To anyone who has had a concussion, I hope this reminder encourages you in these strange times:
Having a concussion has prepared us for this pandemic.
Staying at home, self-quarantine and self-isolation are not new concepts to us. Following a concussion, we are told to rest and to avoid social interaction. We end up spending most of our time at home, alone, in bed. That is the definition of self-isolation, is it not?
Having a concussion has forced us to learn to be mindful of how we feel and to take care of ourselves, physically, mentally and emotionally.
We have learned the importance of eating healthy, drinking water and sleeping well. We know that while it is tempting to eat everything in sight while stuck at home, doing so is detrimental to our health and our recovery. Conversely, we know that fasting or drinking insufficient amounts of water can make our symptoms worse. We know that while it is tempting to throw a regular sleep cycle out the window when we don’t have to leave the house, that is also detrimental to our health and recovery. We also know that light physical activity can help with recovery and improve our mood.
We know that with a lack of social interaction comes a lack of mental stimulation. While avoiding stimulation is essential to helping our brains recover, we know how easy it is for our brains to lose important skills. We have adopted light mental activities to wake our brains back up before they get back to full capacity, and also to combat boredom. We know the limits of our brain functioning and have learned to respect those limits. We know what times of the day we can be productive, and for how long.
We have experienced the stress that comes with isolation and uncertainty. We have stayed home and felt unproductive for what felt like indefinite periods of time. We have dealt with amplified feelings of depression and anxiety, whether triggered by our circumstances or the brain injury itself. We have developed coping mechanisms and support networks to help us through these tough times. We have learned to see the light at the end of the tunnel, even if it feels infinitely far away. Most importantly, we have developed empathy for anyone who is suffering, which these days, is everyone.
None of this is to say that having had a concussion makes sitting through a global pandemic any easier. Knowing that, myself and countless others, have had this experience (multiple times) puts me a little more at ease, and gives me a greater sense of control of how I respond to each day.
I hope it does the same for you.
Stay safe, stay healthy, stay strong, and STAY HOME!
Nathalin Moy recently graduated with a Masters in Sustainable Energy Policy from Carleton University in Ottawa. She uses her experiences as a student with a concussion to support other students with concussions and advocate for better academic support systems. She can be found on Twitter @therealmcmoy
One thing about this pandemic, there has been no shortage of creativity taking place online. Shot with the entire cast socially isolating, the short musical,Cracked, is no exception.
Vanessa is a high-achieving but emotionally distant woman who has had a concussion. As per the musical’s synopsis, “Vanessa gets conflicting doctors’ reports via her personal injury lawsuit – the doctor hired by her insurance company says she is fine, but the doctor hired by her lawyer says she is not. She then has to figure out who to believe, how to determine whether her symptoms are real or not, and how to proceed going forward – before her case goes to trial.”
As a member of the brain injury community, I am glad there is something like this out there. This musical is truly unique. I am impressed with the production team’s creativity in composing their 16-minute mini-musical. Each cast member performs in their own living space, as is life right now.
A caution to all acquired brain injury (ABI) survivors that suffer from phonophobia or sound sensitivity, note that Vanessa sings with power and can definitely reach a high-C note.
Vanessa expresses very powerful thoughts after sustaining a head injury.
“Life as you know it is over.”
“Doctors say opposite things.”
“This is my life. It’s not a game.”
“I listened to them more than me.”
Vanesa refers to her lawyers, John and Chris, in the third song of the musical. She doubts herself throughout the process of recovery and pursuing a lawsuit. The pressure to make a decision is a very real and authentic experience of many ABI survivors.
The show asks the question of how a patient’s self-perception or sense of self-worth can be altered by the dramatic process of going through a personal injury lawsuit.
I think this concept is quite apparent throughout the performance. Vanessa has one line that I think all ABI survivors can relate to.
“The pain went away- wait, it’s back. I don’t know what’s real or fake. Am I fine?”
This rollercoaster of emotions, symptoms, pain, confusion, and uncertainty is absolutely a part of every patient with post concussion syndrome. The final song starts with Vanesa contemplating the concept of mindset. She consults reading material that suggests, “How you think you are, will directly impact your recovery.”
Vanessa has an interesting response.
“So what if I just decide I am better?”
Vanessa enthusiastically works through her opportunities ‘now that she is better.’ She can read books and visit her mom and her friends. She can return to work and excel in an environment that fosters a supportive community. I remember having the same thoughts during my recovery. I can resonate with the longing for relationships and contact with friends and family. After two and a half years of recovery, I was finally able to attempt reading again. I finished my first 200-page novel. That was a victory, a win.
Brain injury takes away so many luxuries I never knew I could miss. Like tying my hair up in a pony-tail. Surviving an entire day without a migraine attack. Meeting a friend at a coffee shop for a visit, an environment with loud noise and bright light.
Positive mindsets can be important for recovery. It is important to note that every single head injury is different. Every single path to recovery is different.
Cracked shows us one brain injury survivor’s journey. Vanessa’s journey is evidently painful, confusing and stressful. This is quite relatable. I personally cannot resonate with the concept that an instant change of mindset was the turning point in my recovery.
The Ontario Brain Injury Association (OBIA) provides their members with a Brain Injury Survivor Card. This card includes the following information:
NO TWO BRAIN INJURIES ARE ALIKE.
Symptoms of brain injury MAY include:
● Poor coordination or balance
● Slurred speech
● Impaired judgement
● Difficulty processing
● Communication difficulties
● Memory problems
● Hearing or vision loss
● Seizure disorder
This card can be used to communicate with others in public if the individual is experiencing a flare up of symptoms. Many ABI victims can appear intoxicated to others who do not understand their behaviours while in pain or experiencing brain fog or sudden memory loss.
The survivor card also states, “You are not alone.”
I find this comforting. Just as I feel comfort in knowing there are other ABI survivors out there writing musicals about their concussion experience.
I hope that Vanessa’s message sparks some motivation for those who are still in the thick of their recovery, to fight for a mindset that masters a positive attitude. I applaud the cast members of Cracked in their initiative to create awareness of this life altering injury in a fantastic expression of art and music.
Tickets are available until May 31. Buy them and watch HERE
One thing most of us have learnt during this pandemic: germs can spread as far as six feet when someone coughs or sneezes. They can land on surfaces, such as a doorknob, or in another person’s eyes, nose, or mouth. That’s why social distancing guidelines state we should be standing six feet apart to limit the spread of the Corona virus.
For people with Cystic Fibrosis (CF), social distancing has always been a way of life. Being close to others with the disease puts them at increased risk of getting and spreading dangerous germs and bacteria, a term referred to as cross‐infection. Not only are these dangerous germs difficult to treat, but they can lead to worsening symptoms and faster decline in lung function for those with CF.
That’s why it’s important for people with CF to stay at least six feet away from others with CF and anyone with a cold, flu, or infection.
I’ve listened to this audiobook, Five Feet Apart, a few times now.
Stella Grant— a teen living with CF — describes her experience living with chronic illness:
“Counting out exact doses of multiple medications. Being extra careful to not forget one. Careful to not accidentally overdose. Careful to take them at the specified time. Missing out on social events due to a flare up of symptoms. Going to the hospital because of catching a cold. … We’re basically doctors by the age of twelve.”
I feel this. All the work that goes into my fight with my disability. Chronic pain. Chronic fatigue. Chronic migraines. Chronic asthma. Memory loss. Aphasia. Photophobia. Phonophobia. Post concussion syndrome. Brain damage.
I can’t begin to understand what CF individuals have to go through. I don’t know their fight. But I can begin to connect with the things we feel. Like the isolation. The complicated relationships. The chronic everything.
Even if you don’t have a chronic condition, I still recommend reading this book.
We are all fighting in this pandemic. We can all begin to relate to those who need to always keep social distancing in mind.
We can all begin to see each other.
Hilary is a Toronto-based non-fiction writer and UofT master’s student. Hilary is recovering from TBI, PCS— and spends much of her free time on FaceTime with Isla, her baby niece.”
We are THRILLED to introduce our new writer, Hilary Pearson, who will be writing re-caps about our Community Meetings. Thank you to Julia Renaud for writing incredible re-caps for over 2 years – we’ll miss you and we wish you very well!
Hilary’s first re-cap is about our March Community Meeting – our first online Community Meeting – with the topic: Coping with Anxiety due to the COVID-19 Pandemic. Our speakers were BIST executive director Melissa Vigar; Michelle Diamond, Director, Case Management and Client Services at Function-ability Rehabilitation Services (and a former member of BIST’s Board of Directors); and Jenn Bowler, Clinical Leader of Allied Health who currently serves on the BIST Board of Directors.
BY: HILARY PEARSON
Like many of us, living with my level of disability usually means I am inside most of the time anyway, pandemic or not. I remind myself that I am a Quarantine Queen and I was built for this. Nothing much has changed for me. I miss seeing my family for our visits every few weeks. But on a day-to-day basis, I don’t have to worry about me and isolation.
I feel more empowered and equipped to help others right now. It’s the people who do not live with chronic conditions or disabilities that are struggling with the drastic change in daily life. Living in isolation sucks. But I went through that ‘this freaking sucks’ period a while ago, when I first realized that I couldn’t go back to work, I needed to stay home, I needed to rest, and I needed to prioritize my physical and mental health.
How do I stay safe?
The best way to keep safe is to practice physical distancing. Germs can spread as far as six feet when someone coughs or sneezes, landing on surfaces or in another person’s eyes, nose, or mouth. That’s why it’s important for people to stay at least six feet away from one another during this time.
Here are some physical distancing tips:
Wave to people instead of shaking hands.
Arrange for grocery delivery – this is hard to do right now. There are some volunteer resources that can also help with this and other grocery delivery options do not charge delivery fees. Find them, HERE.
Arrange for medication delivery. (Most pharmacies deliver for free).
If you need help getting groceries, medications or other necessities please call BIST at: 416-830-1485 or email email@example.com.
What do I do if I think I have Covid-19?
Check out the Government of Ontario’s Online COVID-19 Self-Assessment Tool, HERE.
Call Telehealth Ontario to speak to a registered nurse: 1-866-797-0000.
Call your Family Doctor (most practitioners are having phone appointments.)
COVID-19 Symptoms include:
As we know, this virus is new to humans and researchers are still learning about symptoms. It is agreed that common COVID-19 symptoms include:
pneumonia in both lungs
If you have a fever, cough, difficulty breathing, muscle aches, reach out to any of the above resources.
When the state of emergency was announced, I found myself taking the online Covid-19 Assessment Test daily.
The link below lists resources that can help during the Pandemic. BIST is updating this information as much as possible
If you need help accessing any of these services, please call BIST: 416-830-1485 or firstname.lastname@example.org.
Do you live alone? Go see someone else’s face.
My favourite face to see is of my 17-month-old niece. Isla sticks her face right into the camera and fills up my entire screen. She babbles about bears, elephants, pandas, reindeers, turtles, apples, cheese, bananas, blueberries, and everything else I pull out of my fridge. We played this game for two-and-a-half hours on day four of quarantine.
It is so important to stay connected right now. FaceTime is one of the most convenient tools for connecting with loved ones, especially if you live alone.
On Easter Day, my whole family joined a four-way call on FaceTime. We all stared at each other while eating our favourite ice cream. Definitely quality quarantine family time. This felt weirdly normal. I think the attempt at maintaining some form of face to face interaction is significant.
Of course, I would rather hunt for Easter eggs in my parents’ house with Isla and my siblings. But I didn’t feel as though Covid stole a family holiday from me. I plan to frame the picture I took of our Easter FaceTime call. It’s our new normal.
A speaker at the BIST community meeting said something that changed my mindset.
“How will I tell a story to my grandkids about how I made it through the pandemic? What’s a creative, funny thing I did to help me.”
This is the ‘story mindset.’
This concept stuck.
My brother, Daniel, insists on doing all the grocery shopping for our family during this pandemic. He shops and delivers groceries and supplies to three houses, in three different cities. Daniel wears a green face shield and blue surgical gloves.
We enjoy a physically distanced conversation, me on my balcony, Daniel on the sidewalk. I take a physically distanced selfie. Last time, Daniel launched a small plastic bag over my railing and onto my balcony. He thought I would like the sliced apples his wife packed for the drive.
The stress, disappointment and grief the world is feeling right now is in-describable, but there may be moments that will stick out. Pay attention to these moments, as reflecting on them can help get you through.
You can call BIST at 416-830-1485 to help with problem solving, resource finding or just to chat. We answer our phone Monday – Friday 12-4 pm.
Everyone has felt stress. There is good stress, like being excited about an event, preparing for it, blocking off the time, asking questions.
Then there is negativity in worry. Your heart is still palpitating, mind racing, yet your conscious is predicting an unfortunate end result.
Closely connected, positive and negative stressors often exhibit some of the same bodily responses. The difference is, good stress usually is welcomed. But, anxiety can be harmful to living your life.
It is likely by now you have heard someone say ‘these are unprecedented times,’ never before has the entire world had to guard against a virus.
The thing you have to do, is reach for the positive stress in this negative draw on life. I do not mean ignore it, still wash your hands and keep physical distancing, but see the good feelings that exist in society and how it encourages relief.
As you have likely heard, many of BIST’s programs have moved online. BIST is also available for Phone Support, Monday – Friday 12 – 4 pm at: 416-830-1485.
I attended the last session of the ABI Info Series, Compensatory Strategies during COVID-19, a webinar hosted by BIST executive director Melissa Vigar, with programs coordinator Ryan Natale, speech language pathologist Simone Friedman, occupational therapist Natalie Kalymon and David MacDonald, a partner at BIST’s Corporate Platinum Sponsor PIA Law, who spoke on the importance of communication.
It is a matter of fact, now more than ever, people are starving for communication. People all over the world are reaching out in song, with signs, shouting from balconies in order to have any kind of bond with their neighbour. Always keeping an acceptable distance apart.
Humans are social beings. I can see in my two-year-old’s mimicking actions that are often reflections, or in part reactions, of how she sees others behave. Right now, my daughter is staying with my parents who can take care of her better, and I am isolating alone in my condo.
But, I don’t feel alone.
I am happy with my Philosophy books, my channels (CBC is free to watch, at this time) on a TV App, and the communication I receive through telephone and Internet service. I walk to the store around my neighbourhood in Oakville, to get my exercise in; everyone is respecting the distancing. #WeAreInThisTogether
Not to say, there isn’t work to do! Lots of suggestions were prepared during the webinar, including both physical and cognitive activities to do on your own time. It might be effective to search out Apps that are available to help establish a good routine such as the Fabulous App, which you can read a review about HERE.
Personally, I am a news junkie, but I understand why it might be beneficial to limit yourself to only morning or afternoon. Suffice it to say, attending the webinar, was a nice reprieve. That’s my own little joke. Life is an opportunity to search inside and explore your feelings, everyone has an experience to portray.
It is nonetheless unprecedented, that the entire world, is imagining the same reality. Be flexible and always remain positive. #FindASolution
Shannon Schilling lives in Oakville and has a beautiful girl named Annabelle Lorraine, who does not stop smiling! Shannon is a life-long learner, who will be attending UTM again, because that’s where she feels the most connected. #StaySafe
Scammers flourish during times of crisis, and sadly the COVID-19 Outbreak is no exception.
People living with dementia and Acquired Brain Injury (ABI) may have slowed information processing abilities and other cognitive symptoms. This means that people living with these conditions – and those who care for them – have to be even more vigilant in protecting themselves against scams and fraud.
Risk of financial exploitation can increased if someone is grieving the loss of a loved one, living alone, and / or dealing with adverse health conditions. Older adults are more likely to experience more than one of these challenges.
How can I protect myself?
With funding from the Government of Ontario, nformation is power: BIST is spreading awareness to ensure that you and your loved ones are armed with the information you need to prevent financial abuse and fraud.
What Is the Difference between Financial Abuse & Fraud?
Occurs when someone you know and trust gains financially at your expense.
It can range from being quite obvious to very tricky to spot.
Often occurs repeatedly rather than in one isolated event.
Examples of Financial Abuse:
Someone stealing money from your wallet.
Feeling pressured to sign documents that you don’t understand.
Occurs when someone deceives you into giving up money, property, or personal information for their own gain.
The general goal is to get money. This is usually done through scams targeting you directly to pay up, or indirectly through using your personal information. Common scams include phone, door-to-door, and online.
Fraud is a crime.
Examples of Fraud:
Someone pressuring /threatening you to give them your money.
Someone coming to your door unexpectedly to sell you a service.
Someone stealing your personal information (identity theft).
Julia Renaud is a 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. She is an advocate within the health care community and has been featured in the coffee table book, A Caged Mind by May Mutter, which exposes the nature of concussions through body painting.