Earlier this week, I agreed to do an interview with a Journalism student named Eli Hillen. He’s doing a photo journalism project on the topic of loss.
He reached out to the Brain Injury Association of America looking for someone to talk about memory loss after brain injury. They reached out to me.
I am not exactly sure what motivated me to make some suggestions to him about resources and people who could talk with him about loss after brain injury.
I did want to make some suggestions to him to guide his search. I have seen some articles on the topic of loss after brain injury and I think there is so much more that needs to be written about it and done well.
I must say, though, that I have never felt the urge to contribute about the issue of loss after brain injury before.
I had a packed week, so it wasn’t as if I really had any extra time to talk. But I responded with some suggested resources that Eli should read. And then Eli said he’d like to talk with me by phone. And then someone cancelled an appointment, so there I found myself talking with Eli and answering questions about the topic of loss for Eli’s project. What I thought would be a fifteen minute call was so engaging that it lasted over an hour.
And, as is true anytime I answer questions from a journalist or student, I find myself thinking about my injury and recovery in a way that I wouldn’t have done had I not spent the time and energy to do the interview.
To go a little deeper, I had to write and tell my story quite a bit to get to the point where I could process and remember and understand my story for myself.
I had to do a lot of work writing my story for myself before I could tell my story and before I could give interviews.
Writing and telling my story over and over has helped me to process many difficult emotions–like anger and grief and frustration–to name a few.
It’s also helped me come to terms with the reality of my injury and the difficulty of finding appropriate resources to recover.
Often I have written my heart out about whatever is in my head.
Then, when I have read what I have written, I have cried and cried. There is something about seeing one’s words in black and white.
Writing has helped me see concretely the difficulties that I have had with just writing my thoughts and how my verbal expression has changed after my injury.
The starkness of my words on paper has helped me understand my deficits better and feel my feelings about the change in my abilities and my functioning after my accident.
And answering the questions of journalists and students has also helped me get to questions that I would never have thought to think about for myself. Hence answering questions from others has allowed me to examine topics that my brain would not have gotten to on its own after my injury.
In examining the questions when asked by others, I have had to reach for considered answers. Its almost like I can feel my neurons try to reach out to parts of my brain that aren’t yet so accessible to me because I haven’t gone there in my brain yet.
So I answer what is top of my mind, and then sometimes, I will find myself thinking about the question and a larger, fuller answer later.
When I first started talking to journalists and students, sometimes I wouldn’t be able to sleep that night, because my brain would still be working on an answer. I learned how to get up at night and write things down so that I could get the thoughts out of me. After I had done that, I could sleep.
The next morning I would send off my written thoughts or corrections to the journalist or student (if they were interested in this information that my brain eventually wanted to express but couldn’t express on demand at the interview).
Over the years, I have been able to express more during the interview. Thus, there was less information needing to come up out of my brain later to keep me up at night.
So the process of telling my story to others has improved and its much easier for me to answer questions in an interview than it used to be.
But, I am getting sidetracked.
Back to my interview with Eli.
There are two big gifts that Eli gave me with his two questions during the interview.
1) While I did not see it coming before the interview, I was surprised and pleased that Eli asked me gently to talk about the flip side of loss… which is gain in the long term after the loss.
2) And, the question that he asked that I found so interesting and hard to answer was: “What motivated me to try to get back the things about my brain that I lost?” I keep coming back to think about that.
So here is my more considered response to these questions:
I lost so many things with my injury… But over time, I have had had many gains also:
I lost my sense of self so I had to find myself again and I am a bigger person for doing that work,
I lost my ability to function independently so I had to learn to function dependently and independently when I could,
I lost my brain as I knew it (which means I lost what it meant to me to be me) and I had to find how to learn to live with my injured and recovering brain and eventually I found a bigger and more whole concept of what it means to be to be me),
I lost my ability to do economics which I loved, and which I had invested many years training to be, so I had to learn how to do the things I could still do that I loved and do other things I loved and relearn what I could,
I lost my income so I had to learn to meet my needs with less income and less abilities to to provide for myself,
I lost control of my life so I had to learn to live life differently until I regained some control of the direction of my life,
I lost my athleticism and had to learn to rebuild those abilities,
I lost many of my friends so I found new ones and had deeper relationships with those who remained,
I lost my ability to be understood so I had to learn improved ways to be understood,
I lost my ability to think and so I had to learn to use others thinking to help me think and learn to use more of my senses as well as my brain,
I lost my life as I knew it but became a wife to Michael and a mother to Daniel,
And I lost many other things as well and have worked to regain what I could and be comfortable with what I haven’t yet regained.
Wow, what an interesting way to look at my journey. Thank you Eli!
And the question of what motivated me to want to get better was something I hadn’t really considered either.
The short answer, which is what I said to Eli, more or less, is that its painful and depressing to live with all the limitations to life that dealing with a brain injury brings and to be so dependent on others after one has experienced life and the freedoms and responsibilities of being an adult.
To be asked the question of motivation suggests that there was an alternative.
The alternative was to not get better.
And I must say, I never once considered not getting better to be an option. There was a choice.
I was depressed at times.
I was down. I felt suicidal at times.
I did not know how to get better often (sometimes on an hourly basis) and needed a lot of help learning how to get better.
But I never, ever considered the alternative of not trying to get better. It was a choice not worth making.
I am not quite sure why that revelation is so meaningful for me right now.
It just is!
And telling my story, helps me see my journey differently.
Thank you Eli!
Telling our stories, when we can, helps us with new perspectives on our journeys.
What losses have you had after your injury?
Have there been abilities or functioning or meaningfulness that you have regained with time?
What motivates you to get better?
Have you tried telling your story?