It started out like an ordinary September day for Sarah Lefferts in 2012. As she was walking, she suddenly slipped on wet tile flooring and fell backwards, hitting her head on the floor. When she got up she was upset that she had spilled coffee on her dress, but she had no idea how much her life had changed in that split second.
Over the next several days, her concussion symptoms would progress. At the time of her fall, she was working full-time, also attending graduate school, and as a twenty-something, she had an active social life. She was not okay with her new normal, and was frustrated that the healing wasn’t more immediate. She wanted to get back to work and school, and wanted to push her recovery as quickly as she could.
Sarah, like most of us, didn’t understand the recovery that was ahead of her, and neither did anyone around her. She said, “I learned a lot about how it was okay to be broken, and how I needed to communicate that to the people around me so they could understand enough to support me—even when I didn’t understand my injury.”
Her friends and family would go along to her doctor appointments and take notes so that she could look back later to remember what they had talked about. Early in her recovery, she used a small notebook so that she could keep her thoughts organized. She made to-do lists for everything, even basic stuff like showering and making food.
Sarah remembers going to the grocery store, and how she would freeze up as soon as she walked in. It was just too much for her. All of the options to choose from, and she couldn’t focus on what she was there to buy. She learned to make detailed lists and to save up her energy on days she had to go because she knew she would be completely exhausted afterward. So many take this simple task for granted, yet for someone dealing with a brain injury, it is an overwhelming chore to tackle.
Her job was based on an ability to communicate and work with others. After her injury, she wasn’t able to sustain conversations or be in groups. She didn’t even have the energy to engage with other people, and having one long conversation would wipe her out.
Sarah felt that her identity had been taken away from her—everything that someone would have described her as—was now gone. It took her a long time to show excitement again, and she now appreciates the ability to show joyful emotions so much more than she had before.
“One of the hardest parts of the recovery wasn’t the physical healing, but the social support. It’s a real challenge to figure out how to communicate to your network about what’s wrong and what you need from them. You look fine; you can walk and talk, so it’s harder for them to understand what you’re going through and what you need. Yet, it’s critical that you seek support from them,” commented Sarah.
Under her neurologist’s care, Sarah returned to work on a partial schedule after her injury, gradually working her way back to full time within the first year. In 2014 she went back to grad school, taking one class at a time, with some academic accommodations to accommodate her processing speed delay. She went on to complete a triathlon in 2015 and graduated with her MA in May 2016.
Sarah wants others with concussion to understand that they’re not alone and people do heal from this. There are resources and a community out there to help you through it. It’s challenging to advocate for yourself the way you need to when that part of your brain has been damaged, but you need to put your own physical and mental health first, which is not something society teaches us.
When asked how the BIAA has changed her life, Sarah said: “The group of people I have met through the BIAA is empowering and supportive. BIAA taught me that I am not alone in brain injury and that every injury is different. It blew me away when I realized how many people suffer from concussions and other brain injury. I feel like my responsibility on the other side of this injury is to help other people understand that this injury is often invisible, but you are not—and it’s ok to always keep striving to heal.”
This article originally appeared in Vol. 11., Issue 2 of THE Challenge!, the quarterly newsmagazine of the Brain Injury Association of America. Copies of the original issue can be downloaded at www.biausa.org/challenge
Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has created a privateFacebook group for survivors and also produces a podcast series. She sits on the Brain Injury Advisory Council (BIAC) through the Brain Injury Association of America’s and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.
In November, 2015 she released her first book, “Life With a Traumatic Brain Injury: Finding the Road Back to Normal” which received a silver award at the Midwest Book Awards in May, 2016. Her second book, “Surviving Brain Injury: Stories of Strength and Inspiration”is a collection of stories written by brain injury survivors and caregivers and was released November 2016. for more information: www.facesoftbi.com