In my mind’s eye I saw a feeble invalid reclining in her bed. Her gray hair wispy and her skin pasty. She was lethargic, listless, resigned to her fate, waiting for… what? For help? A savior? For life to happen around her. Or for the inevitable—death?
No— I refused to be that helpless hopeless woman. I would be proactive, working towards recovery. I could not, would not, accept my losses.
The daily struggle to regain my old life was draining. I had little left in my resources to focus on anything more than me, my difficulties. On the all too frequent bad brain days, I mourned the loss of the old me. Well-meaning friends tried to reassure me that I would eventually reach acceptance. “It’s like grief.”
The widely adopted Kubler-Ross model of the process of grieving follows five stages: denial and isolation, anger, bargaining, depression, and finally, acceptance.
Denial? Mainly during the first couple of months after the acute bleeds. Isolation? Yes—I did feel very much alone. Bargaining? Skeptical about the existence of a higher being, it didn’t occur to me to bargain. I had no one to bargain with. Depression? How could I not be depressed.
And acceptance? Absolutely not.
How could I possibly accept my difficulties? No one in their right mind would choose to be that ailing woman, that invalid. By accepting my situation, I’d be resigning myself to relinquishing control to the bloody brain, to a life without joy, devoid of hope. I could not live like this.
During my early days into recovery from the brain surgeries, the daily battle to survive was tangible, but I persevered. As I progressed, every struggle validated my aversion to the term acceptance. Every time the word came up, my hackles rose. I associated it with malingering and I was no malingerer.
I mentioned my attitude towards the term to my neuropsychologist. He leaned back in his chair. “I interpret the term acceptance the Buddhist way—learning to live with it.”
I could live with that interpretation. I could learn to live with the bloody brain.
He added, “It’s the feisty ones who do best.”
Yes, that would be my way. I was a fighter.
I was determined to heal, to regain the quality of life that was mine before the brain bleeds. I chose to live, despite the bloody brain.
Once I had room to breathe, the bloody brain lessened its hold on me and I was able to be more proactive. I spent several hours a day on rehabilitation, both physical and cognitive. I exercised daily, to increase stamina and strength. I played brain games on my Nintendo DS to improve my memory, ability to focus, and speed of thinking. I also attended to the emotional side of my recovery—I started seeing a psychotherapist and later, when it became clear that I was severely depressed, I added a psychiatrist and meds to the mix.
Writing about my journey also helped me in my psychological recovery.
I started writing about my recovery a few days after I returned from hospital, at first to understand the enormity of the ordeal and help other brain injury survivors realize they were not alone. As I wrote, my self-awareness grew—I learned about the impact of the bloody brain on my life and self. Along the way I made better connections and became more aware and open to input from the world around me.
The journey to rehabilitate was long and arduous. It became easier in time. But there is no full recovery from severe brain injury—it is ongoing, cognitively, physically, and psychologically.
I recently came across the serenity prayer. “Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.” I felt something within me click into place. I didn’t have control over everything in my life. In particular, I had no power over the formation of the cavernous angiomas in my brain, the brain bleeds, or the losses they incurred. But there were plenty of things I did have control over, things that would help me improve my quality of life, from relearning to read to becoming a writer and author, from leaving a stifling and stagnant lifestyle to growing into a new, fuller life.
But there was the awful word again, “accept.” I still couldn’t accept the fact that the bloody brain still had a hold on me. I still resented its demands, the way it lashed out at me whenever I overstepped the bounds it foisted on me.
Actually…was that still the case? Was I still frustrated and resentful? Certainly not as much as I was in the early days. As I advanced towards recovery, the good days increased in frequency and the particularly bad days were no longer the norm. Managing life as a brain injury survivor became easier.
I usually shrugged off my issues with short term memory—losing my train of thought, forgetting what I was about to do. There was no point in dwelling over them—they were beyond my control. I joked about my ADD-type problems—I was so easily distracted, frequently midsentence. I realized that for the most part I had come to take many of the mishaps caused by the bloody brain in stride. Was I in fact heading towards acceptances? But I had been so adamant about rejecting the notion. What had changed?
I continued to refer to the bloody brain in third person. Was that a sign that I didn’t accept it? But come to think of it, did I still think of it as a separate entity? Had referring to it as The Bloody Brain merely become a habit or an inside joke?
When my neuropsychlogist mentioned the Buddhist interpretation of acceptance, it didn’t occur to me that he was referring learning to live with it in only in the sense physical and cognitive recovery. Could he have meant more, that I’d eventually learn to live as a brain injury survivor in a deeper sense?
Perhaps I was on the road to owning the bloody brain, as an integral part of who I was. Perhaps I was learning to accept my life as it was now.