time warp back to my Pilates classes! This calming acquisition has potential to soften any tension in your muscles and lighten the weight of your brain.
Listening is a great meditation tool, since when you’re in a peaceful state of mind, even disruptive noises can be calming. Even if you have conversation around you, or the television on, being in a peaceful state allows you to lightly contemplate meanings and suggestion, observing without anxiety or tension.
Finally, sense the world by using everything that is available to you. Not only are you able to look before you touch the heart-shaped chocolate, but listen to the crinkle as you open the foil, finally take a sniff before you taste that ultimate chomp!
If your brain injury allows it, two books I’d suggest are great for getting in the mood for love are: Jennifer E. Smith’s The Geography of You and Me, about people in a long distance relationship and (of course) Jane Austin’s Pride and Prejudice, set in early 19th century England. You can find other suggestions here and here for your romantic reading pleasure.
Shannon lives with her fiance Christopher and baby girl Annabelle in Oakville, Ontario. Shannon and Christopher both have brain injuries and met each other after a BIST monthly meeting in Toronto in 2017. Thanks for the help and support!
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!
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 email@example.com.
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.
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!)
Meditate (It can be tough at first but give it a go!)
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.)
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.)
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.
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.
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.
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 firstname.lastname@example.org.
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!
This month I’m adopting a new heading to make life a smidge easier. If you’re not feeling up to reading very much today and just want the key points, scroll to the bottom of this post for the QUICK FACTSsection. If you prefer the more detailed version, stick with me and jump right in!
BIST’s November Community Meeting was about essential oils (EO) and their role in recovery post-ABI with Rose-Anne Partridge.
Partridge is a best-selling author, former radio show host and iTV personality. She became interested in essential oils nearly two decades ago and took an even deeper dive after her son was diagnosed with a rare genetic condition. Partridge went on to become an advocate and wellness coach for those with special needs and is the founder of Real Life Changes, Families for HOPE Network, and Oily Masters. If that’s not impressive enough, she continued to broaden her knowledge about brain nutrition and obtained her Brainwave Optimization certificate.
What Are Essential Oils?
Essential oils are the ‘life blood’ of a plant. They are highly volatile which makes them very fragrant. Named after its plant of origin (i.e. lavender oil), they are termed essential because “represent the very essence of odour and flavour of a plant.” Oils can be taken from shrubs, flowers, trees, roots, bushes, fruit, rinds, resins, and herbs. Best when extracted through steam distillation, these oils consist of over 100 natural organic compounds and never go bad if they are pure.
A word of warning, the EO industry is not regulated. It is important to read labels, the word ‘pure’ on the label can mean only five per cent of the bottle’s contents are actually EO. This means that you could be paying for a bottle mostly composed of fillers. For this reason, Partridge suggests looking at the price. In this case, you get what you pay for.
Why Use Essential Oils?
People use EOs for their calming effects and because they find the aromas pleasing, but EOs can also support your body systems, including the skeletal, muscular, circulatory, endocrine, respiratory and immune. In addition, they can support your hormones, brain health, body weight health and emotions.
Partridge says EOs have the ability to penetrate through the cell membrane and transport oxygen and nutrients into the cell, helping you heal from the inside out (with the purest EOs). They can also penetrate the blood brain barrier in only a few seconds.
How To Use Essential Oils
Topical (rub on the skin)
For this method, test on a patch of your skin before committing! The best place to start is on the soles of your feet where the skin is the thickest, this will slow the diffusion of the EO into the skin. If your skin becomes red, coconut oil can help.
You can also apply EO behind knees, temples, and wrists throughout the day, all you need is one drop!
Apparently using lime EO in guacamole is a game changer! You can find recipe ideas, here
3. Diffuse and inhale
This method can be most effective because doesn’t have to pass through the digestive system. Diffusers seem to be all the rage these days but if you want something portable, you can use an EO inhaler or a diffuser necklace.
How Do Essential Oils Work?
When you inhale an aromatic substance, the olfactory neurons in the nasal cavity register the scent to the olfactory bulb where it is then linked to the limbic system of the brain.
Patridge said that studies have shown that when EOs are applied topically, they reach the bloodstream in 26 seconds. When inhaled, they reach the heart, liver, and thyroid in three seconds!
The effectiveness of EOs depends on their purity as well as the oil itself. Partridge mentioned she finds certain oils to be more effective than other times. There are also different grades of oils:
EOs last for about three to six hours in a healthy body so, typically, they are reapplied every few hours.
Some EOs use carrier oils to slow the entry of the EO into your system, allowing it to last longer. These fatty oils have larger molecules that the EO must squeeze through to get into the skin. Examples of carrier oils are olive oil and coconut oil. Many EOs contain carrier oils, but if you’re looking to mix your own, you can buy fractional oil at your local health food store, which stays liquid as opposed to some cooking oils.
Why Are Some Essential Oils More Costly Than Others?
When looking into buying EOs, you’ll notice that not all EOs are created equally, especially when it comes to the price. The higher the grade/purity of the EO, the more you can expect to pay. Also, plants grown for EOs should to be harvested at their peak and some plants take much longer to grow than others, which can mean a higher cost. Finally, not all plants have the same amount of oil.
For example, to obtain one ounce of rose oil, you need 60,000 rose blossoms! Buying a blend of oils is one way to get a variety of EOs without needing to pay the high price for each oil individually. A blend of EOs can be much cheaper, but it also means that it won’t contain very much of the more costly oils.
Are Essential Oils Safe to Use?
Yes, as long as you use them safely! Here’s how:
Always test a patch of your skin with an oil before using a new EO and watch for any redness.
When using EOs on children, dilute the oil, children have more permeable skin, which absorbs the oil more quickly.
Never use EOs on the eyes, nose, ears, nor near the eyes.
Be careful with using citrus EOs if going in the sun (ie. lemon and grapefruit EOs can make you more prone to sunburn).
If you have seasonal allergies, you may react to the oil of plants that you are sensitive to.
Brain Health and Essential Oils
Partridge suggests getting the most bang for your buck by mixing 10 drops each of vetiver, lavender, and frankincense, with a carrier oil.
To help with your head injury symptoms, here are some other EOs that may help you out:
Exercise and Essential Oils
It’s well known that exercise is great for the brain, but did you know essential oils can help your body with exercise as well? If you need some motivation to get off the couch, peppermint oil which can boost your energy, relieve muscle soreness and help to decrease inflammation. To help reduce pain, try wintergreen and fir oil.
QUICK FACTS about Essential Oils!
What they are: Natural oil taken from shrubs, flowers, trees, roots, bushes, fruit, rinds, resins, and herbs.
Why use them: Relaxation, pleasing aromas, support your body systems (skeletal, muscular, circulatory, endocrine, respiratory, immune systems, hormonal), brain health, body weight health, emotions, spirituality and to aid with stress!
How to use them:
How they work: Effectiveness depends on purity and the oil itself. Not all EOs are pure (careful, it’s not a regulated industry!)
Why the cost difference: Plant type, grade/purity, ease of growth. Too expensive? Try out a blend!
Always test a patch of your skin with an oil before using a new EO – watch for any redness!
Never use in the eyes, nose, ears, nor near the eyes.
EOs and brain health:
Most bang for your buck: Mix 10 drops each of vetiver, lavender, and frankincense, with a carrier oil (ie. coconut or olive oil – fractional carrier oil is best so your mix will stay liquid in the cold!).
Exercise and EOs: For motivation use peppermint oil to boost your energy, relieve muscle soreness, and help to decrease inflammation. To help reduce pain, try out wintergreen and fir oil.
Best when extracted through steam distillation.
Consist of over 100 natural organic compounds.
Never expire if they’re pure! Look at the price – you get what you pay for.
EOs last for around three to six hours in a healthy body so, typically, they are reapplied every few hours.
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!
Did you know? Community Meetings are now called Social Learning
We’ve changed the name of our Community Meetings to Social Learning to reflect what this program is about: Socializing and Learning.
Want to Socialize?
The first part of our evening is about socializing – come out to meet new people or catch up with old BIST friends.
Want to Learn?
The second part is about learning! Listen to a guest speaker present on a topic relevant to brain injury, with time for a question and answer period.
Come for just part of the evening or stay for the whole thing – the choice is up to you!
Like our Community Meetings, our Social Learning sessions are open to everyone: people living with brain injury, families, friends, professionals and anyone who is interested in ABI.
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.
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.
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.
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.