The Cycles of Joy, Despair, Acceptance, and Healing

It has been eleven years, eight months, three weeks and six days since my brother Matt’s automobile accident in Louisville KY that changed his life, my life, and many lives, forever.

I don’t count the days, hours, or minutes anymore except for articles like this. I used to count every hour because time was altered and distorted from the life I had been living only days before. This year, the day of the accident passed without my even remembering the anniversary.

That was a miracle. I couldn’t imagine that day would come.

The word miracle is defined as “an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to the supernatural cause.”

Yes, it is a miracle that I am less consumed with Matt and his residual life as a traumatic brain injury survivor.

Yes, it was a miracle that Matt survived, and yes, the level of his trauma, the day of his accident, did surpass all known human and natural powers. And yes, there are days I wish he had not survived. That is the dark side for families living with brain injury. It is a thought and a conversation saved for only those who live and witness the exhaustion of living with, caring for or loving someone with brain injury.

Matt does not live with me, and I do not care for him day to day. He lives in a beautiful facility here in Delaware where we live. I lived here before his accident, and I moved him when his marriage ended, and I became his guardian for life.

This brings me to all of us who love a person with a brain injury. To all the moments early on when glimpses of them began to emerge. To the joy of hearing them speak for the first time—the relief of watching them breathe without a ventilator—the thrill of seeing them sit up, hold a cup and swallow. Loving them through the despair that sets in over time when you realize that life will never be the same for anyone. The exhaustion of having the same conversation over and over. The frustration and anguish of losing your patience with them when they need it most. The depth of sadness that crashes over you remembering who they were and how life was. The persistent grief of losing your loved one over and over as you recognize “they” are never coming back. I have finally arrived at acceptance…sort of. The cycles of joy, despair, acceptance, and healing go round and round.

Time blurred as I floated through the early years of adjusting to Matt’s new way of being and my new way of being with Matt. It did not / has not come easy, but life has calmed down and resumed a rhythm of its own. On an ongoing basis, I meet people who have “brain injury” in their family. Those of us who love someone with TBI are always relieved to find someone who “understands” the toll it takes. The unexplainable nuances of moment to moment worry, keeping at bay the emotions that tumble, and navigating all the lives newly constructed in relation to the “injured.”

I have learned many things over the time since Matt’s accident. With hope, I learned, and offer to you, that the most change doesn’t only happen in the first year. Matt has incrementally improved every day and every year since.

I have learned that brain injury is a family injury. All of life is different from that day forward. Our parents have passed away. Matt’s children are now grown. My two sisters and I are older and worry about the ongoing care of Matt and what will happen should something happen to us. As for Matt and many TBI survivors, he is stuck in time. He perseverates of moving back to Columbus, Ohio with his friends and returning to work. He can tell you years have passed, but in his mind, the concept of time doesn’t translate. Another loss settles in over-time as friends fall off and isolation set in.

Today, all these years later, I feel lucky, inspired, and blessed. My family stayed strong and united in aiding Matt. Many families don’t “survive” the accident. I have become inspired to better myself since coming to understand deeply how quickly life can change. I am blessed to have people in my life who understand the crazy up and downs of loving someone with a brain injury. I wish for you all the same as you calculate moving forward in your life. All the best.

Live with courage,

Sally