Finding Support When Concussion Symptoms Persist: Concussion survivor and activist shares her story in free BIAA webinar
Concussions can have a wide range of symptoms, including headaches, nausea, sensitivity to light or noise, dizziness, exhaustion, difficulty concentrating, and more. For some, those symptoms can last weeks, months, or even years after the initial injury. In addition to the physical toll these symptoms can take on a person, they can often lead to feelings of isolation and despair, making it important for sufferers to get the support they need as they navigate their post-concussion lives.
Last month, Allison Moir-Smith, a therapist, artist, public speaker, and concussion survivor and activist, presented “Finding Support When Your Concussion Symptoms Persist,” a free webinar offered by the Brain Injury Association of America.
An Accident Leads to a Concussion
Allison shared that her concussion story starts like so many others – with an accident. “It was 2017, a Sunday afternoon. I was standing still on my home mountain’s ski slope. I was standing still, with my helmet on, and I slipped backwards. The back of my head hit something, I don’t know what, but it hit it hard.” Unaware that she had just gotten a concussion, she stood up and joined her family further down the slope. She continued to take another run, then took the two-and-a-half-hour drive to her home in Massachusetts.
Because she wasn’t exhibiting the most severe symptoms of a concussion (like being knocked unconscious or vomiting), she didn’t think she needed to be seen by a medical professional – a common mistake resulting from outdated information. If you fall, hit your head, or experience a sudden jolt, the best course of action is to get professional medical help. Visit our Take Action page to learn more about what to do if you suspect you have a concussion.
Just as so many other concussion survivors – especially busy working moms like herself – have done following their injury, Allison went on with her day-to-day life. But the following week, she started to feel unwell – something that is especially common in women, whose symptoms tend to bloom slowly. “I started to get light and noise sensitivity, headaches, nausea, balance problems. I couldn’t read or write. I felt like I had fire in my veins, and I didn’t understand what was happening to me,” she recalled.
Weeks went by, and Allison lived on in darkness – literally. “I was wearing a hat and sunglasses inside the house because of my light and noise sensitivity,” she said. Allison kept calling her doctor, who advised rest and assured her the concussion would heal on its own. “I trusted her because I had to. Because I had a brain injury and I didn’t know what was happening.”
What Happens When Concussion Symptoms Don’t Go Away?
Allison detailed the exhausting months that followed. “I lived my life for those six months. I was functioning, but I always longed to be on the couch, with my hat and sunglasses, under my son’s Star Wars blanket,” where it was dark, quiet, and safe, she said.
But that isolation took a huge toll. Under that blanket, she would ruminate, wondering why she wasn’t OK yet even though her doctor told her that she would be. She wondered if she had a tumor, or early onset Alzheimer’s. She was scared and depressed – and that depression grew into suicidal ideation.
Allison found herself withdrawing from her normal activities, including her exercise group and her church, where the singing and organ music were more than she could bear. She was even limited in how much she could support her children at their sporting and theater events. “I lost all of my normal supports. I lost joy, friendship, my identity of being a person out and about in the world,” she recalled. As she watched her friends carry on with their lives, she felt forgotten, hurt, angry, abandoned, and deeply lonely. Although being around other people was too stimulating and draining, the loneliness was overwhelming, creating an impossible situation. “Loneliness is serious stuff, with enormous physical and mental health consequences,” Allison acknowledged. “I lived this, and maybe you are, too.”
Finding Relief, Support, and Community
Over time, Allison began to experience what she called “small healings” – relying on her hat and sunglasses less, being able to sort her family’s laundry, getting through the holidays. The bitterness she had felt for months started to wane. She also found support in “unexpected angels,” the women who belonged to her church that sent cards, left cookies on her front porch, and checked in with her.
“Who is showing up in your life right now? Who checks in with you? Who helps you? Who takes the time, who remembers you, who reached out to you even when you can’t do your part in the relationship?” Allison asked attendees. “Those are your unexpected angels. I hope you can appreciate them, because they’re probably not who you expect. Start embracing the people who are actually showing up in your life.”
She also found relief and support in her speech language pathologist, who conducted tests that proved the symptoms Allison had experienced were not only real, but they were measurable and could be fixed. “I cried, and I cried, and I cried in this woman’s office,” she said. “She was confident she could get me to a different place.”
And she did. The speech language pathologist helped Allison develop strategies to help mitigate some of her symptoms, such as making daily lists of tasks that needed to be done and giving them to her family members to reference, which helped relieve her cognitive load. She also taught Allison how to calm her nervous system, which in Allison’s case included spending time using a coloring book. Those daily coloring sessions grew into a love for watercolors, and provided a tangible example of how far she had come in her recovery.
Allison’s daily art practice led her to Instagram, where she shared the progress she had made in her art in an effort to inspire hope in other concussion survivors who were struggling as she had. “Instagram has been a game changer in my concussion recovery,” Allison said, explaining that what she found there was “an amazing community of people who have knowledge and who will help.” She made friends, found work, sold art, and ultimately became a concussion activist thanks to the support she found within the Instagram concussion community. “There’s a wonderful world of concussion recovery just waiting for you to join us,” she said.
However, she acknowledged, connecting with strangers, even online, can be intimidating, Allison acknowledged. She shared tips for getting set up on Instagram, finding the concussion recovery community, and ultimately forging connections with survivors, activists, and others who can offer help and support during what is often a scary, painful, lonely experience. Allison offered suggestions for hash tags and concussion-related accounts to follow to get started, as well as tips for offering support to others who are struggling. “What you put out there will come back to you,” she added.
Tune into the entire free webinar here.