The Rev. Shelley Pick is a volunteer chaplain and community educator with Brain Injury Association of Nova Scotia. She has lived with the long-term effects of brain injury since 2007, when she suffered a Traumatic Brain Injury (Diffuse Axonal Injury) as a result of a motor vehicle accident. Ever since her injury, Shelley has felt passionately about helping brain injury survivors understand and navigate their lives post-injury.

“I hit a patch of black ice driving to work. I sustained a significant brain injury at that time, which was undiagnosed for three years. This was a time of confusion. I healed from the physical injuries but was hypervigilant and unable to rest or sleep. The myriad of strange symptoms included a lack of physical triggers – I lost my ability to feel hungry or thirsty and the ability to feel time passing – sitting in silence for hours, unaware. My capacity to sustain thinking and physical activity and 40 years of honing my self-awareness were taken in the blink of an eye.”

Following her injury, as many survivors do, Shelley initially struggled with the invisible changes and ambiguous losses suffered because of her TBI. “There is my life before the accident and my life after. The accident changed who I was. I looked the same, but I was completely different. It was a huge challenge to figure out the way forward. It was much easier to succumb to the negativity and hopelessness. How could I fulfil my call to ministry when I couldn’t complete the most basic living activities like sleeping, being around other people, or any routine?”  

Despite these struggles, Shelley showed strong resiliency and, through her own research and connections, discovered Brain Injury NS. “When I finally met other survivors through the Brain Injury Association of Nova Scotia, I started to realize the huge group of individuals largely suffering in silence and feeling completely misunderstood. Every brain is unique; therefore, every brain injury is completely different, complicating everything. There were very few supports for living with a brain injury or resources at that time. When I had any extra energy or capacity, I fulfilled my call to ministry through volunteering with the Brain Injury Association of Nova Scotia.”

As part of her extensive volunteering with Brain Injury NS, Shelley developed and delivers what has now become the most popular workshop Brain Injury NS offers: Coping with Ambiguous Loss After a Brain Injury. “Ambiguous loss can be one of the most difficult challenges many survivors and families face after a brain injury. It is a loss that defies closure or experience and leaves us searching for answers. This complicates and delays the process of grieving and prevents us from finding the resolution that we need to move forward with our lives in a meaningful way.”

While the path to Shelley’s recovery was not always clear, she always remained positive and held a genuine passion for helping others struggling with the same thing. When asked how others can support survivors in their lives, Shelley shared her words of wisdom: “In my opinion, many brain injury survivors are suffering silently. Their issues are not understood or even talked about in our society. We brain injury survivors are neurodiverse, and therefore, working with us can not be a ‘one size fits all’ approach. We are not always easy to deal with, as our symptoms are extremely diverse. Some things you could do for those around you include educating yourself on the invisible symptoms of brain injury, ensuring to ask what might work for them instead of assuming their needs, and, while it may sound too simple- believing them; don’t dismiss or trivialize their struggles with responses such as: ‘Oh, I get confused too, I just use my calendar now,’ or ‘Yes, I have a hard time finding the right words,’ what would be more helpful is deep listening, and perhaps, ‘Tell me more about that.’ For many survivors, comparing the struggles of a non-survivor to a survivor can be like comparing intramural sports to the NFL. Survivors of brain injury are not simply inconvenienced but live 24/7 with their issues for the rest of their lives. In his famous book The 7 Habits of Highly Effective People, Stephen Covey says in Habit 5: ‘Seek first to understand, then to be understood.’ This habit would help in many areas of our communities and our societies but is particularly needed with brain injury survivors.”

When he was 17, Shaun had a brain tumour burst and following surgery to repair the hemorrhage, he was told he would never walk again, could not have children, and would not live past 21 years old.

“I have a lovely story about how a bear attacked me, but the truth is cancer,” Shaun said when asked how he describes his brain injury to others. The reality of the situation was, of course, no joking matter at the time. “After they did the biopsy, I was given less than a year to live, and they sent me home because they said there was no point doing radiation or chemotherapy.” Later that year, Shaun was rushed to the hospital after suffering a gentle bump on the head. “I remember telling the Neurosurgeon that he smoked too much, and the next thing I remember was waking up in the ICU.” Despite his initial assessments and seizures, Shaun continued working hard with the QEII rehab team. “By the time I was done rehab, I was walking again and even playing basketball. Shout out to the rehab and stroke ward people who helped me and kept me moving. I am now well past 21 years old, double that. I can walk and have two children.”

Despite his remarkable recovery, like many survivors, Shaun’s life is not free from the impacts of his injury. “I have chronic pain, and I’ve since developed a visual impairment called reading/reactive seizures, so I am learning to do everything with a voice reader now. I have many physical impairments, including a limp, and my left arm is paralyzed. I actually begged doctors to amputate as I would rather have a stump than the weight on my side as a constant reminder of my disabilities. Still, I have since learned to live with it and even use it to some extent to rest things on and carry some objects or my youngest child. My energy was a lot better before. My memory is not as good anymore. I used to be able to practically memorize an entire textbook for a school exam, but I can’t do that anymore, but I luckily still have some memories from when I was a little kid.”

After his injury, Shaun was unable to complete high school due to the impact of his injury but has since gone on to graduate from the Adult Learning Program at NSCC. After returning to school in 2012, Shaun worked within the government and volunteered with multiple organizations. Shaun is currently the primary caregiver for two children, which does not come without complications and worries post-brain injury. “They are not gentle with my head, yesterday, my youngest accidentally punched me in the nose, and while cuddling in bed at night, my wife accidentally head-butted me. This still causes anxiety attacks for me, even after all these years, and it’s something I have to deal with. something many of us have to deal with.”

While Shaun’s road to recovery, like many others, wasn’t always clear, Shaun and his family continue to remain positive. He shares his coping mechanisms and recommendations for other survivors: “Exercise was always the best thing for me whether I’m in a wheelchair and just pushing myself along, or being able to walk. Being in the water helps me a lot, whether it’s a lake, a shower, or a pool. Meditation is also beneficial. It doesn’t have to mean sitting still and humming all the time. It can also mean movement and walking and so many other different things. It can help settle the brain.”

“Don’t be afraid to think things through. It can be scary, and it’s okay to be scared. Don’t be scared alone, and don’t push the people you love away. Reach out for help, and people will help you. You’re not alone. We are there for you.”

A mother of a brain injury survivor, Colleen has a daughter whose brain injury occurred after being hit by a reckless driver while crossing the street.  

“Living away from home, she previously would still lean on us for general support and affection in her life. She’d hang out with us, call us frequently, tell us she loved us,” Colleen said of her daughter’s life before suffering a brain injury. However, much about life changed following the injury. “It negatively affected her emotions and mental health; she spent a few months being tremendously angry with us due to confabulations and fixations that arose in her mind. She won’t tell us she loves us. The brain injuries also affected her short-term memory. She says that unless someone reminds her in great detail, she can’t remember events since her accident. She also cannot easily recall words. She suffers migraine headaches, and she doesn’t have a sense of time passing.”

While recovery is progressing for Colleen’s daughter eight months following the injury, no brain injury comes without overcoming struggles. 

“We’re only eight months in and currently in a downward spiral part of what seems to be a recurring loop of contact versus no contact. But we remain grateful that she lived through her horrific hit and that she was able to get top-notch trauma care right away – it saved her life. Due to the confabulations, she has acted pretty cruelly at times. She doesn’t seem to be bothered by the memory loss. In fact, she seems to be detached in relationships in a way she never was before. She did start working again a few months after the accident, which seems to have brought her purpose. She tells us she loves her new job and her co-workers, but she has to sleep twelve hours a night to function,” said Colleen. 

As Colleen and her family know, brain injury can impact everyone around a survivor, and coping mechanisms are essential not only for survivors but also for family/supporters.  

“Eat well and regularly, let people feed you, get enough sleep (with medical help if necessary for the initial shock period), get fresh air, talk to friends, do some handwork or physical activity,” Colleen said of her coping methods and recommendations to other families. “Document all that is going on with the person’s care and recovery. In the beginning, stages, tell yourself that ‘this is the brain injury’ when unusual behaviour occurs, don’t take it personally. Persist with medical personnel when you don’t understand something or are seeing something they aren’t seeing. Keep them informed about your loved one’s normal behaviour versus what the brain injury is causing them to do. Ask to speak to the neurologist. Ask hospital social workers to find brain injury information for you – they should know how to find support for families; it’s their job. Insist they look for information if they say they don’t know (ours didn’t have a clue, but we were too shocked to insist on anything). Find other people who understand what you are coping with and cry/rant with them. Please don’t be shy to ask for help when you need it, for anything. Say ‘yes’ and give specific tasks when people offer help. You won’t believe which random people come out of the woodwork to step in.”

While the recovery of a brain injury can be a long and tumultuous road, Colleen and her family remain hopeful. She offers one final piece of advice for families and supporters:

“Get therapy for yourself as a family member/caregiver if you are having difficulty. If you have to wait for the public system for too long and you don’t have insurance, look into finding a therapist who can give you a sliding scale fee- they are out there. Learn to breathe deeply and slowly- you’re going to use this technique a lot.”