Life With an Invisible Injury: Lucy’s Story

Written by iScope’s very own Cassidy Richards & Heather Brown.

Brain injury is a silent epidemic.

Over 210,000 Canadians are diagnosed with a brain injury each year – a high number, given the low level of brain injury awareness in our communities.

In Canada, the month of June is dedicated to Brain Injury Awareness. Our mission nationwide is to advocate for those suffering in silence by joining the campaign #BrainInjuryAwarenessMonth. Our aim is to educate people about the symptoms associated with brain injuries, as well as about treatment options and how to prevent brain injuries altogether.

This blog post will not only introduce you to brain injury, but will also share with you the firsthand experiences of a person living with one.

How can I get involved?

You’ve already taken the first step! Reading articles about brain injuries is an excellent way to learn about them.

You can also share your knowledge with others to help reduce the stigma. A brain injury is considered an invisible disability, so the stigma is that they are not as painful or inhibitive as the individuals with them say they are.  In some cases, outsiders to the injuries have a hard time believing it is even there at all.

Symptoms from brain injury can last anywhere from a couple of days to well beyond a year – a long time to endure pain and discomfort without acknowledgement. Many sufferers of brain injuries experience a lack of compassion in familial, social, and occupational spaces.

This June, iScope encourages you to follow along on social media or share your own experience with hashtags: #BrainInjuryAwarenessMonth, #BrainInjuryAcrossCanada, and #SpotlightonBrainInjury.

Intro to brain injuries

No two brain injuries are the same: some people experience a singular symptom, while others experience a multitude of disabilities. The symptoms are also time-dependent: they tend to change throughout the recovery journey, and some have a higher likelihood of complete recovery the sooner they are treated.

Brain injuries involve cognitive, physical, emotional, sleep, and behavioural impairments.

Cognitive

A cognitive deficit will affect an individual’s processing and thinking. Cognitive effects of brain injury can cause issues with memory, judgement and planning skills, focus, and articulation, all of which may affect the individual’s ability to work. A person suffering from this may describe their mind as “foggy”.

Physical

Physical disabilities may include difficulty walking, difficulty completing daily tasks such as getting dressed or getting out of bed, coordination problems, poor balance, overall fatigue, and muscular weakness. Individuals suffering from physical ailments may also experience headaches, dizziness, nausea, vomiting, light or noise sensitivity, blurred or double vision, gait or balance instability, ringing in the ears, low energy, and neck pain.

Sleep

Brain injury can cause issues with falling asleep and staying asleep. Individuals with brain injuries may also experience nightmares associated with the accident or incident in which their injury occurred. These sleep disturbances usually cause daytime drowsiness, which makes it difficult for the individual with the brain injury to perform physical or cognitive tasks at work or home.

Behavioral

Behavioral effects are multifactorial, as they are both mental and emotional. Behavioral changes not only affect the individual with the brain injury, but they are also likely to impact the individual’s caregiver, family, and friends. Common behavioural effects include anxiety, irritability, depression, social dysfunction, impulsivity, and anger.

Another aspect of behavioural changes is emotional: after a brain injury, the threshold for regulating emotions declines. Emotional issues are prone to interfere with activities of daily living. The emotional inability to cope with the effects of a brain injury will surface as grief, mood swings, or depression.

Living With an Invisible Scar

For Brain Injury Awareness Month, we interviewed a patient for personal insight. For privacy’s sake, the  patient’s name has been changed to Lucy.

2 years ago, Lucy was in a motor vehicle accident. She was riding as a passenger when she and her partner were suddenly rear-ended.

The driver of the other vehicle fled the scene.

Lucy had sustained injuries to her head, neck, and back. Her physician recognized that she had a concussion, also known as a mild traumatic brain injury (mTBI). They referred her to iScope for further evaluation.

The neurosurgeon diagnosed Lucy with multiple neurological conditions. Among these was Post-Concussion Syndrome, a long-term condition following the initial injury to the brain. Today, Lucy continues to endure difficulties with hearing, vision, and range of motion.

Interview

iScope: What is the greatest difficulty associated with your brain injury?

Lucy: My double vision. I walk into things all the time. I’ve lived in my home for many years, and I know where the closet door should be, but I still end up walking into it. I’ve also placed a pot on the edge of the stove and spilled the whole thing. One time, I sat too close to the edge of a chair. I actually ended up falling off of it!

iScope: Other than physical difficulties, how has your double vision been challenging?

Lucy: Oh, I get embarrassed all the time. And scared. I don’t have peripheral vision anymore, so things seem to appear very close to me, very suddenly. My partner and I were in the car the other day, and this semi truck beside us seemed like it was going to hit me. I screamed, and that scared my partner, too.

iScope: What has been the most helpful treatment for you?

Lucy: Occupational Therapy, hands down. My Occupational Therapist has helped with so many different parts of my day-to-day life. Together we observe what I’m doing, and then come up with strategies for adapting to my injuries. One of the ways I’ve adapted is with reading; I love reading, and it seemed impossible with double vision – these days I cover the page with a piece of paper to isolate the words.

It helps to have my Occupational Therapist’s constant encouragement. She also teaches me about my condition and lets me know that others have experienced the same issues. The more I understand, the less scared I feel.

I always say that iScope is the best gift my doctor gave me, and I don’t know where I’d be without you guys.

iScope: What is your most important goal when you think about your recovery journey?

Lucy: Well, being able to socialize. I lost so much, socially: my church activities, my work at the legal office, my ability to host my family. I used to be able to cook meals for gatherings with 18 people. I miss doing that.

Come to think of it, Botox has actually helped tremendously, for my migraines. Before I had Botox, I felt like everything had been taken away. After I had the injections, it was such an unusual feeling to wake up without pain. I was so used to having chronic migraines that they had become a normal part of my life. Now I can actually spend time with my grandkids without being too sensitive to noise and light.

iScope: What would you like people to know about those suffering from brain injuries?

Lucy: If you were injured in a collision, whether you were at fault or involved in a hit-and-run like I was, at some point you have to just let it go. Acceptance is part of the grief process. Oh! And if you start having negative self-talk, ask yourself, “Would I say this to a friend if they were suffering?” You absolutely would not.

My message for people who don’t have brain injuries is: if you see someone trip, or hear them stutter, or if they’re not able to accomplish tasks you consider to be easy, have compassion. Give others around you much kindness and grace. I struggle to give that to myself sometimes.

I remember falling asleep after a massage once, and I was so embarrassed when I woke up – my massage therapist had been waiting for me to change and come out of the room. But you know what she said to me? She told me that falling asleep was the best compliment I could give her. Her attitude was so free of judgment, and so full of grace, that I was able let go of my embarrassment.

Conclusion

If we expect to reduce stigma, it’s crucial to advocate for those who are suffering.

The need for advocacy certainly applies to those with brain injuries. Currently, dismissive attitudes contribute to the provincial and federal policies surrounding the treatment of brain injuries. The policies prohibit Canadians from accessing the treatments crucial to their successful recovery.

The most significant obstacles when dealing with a brain injury are: a low socioeconomic status, systemic racism, job loss, inaccessible location of services, a lack of funding, and a lack of physical or emotional support.

These disadvantages have devastating consequences. Without proper treatment, individuals suffering from brain injuries are at a higher risk of substance abuse, homelessness, and suicide.

At iScope Concussion & Pain Clinics, we will stand in the gap for those suffering. As Canada’s only national rehabilitation clinic with a specialist-led multidisciplinary team, we are ready to address all aspects of the recovery journey.

Our team includes sub-specialized physicians, nurse practitioners, rehabilitation professionals, and technologists trained to manage concussion, chronic pain, and neurological disorders. We treat all physical, cognitive, emotional, and sleep-related symptoms under one roof, from testing to diagnosing to conducting treatment.

This June, let us stand together for Brain Injury Awareness Month. Please join us alongside thousands of other Canadians in raising awareness and advocating for those with brain injuries.

Links:

https://content.iospress.com/articles/neurorehabilitation/nre00162

https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/severe-traumatic-brain-injury-in-a-large-canadian-health-region/C2D50F380D03C5264D0A251953CA918F

https://journals.lww.com/jtrauma/Fulltext/2002/05000/Isolated_Traumatic_Brain_Injury__Age_Is_an.00015.aspx?casa_token=42BBkSXvx28AAAAA:ZC308ESMs9o5jdmtGPh0hu_05KzTLLgwmnWwFPv0M434BS1d3D69eUua8XJhGayTeuHem-5ybv1t-4mqKX0DAMEaWgZL_4g

https://journals.lww.com/jtrauma/Fulltext/2002/12000/Epidemiology_of_Severe_Brain_Injuries__A.20.aspx?casa_token=hRVQnHkRIP0AAAAA:8CJXzEPY7LpOvDml57Wp6mtbxjetPEAIz5Ehck53hE8mQL_O6ksT_J_FKogP7rCMZtjYmtdRcAcHAtoFR7GS95rC9tbyoaM

https://www.tandfonline.com/doi/abs/10.1080/02699050110119862?casa_token=G24f18Vcij4AAAAA:erYqeHCpOF3nZpdA3YJx7ivBBR5e_TtM1Y2kBkld19q0e7nUGY4k4bVmLUjGiraPLXmtXSa42RRb

https://braininjurycanada.ca/en/brain-injury-awareness-month#:~:text=In%20Canada%2C%20June%20is%20Brain,at%20all%20stages%20of%20recovery.

https://www.uptodate.com/contents/sleep-wake-disorders-in-patients-with-traumatic-brain-injury#:~:text=INTRODUCTION%20Sleep%2Dwake%20disturbances%20are,fragmentation%20%5B4%2D6%5D.

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