Interview with Barbara Webster; Brain Injury Survivor and Author
We are excited about our first installment – an “up close and personal” interview by Annie Pixley with Barbara Webster, who penned Lost and Found – A Survivor’s Guide for Reconstructing Life After a Brain Injury. Read what she has to say about her own experience as a brain injury survivor and as a facilitator for hundreds of support groups:
Lash: Why did you feel compelled to write Lost and Found?
Webster: I needed to educate myself. After my injury (20 years ago), there were no resources available for survivors of brain injuries. The first time I heard about “strategies” it was from another support group member and it felt like a “light bulb moment”, a little miracle. It gave me a tool to start figuring my way out of this terrible place I was in. It gave me HOPE. Figuring out strategies to help me do whatever I was trying to do became my MO, my method of operation. Figuring out tips, tools and strategies changed my thinking from “I can’t do this” to “HOW can I do this?” As a support group member and facilitator it became my mission to share strategies and this way of thinking with other survivors, to promote the concept of extended rehabilitation, to foster HOPE. I hope the book will help many more survivors in that way.
Lash: Looking back, what would you say made the biggest difference in your rehabilitation and healing?
Webster: I was so amazed to discover the existence of the Brain Injury Association and the support groups for brain injury survivors and their families that sprung up everywhere. Finding out that there were other survivors who were dealing with the same challenges was such a relief. Finally I was not alone in what felt like a death struggle. Then I learned about available therapies and started getting the help I needed. And once my husband attended a support group meeting and understood what I was going through, he became much more supportive – he got it!
Lash: Knowing what you know now, what would you have liked to have known then that could have made a difference in your healing?
Webster: I really wish the staff in emergency rooms were more familiar with brain injury protocol, specifically closed head injuries. It would have been so helpful to have information to refer to when my symptoms persisted. This could have minimized the frustration and despair we had with not knowing what was wrong with me or what to do about it.
Lash: Let’s talk a little about family dynamics. How did your injury affect your relationship with your husband and other family members? What about your career?
Webster: Outside of taking care of ME, my focus has always been taking care of my family. We already touched on my husband’s frustrations, and that after attending a support group meeting with me, he finally knew what I was going through. My son was young at the time of my accident and really did not understand the magnitude of my brain injury. As for other members of my family, they really were not involved with my rehabilitation. Some lived away from us, some chose to remain outside of the situation. Interestingly, though, I found that when I was able to help myself, I was then able to help others in my family.
Returning to work was out of the question. I simply was incapable of performing all the tasks related to my previous job. Instead, I started to lead support groups, which was something I found I was good at and could do easily.
Initially the injury turned our lives inside out, threatening our marriage and my ability to be a parent, as well as our financial stability when I could not return to work. In the beginning I could not do most of the things I used to be able to do, even every day tasks. We had to figure out new ways to function as a family as I figured out new ways to function as myself. We had to simplify our lives and my husband and son had to take on more responsibilities, become more independent. I was very lucky, my husband was supportive, once he understood more about brain injury. We began to work together to figure things out and it made all the difference. Many survivors are not that fortunate, creating a huge handicap for the survivor.
Lash: What about your sense of self?
Webster: It’s been quite a journey…20 years worth. I know that my rehabilitation and healing are ongoing processes and that every day I am recreating my life. I know that I have a strong support system for which I am always grateful. I now celebrate every little daily success and have found that simplifying my life has brought about a comfortable balance, most of the time. My family and I have all learned to be more patient and supportive of each other. I believe that my brain injury brought my family closer together.
Like many who have had a disease or injury, not being able to do everything I wanted to do caused me to re-examine my priorities and determine what was most important to me. I measure time and effort carefully, to this day. Not having much to spare, I try to measure what tasks are a good use of my limited energy. I live each day more deliberately, focusing on what is truly important to me and try to let the rest go without feeling like failure. It is really a gift, a gift of perspective not usually gained until late in life when you contemplate your limited time left on the planet. For me, like many who have had similar experiences, my focus became the important people in my life, my family and friends.
Lash: Any last words?
Webster: Have faith in yourself and don’t give up. Know that healing from a brain injury takes a long time and you have no way of knowing what the future will bring. Treat yourself like you would treat your best friend if he/she were dealing with a serious illness. Make time to do something that will make you smile, everyday!