Authors

Barbara Webster

When a car skidded into mine on a slippery road in 1991, I felt very lucky. Although my car was totaled, I had my seatbelt on and I didn't have a scratch on me. I had blacked out only momentarily and I looked OK! The emergency room sent me home with instructions to take Advil.

I thought I couldn't think because I was exhausted and I was in so much pain. I had a severe case of TMJ or “whiplash”. I could barely eat or talk. As I slowly healed and was able to do more physically, I began to realize that I couldn't do anything mentally that I used to do so effortlessly. I was a wife and mother; I managed the household. I had worked in professionally in teaching, banking and health care. I was an achiever: multitasking, problem solving and organizing were second nature to me. Now I couldn't remember what I was doing. I couldn't figure out what to wear. I couldn't find my words. I couldn't remember what I was trying to say and if I got interrupted, it was like a train getting derailed, I couldn't get back on track. I couldn't follow the storyline while reading to my son or watching TV. Noise and confusion quickly overloaded and overwhelmed me; like a computer getting too many demands too quickly. But I looked OK!

I had been a home economics and early childhood teacher. Now I couldn't cook supper and I couldn't tolerate the noise and confusion of children. I was a banker and a bank officer and I couldn't hold 2 plus 2 in my head long enough to get 4! I had lived in Framingham for 20 years and I couldn't find my way around. But I looked OK!

My brain used to feel like a fancy multi-function copy machine, copying, sorting and collating all at once. Now, the harder I tried to do what I used to do, the more “meltdowns” and “shutdowns” I had. I thought I was losing my mind and I didn't dare tell anyone. I wasn't feeling so lucky anymore. But I looked OK!

Reality began to set in when I accompanied my son to an evaluation for school. I sat beside him, going through the tests in my head as he answered the questions out loud and I realized that he was doing better on the tests than I was! He was diagnosed with processing and memory problems. He was in second grade. But I was a college graduate!

Cautiously I mentioned this experience to my rheumatologist who had been my doctor for a long time. She said I needed a neuropsychological exam and fought my insurance co. for me. Finally, after nine months, I had the testing. I was diagnosed with a “mild” brain injury but I was told I was doing fine - I was figuring out my strategies! Imagine my dismay! During the testing I had related how I had figured out how to do grocery shopping again, a process that now took me 3 days.

I didn't feel like I was doing fine, quite the opposite. I was fighting depression. I had started seeing a counselor and when I asked her if she knew of any help for this diagnosis I had, her response was, “If there is any help, I would think the neuropsychologist who did your testing would have been obligated to tell you about it.” I still remember driving home from that appointment, many years ago. I almost lost hope. I thought I was going to go crazy and die. I contemplated suicide.

Fortunately, not too long after that, my son's school featured a speaker from the Brain Injury Association of Massachusetts at a parents' meeting. I had to investigate, even though I rarely had the energy to go out at night. As I sat in the back of the room and listened to this brave survivor speak, tears rolled down my face; finally I was not alone! I approached her after the meeting and she offered to take me to a support group. I was stunned, there is a Brain Injury Association in Massachusetts and there are support groups?! At the support group meeting, as I listened to other survivors tell their stories, I realized that some of these people were getting help, that rehab wasn't just for people with substance abuse problems and that I didn't have to go crazy and die, literally. Quick, please sign me up! They did sign me up and the therapists helped me begin the long process of putting my life back together.

Meanwhile, I took my husband to a support group meeting and he began to understand that I wasn't getting upset because I was mad at him; I was upset with myself and I had a problem, a BIG problem. During one of those first support group meetings I expressed my frustration about keeping track of what I was doing, even taking a shower! Someone in the group shared the strategy he used to help him remember what he was doing in the shower and it felt like a light came on in my brain! There was a way out of this terrible place I was in; there was HOPE!

Today, my brain can work like that fancy copy machine again - if conditions are optimum. I can do quality work again if I plan it, allowing extra time for fatigue and “bad brain days”. I have rebuilt skills and regained stamina. I am able to hear my intuition. Today, I can depend on myself again - if I plan and pace myself. Sometimes, when I am tired or stressed, I have to work like an old-fashioned copier; one page, one step at a time - but I can get the job done!

Today I am a lucky lady. I have had the privilege of facilitating the Brain Injury Survivor Support Group in Framingham since 1995 and I work part time for the Brain Injury Association of Massachusetts assisting other support groups. I get to do something I am passionate about and I get to work with good people. Brain injury survivors and the people who work with them are typically quality people, people who aren't focused on superficial things. Best of all, I get to witness survivors take steps in their healing process and move forward, knowing that my work has helped to play a part in their progress. What an honor! Today I am a lucky lady!