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Losing Oneself in Brain Injury and a Life beyond Depression
Rolf B. Gainer, PhD
Over the last few years, I have been writing and presenting on the topic of Loss of Self. My awareness of the role of loss has grown from my work with people living with brain injury and the depression which many of them experience and the long term outcome studies we are operating where loss of self could be observed at many levels in the years post-injury. In 2011, I wrote a blog for NeuroNotes, “Depression, Brain Injury and Suicide”, which continues to attract responses from the readers of our blog. What is central to so many of the responses is the degree to which the person’s view of loss and the struggle to recreate themselves in the years following their injury can be an overwhelming experience.
Today, I found a blog written by Laurie Rippon, “In the Presence of Catastrophe-TBI to Life”. Ms. Rippon has had a brain injury and has transitioned to the roles of mentor, advocate, peer counselor and BIA-NY Board member. Ms. Rippon revisits Kurt Goldstein’s definition of “catastrophic reaction” and that expressed by Yehuda Ben-Yishay: “It is not a conscious phenomenon. Rather, it is the expression of the protective mechanisms of the organism…the behavioral manifestation of a threat to the person’s very existence, due to the failure to cope…By avoiding…new experiences and sticking to the familiar or the routine (individuals with brain injury) minimize the chance for experiencing catastrophic responses”.
Ms. Rippon talks about feeling vulnerable and easily overwhelmed and experiencing the desertion of friends. She addresses that “preferring isolation to catastrophe, they both leave you so, so lonely.” In her blog, Ms. Rippon talks further about the gradual shifting from looking inward to reaching outward. She also wonderfully addresses the nurturing of an empathetic self: “I must remember, in the moment, that every time I interject me into a conversation, I risk losing you. Empathy is a powerful and empowering force”. Ms. Rippon’s mindfulness of the world of “you” and “me” is profound and a positive life lesson which I suspect has been a motivating force in her life. Ms. Rippon closes her blog with great eloquence: “When we care enough to see someone else’s pain, or hear their need for silent compassion, we step out of our cocoon. When we listen, quietly, we can help them, and ourselves, heal.”
The process which Rippon describes is shared by other people living with a brain injury disability. Ray Ciancaglini, a retired boxer and founder of “The Second Impact” spoke about his growing awareness of his new role. A tireless advocate for prevention and treatment Ray Ciancaglini said: “…the only thing I could do is prevent another athlete from going down my path…” Craig Phillips, the author of many self-help articles and books and the founder of “A Second Chance to Live”, referenced his own self-awareness: “…I could replace perfectionism with the pursuit of excellence. I had to get to a place where I could move beyond the pain of denial and not accepting my reality, before I could grieve my reality…” Another person living with brain injury, Melissa Felteau, is a noted researcher and author in the application of Mindfulness Based Cognitive Therapy who addressed the “you” and “me” issue: “”I started to feel OK about myself when I started volunteering and getting involved in peer counseling… I started to develop self-compassion… the third hurdle was getting my Master’s degree…”
Each of these individuals faced the task of re-establishing self-value and learning to like who they are now following a period of grieving. The pathway created by each person, while unique to each of their lives, shared many common experiences. There was a moving beyond where they were stuck following their injury which was fueled by an increasing awareness of themselves and a re-positioning of their social roles and, to a greater extent, purpose in living.
My thanks to Ms. Rippon for her eloquent essay and sharing of her personal journey.
References:
Rippon, Laurie. In the Presence of Catastrophe-TBI-to Life.
Ben-Yishay, Y. (2000) Postacute neuropsychological rehabilitation. Christensen and Uzzell (Eds.) The International Handbook of Neuropsychological Rehabilitation (pp.127-135) New York: Kluwer Academic/Plenum Publishers
I only just found your piece. Thank you for writing about TBI to LIFE. with insight and empathy. Articles like your help make outreach possible, to give a glimpse into potential – as a community and coming to grips with ourselves – who we were, who we want to be, what we could do, and what we are sure we cannot.
What amazed me most starting TBI to LIFE, was discovering I can write. I never did before, never tried, or put words said onto the page. It took me 10 years, but now I can and do write – and in my own voice. It is thrilling – no matter how hard it is or how long it takes. This life is completely different from the one I used to live, but equally satisfying – if not more so. So much to learn and do.
Thank you for your vote of confidence, and sharing my work with your readers.
All the best,
Laurie