Brain Injury – A Family Affair

My mom recently died. At the time of this writing, we are planning her graveside service for this upcoming weekend. Two short weeks ago, the small church in her quiet New Hampshire town was filled to overflow capacity by those who knew and loved my mom. It was a touching tribute to a woman who touched the lives of so many.

In the early years after my own brain injury, in my innocent naivete, I thought that all brain injuries were traumatic brain injuries. It was only after several years of being part of the brain injury community that I learned otherwise. Acquired brain injuries are more commonplace than I ever knew. My Mom’s final chapter started with an acquired brain injury.

Her stroke was a year ago, and thus began a year of institutionalization at a local rehab.

The last year has been one of the most bittersweet of my life. My wife Sarah and I were perhaps the most predominant caregivers for Mom. As a trip to her rehab was close to a 200-mile round trip, we secured a small lakeside rental for most of her last year. We were ever-present fixtures by her side. For the first time ever, I was able to see brain injury through a caregiver’s perspective, offering me more insight as to what Sarah experienced after my injury.

“Thank goodness this was not five years ago,” I said to Sarah countless times. Five years ago, I was not the person that I am today, as I wandered through my day-to-day life under the heavy cloak of brain fog. Mom’s stroke and subsequent time at the rehab came at a time that I was able to actually be present, to be useful, and to help make critical decisions about her healthcare.

My own experience as a brain injury survivor gave me stunning insight into the challenges Mom faced. I was able to recognize slow processing and word-finding challenges for what they were – not because I was told by a healthcare provider, but because they were part of the very fabric of my own life.

I find myself reflecting over a lifetime of memories.

When my first book, Metamorphosis, Surviving Brain Injury, was published, I was reluctant to let Mom read it. In an effort to spare my parents worry, I lied quite often during my first post-injury year. I did this to protect them. In my book, I was painfully candid about my struggles. My dad later told me that Mom spent several days crying after she completed reading my book. I was both devasted and relieved at the same time. Devasted in knowing that Mom anguished over my suffering, yet relieved that I no longer had to candy-coat how tough it really was.

Back in 2013, I presented in a keynote capacity at a Brain Injury Association of America annual conference in Maine. My mom and dad were in the front row. “David, we are so proud of you.” I can still hear her voice.

Mom was one of my biggest supporters. In the years that followed my injury, I would call home to tell her about my life as a brain injury advocate on the road. “Mom, we’re in Seattle,” I’d share, my excitement palpable. She loved hearing about our many adventures. There is no better feeling than knowing that you’ve made your mom proud!

In the weeks between her funeral and upcoming burial, my PTSD has come back with a vengeance. It did the same thing after Mom’s stroke last year. As my trauma doctor told me, “New trauma exacerbates old trauma.” I fully expect this latest resurgence to pass as the weeks pass. I’m holding onto my seat on this roller coaster ride that so often accompanies life with both a TBI and PTSD.

There is still that utter disbelief that she’s gone, a level of almost undefinable surrealism. I have a mom-shaped hole in my heart. My mom was 83 when she passed away as a direct result of a neurological condition. Not a day goes by that my eyes don’t fill with tears.

We were at the rehab just a couple of short days before she died. Fate saw fit that we stayed for hours that day, much longer than our typical visits. Thank goodness for small miracles. We talked quietly in the common room and enjoyed the extra time just “being” in her company. I gave her an extra-long hug as we prepared to leave.

My last words to Mom, like they always were … “I love you, Mom.”