“Why Write a Book About TBI?”
By Jennifer Callaghan, TBI Survivor and author of MY BRAIN AND I
“Why I write a book about my Life!”
A TBI could happen to anyone. You’re getting on with your life, enjoying family and friends, out for a drive on a sunny day, thinking about what you’re going to do this afternoon, when suddenly, out of nowhere a speeding car hits yours and throws you into a five-car pile-up from which you are lucky to come out alive. Now, I’m a TBI survivor.
This is a book about my journey to recovery while dealing with my severe brain injury. My life changed forever. I went from being a competent, middle-aged professional and mum to a severely brain injured person who was totally dependent on others to do the most basic tasks. Suddenly, I couldn’t read or write or add up simple Math problems; I couldn’t go out alone: I couldn’t walk in a straight line, or talk without forgetting words, or exploding at people who were having difficulties understanding me. I would forget where I was or how I got there.
I learned how to write down my life story, from the moment of the crash that sunny day, through the tears, frustrations, and despair of losing my job, my life, and my sense of identity and meaning. Slowly over the years, I worked on regaining some of my former life abilities and the social skills to make friends while still learning how to deal with the world. It’s not the life from before, but it is now a new and satisfying one.
How Life Changes with a TBI
After I get out of the hospital, I find out I can’t hold down a job. I’m not able to stay awake past mid-day! I struggle to even find my way to any job I get!! My judgment can’t be trusted. I forget things, lose things, and can’t sort things out. I lose my temper suddenly or burst into tears for no apparent reason. I can’t do basic, everyday things: manage money, go shopping, or cook a meal. I have a severe brain injury.
So why would I try to write a book? Why would I even think that I could write a book? My life didn’t start as a book.
Coping with the TBI Reality and Getting the Right Kind of Help
A 5-car pile-up had left me like this, but I still thought I would wake up and be better “tomorrow.” When it dawned on me that this might be for a lifetime, I was appalled. “This is it? I’m going to have a brain injury forever?”
I was fortunate that my doctor saw how I was feeling. As far as I was concerned, I had no past (I couldn’t remember much), no present (other than figuring out whether I had eaten breakfast), and worst of all, no future. With empathy and sensitivity, she suggested (so I could see that I was making progress) that I keep a brief diary, scoring each good day – not very many of them – as a +1, +2 or +3; scoring the bad days – that was most of them – as -1, -2, or -3.
How Hard Can It Be To Write About My Life?
And so, my diary began. My daily entries recorded my life, or as I saw it, my much reduced life. I saw little bits of progress. I could see myself from both the inside and the outside and I began to feel sorry for this person who seemed to be me. I would laugh at her with her grandiose ideas (like driving!), and melodramatic tantrums (“I’m going to yell at the neighbor: he’s hammering!”).
I began by writing a few words, then a few sentences, and then, whole paragraphs. The more I wrote, the better I felt. I wanted, no — I needed to explain what it felt like inside the lonely head of a person with a brain injury and how the world looked. I thought a lot about other people who had brain injuries, and how impossible it was to explain to our families and friends why we behave the way we do; how every small step of life was a huge effort. It became more than a diary for me. The thoughts and experiences became a book for people with brain injuries and those around them; it became a book for all the many professionals, doctors, therapists and social workers caring and working to help, while struggling to understand who this “strange” person was.
How My Brain Interfered with Writing
The hardest part about writing the book wasn’t recounting my adventures — things like: crossing the road, letting unknown people into my house, or the 14 months it took to get my driver’s licence back. No, the hardest part of writing was that all my brain deficits were still there when I wrote. I found myself rambling off-topic. I repeated myself endlessly. I forgot the point of what I was saying. I forgot what I had already written. I resorted to printing drafts to better keep track of what I had written. But then, I forgot to number the pages I printed out and ended up getting them all mixed up. Is it any wonder that it took 15 years to write my book? Well, another 3 to edit it….
For me, what was important was that I let people know that I couldn’t always help (stop) what I did. If I blew up at someone, or rambled off-topic, or forgot what someone had said 5 minutes ago, no amount of trying would change that behavior.
Well, how else to handle it? I WROTE A BOOK!!!