Kiss Your Brain

My daughter was 3 years old when I had my first concussion and she lovingly invented the “brain kiss.” I was completely intolerant of motion near my face, so leaning in for a kiss or hug was intensely painful. She gave her palms a nice long smooch, and gently placed her hands over my forehead and eyelids. In that moment my pain melted away, and her love made me feel whole, if only for an instant. 

My first visit to the hospital felt purely precautionary and the E.R. doctor seemed to agree. “You’ve had a mild concussion. You should be back to normal in 7-10 days, but take a week off just to be safe.” I followed doctor’s orders: stayed off screens, ate well, drank plenty of water and went for short walks. It wasn’t until I returned to my regular routine that I started to notice symptoms – dizzy spells, difficulty concentrating, light and sound sensitivity, jumbled memory and punishing headaches. My brain felt like a snow globe that wouldn’t settle and any time the cognitive input in my world – a screen, an electric bill, a fluorescent light or a screaming child – became too overwhelming, my brain felt like it was slowly shutting down. 

“For some people it takes a little longer,” the doctor explained. The months following my injury felt like a frustrating game of trial and error. Treatments. Therapies. Constantly shifting protocol. A week turned into a month, which turned into three months, then six. I finally found myself sitting at my one year appointment being told that this “may be my new normal,” – that my prolonged condition unfortunately couldn’t be explained. 

To make matters worse, another fluke accident resulted in a second concussion with debilitating setbacks. I felt defeated, but was determined to find a path forward. A desperate Google search, “yoga for brain injury” led me to the Love Your Brain Foundation, an incredible organization providing free and research-backed programs for the brain injury community and their caretakers. 

There is nothing more valuable than meeting a group of individuals who instantly understand your experience. They nod vigorously as soon as you begin to tell your story, and it’s as if you’ve known each other for years rather than just a few minutes. Their stories ranged from car accident to stroke to gymnastic dismount gone wrong. One woman had hit an overhead cabinet just like me. Every brain is unique and every brain injury is equally unique. There is a great deal that can be learned from sharing stories of recovery and resilience, whether they are stories of progress or of disappointment. 

As I have grown my personal brain injury community, one common theme I’ve heard is the simultaneously invisible and transformative nature of this disability. Following a broken arm, there is a visible cast, and it is very clear to the observer what the temporary impairment might entail. A brain injury impacts every part of your being, and the impacts are often not seen or well-understood. On the outside, I looked like the same Alli, with the exception of my new secret agent sunglasses and ball cap sensory blocking uniform, but inside my identity was stripped of all function that gave my life meaning and purpose. While I looked the same, I had lost myself. 

It was in hearing and sharing these stories that I was motivated to seek another medical opinion at the Sinai Brain and Spine Institute in Baltimore. The brain is an incredibly complex organ and there is still much the medical community is learning about the impacts of TBI. After a year and a half, the specific root of my symptoms was uncovered and I made miraculous progress. Two and a half years since my first injury, I still experience cognitive and physical limitations, but can now function in a way I thought might never be possible again.

People often ask me, “So where are you in your recovery?” I have now shifted my mindset about what it means to live inside my post-injury body. If I count the things I am able to do without modification or assistance, then my response to this question is 40-50%. Alternatively if I consider how well I feel when I consistently do all the things I know my mind and body need and honor my limitations, then I can say 80-90%. On my best days maybe even close to 100%. 

This change of perspective, thinking about my resilience and self-awareness within this new reality, rather than the goal of getting back to who I was before, has been incredibly powerful. I may not be able to jog yet, but I can go on a long hike through the woods. I may not be able to do a downward dog yet, but that doesn’t mean I can’t practice yoga. I can’t sit and read for hours on end, but I can read a little every day if I stick to the large print section of the library. I have had to rethink my career aspirations, but I can still find a sense of purpose and fulfillment in the few hours of work I dedicate myself to each week. 

My daughter came home from kindergarten the other day and shared with me that when she does something particularly clever her teacher tells her to “kiss her brain.” I love this. Our brain is interconnected with every physical, mental, social and emotional side of our self and shapes how we experience and live in this world. 

So give your brain some love. Always wear a helmet and seatbelt. Make space for mindfulness and time to be still. Get outside and take a full breath of fresh air. Notice opportunities for connection with those around you and choose the person in front of you over your screen. Kiss your brain! And if you or someone you love has suffered a mild, severe or acquired TBI, know that you are not alone. Find your community. Share your story. #MoreThanMyBrainInjury