Concussions and their potential for long-term side effects are having a moment in the news lately. Anne Forrest, an Austin mom and prominent advocate for survivors of traumatic brain injuries, spoke at this year’s SXSW just one day after a promising linebacker from the San Francisco 49ers announced his early retirement from football. The athlete, Chris Borland, is walking away from his career to essentially protect his brain, and to avoid the kind of injury Anne has lived with for nearly 17 years.
It was a minor car accident that changed Anne’s life and altered her brain into something she is still trying to understand. When her vehicle was hit at low speed, Anne was looking left at a Washington, D.C. stoplight. The collision caused her head to swivel from left to right, then forward to back, but that was it. Anne was otherwise okay, and even drove herself home.
At that time, Anne was a senior economist at a Washington, D.C. think tank. She earned a Ph.D. in economics from Duke, and an undergraduate degree in the same subject from Yale. But after her car accident, she found that it takes much less than being knocked out in a football game to end up with a brain injury.
Anne describes her concussion as an ambiguous loss. The car accident left her with a concussion, also known as a mild traumatic brain injury (mTBI), but it was not immediately apparent. In fact, there’s nothing obvious about most brain injuries.
In the weeks following Anne’s accident, normal tasks started giving her trouble. She couldn’t comprehend a magazine article, dial a phone number or add up her work time sheet. She never returned to her job full time, and instead committed to retraining her brain to do things such as reading and driving. One of the many challenges for Anne over the years has been to find a team of doctors who not only specialize in brain injury, but understand its persistent symptoms. She may look fine, but in reality, she is constantly compensating for her injured brain.
Speaking at SXSW last week, Anne covered what she’s learned about her brain and the strategies she uses to deal with its sometimes erratic behavior. The lessons are applicable to people without brain injury. An increased understanding of the brain, she said, means you can use it more efficiently. “It’s also the key to emotional intelligence,” Anne remarked. “The more you understand who you are and how things work, the better your expectations are of what you can do.”
Since the accident, she has become incredibly self-aware, developing an understanding of the effects high and low cognitive tasks have on her brain. This process has revealed to her that any kind of decision making can require high cognition. Anne explained that attention, concentration, is the key to being able to learn in our very distracted society. “What I know now is repetition — practice, practice, practice — actually changes your brain,” Anne said.
Anne and I met recently to talk about her journey to understand her injury and navigate life since the accident. During our conversation, there were moments when she had to pause to collect her thoughts. Being interviewed is in the category of higher cognitive tasks that are more taxing for her. We talked about the emotional tolls of her injury, how she has coped with it, and how she knew she was ready to become a mother.
Anne and her husband are the parents of an adopted 6-year-old boy who came into their lives when he was 4 months old. It was going to be a big week for her. Her speech at SXSW was the first she’s given to an audience that was not comprised of people affected in some way by a brain injury. Our conversation follows…
Q: It’s a few days before your speech at SXSW. How are you doing?
A: My brain over the last couple of days has really been going. If you think about an injured brain – the thing your brain is telling you to do is not tell people your brain is injured. Stay away from people who could take advantage of you. I have really had to talk myself through that part. We are hard wired to protect ourselves.
Will you explain what happened to your brain in terms I can understand?
The brain is in this fluid and it hits against part of the skull and the belief is that you are stretching these neurons. All these parts of the brain are constantly talking to each other and all of a sudden, they are stretched in this way that signals can’t connect. With concussion, one of the reasons why it’s so troubling for doctors is that not all of our telephone wires are broken. And sometimes things make it across those wires and figuring out what isn’t working is a long process. The problem is, complex tasks can’t be measured. You look good on a test and then you go home and you can’t figure out how to do something really complicated.
Explain some of those challenges.
I lost depth perception. I was bumping into a lot of things, but I wasn’t aware of that. My legs were certainly telling me. Because I was an athlete (she played volleyball in college), the physical therapists told me that my (ability to) balance actually disguised it.
The issue with reading was my eyes wouldn’t focus on the right thing. Somewhere in my brain, I knew where words were, but it took so much energy to focus my brain. I couldn’t read efficiently. If I was tired, it would not go into memory. It took me awhile to understand the whole energy thing.
It has been a slow discovery of things, but it’s intermittent. You go from not being able to do something to being fine.
How did the injury affect your career as an economist?
I tried to go back to work and they asked me to leave when I couldn’t fill out my time sheet. I have never held a full-time job (since). I can do bits and pieces of things and I can do them when I have as much time as needed. I haven’t figured out a job to do on a consistent basis, because there is a lot of variability with me. That doesn’t mean that I haven’t been able to do some really interesting stuff. It’s just that I have to mind my brain in order to do it.
Your intelligence, your career, they were a big part of your identity, correct?
My career – that’s been a big loss – a huge loss. It’s been a long process of grieving. Early on, it was really tough. My friends were moving on with their lives – getting honors, having kids, and I felt like I was in this no-man’s land where no one quite knew what was wrong. There was this long period of not quite knowing what was wrong and me feeling like I was going to go back to my job.
Often the misconception of brain injury is that people think you are dumb. They don’t understand that it’s losing your cognition – your attention, your memory, your ability to learn. You might have a harder time getting your IQ out, because those structures aren’t in place, but you didn’t lose your smarts.
How do you navigate everyday life?
I have a lot of compensatory strategies, which means that I’m able to manage my life pretty well. But, as a mom, with a kid, there are a lot of times that you simply don’t have time to do all the things you need to do (to prepare). I have to plan a lot more for ups and downs and some, with being a mom, you can’t anticipate.
So many things in life we go and do without really preparing. I know that if I wing it – that is going to be really problematic. I winged it a lot in life beforehand. As a Ph.D., you are trained to do it by yourself. You think your brain will get you out of every situation.
How did you have the strength to continue?
They taught me resiliency at cognitive rehab. I was taught how to stay on top – how to deal with the ups and downs of life. The skills are useful to anyone, and for me they were critical. I just knew I couldn’t afford to get depressed. If life is getting better, that’s OK. I could say tomorrow will be better. I feel like I had no choice. Sitting on the couch and eating bon-bons was not a life I wanted to live and you know, a lot of people commit suicide. They just can’t handle it. I was fortunate that I could. I had hope – I knew I was getting better.
How did you know you were ready to be a mom?
My neurologist had to sign off. He was very affirming and that was great. He was funny – he told me I was going to be a great mom and the reason I would not be a good mom was not going to be because of my brain injury.
What strategies did you have in place to prepare for your son’s arrival?
I had spent so much time practicing. My neighbor next door took me under her wing – she had four kids. I’d come over and practice bathing her kids. I was probably the best prepared mom. For me, I have to do things through practice over and over. I had a lot of people who told me to call them. I had so many people who wanted me to have a kid and were saying ‘you need to do this and this in order to be a good mom.’ I didn’t feel like I needed to do it alone. That’s a gift of having this injury. I know how important it is to ask for help and ask for help at a really basic level.
Are there other gifts your injury has given you?
Learning how to compensate around your brain really makes you a much more whole person, because other people know a lot of things that you don’t know and that can help you. I couldn’t make decisions very well. I started asking people for their opinions and I was a much better decision maker. There are a lot of perspectives that you wouldn’t have thought about yourself and you can incorporate them. And that’s helpful as a mom, because you learn a lot from other mothers. Moms are learning a lot of strategies – what things to pull out of your quiver. Other moms are seeing it differently and they can say ‘have you tried this arrow?’
What are you like as a mom?
Because I learned a lot about development…I feel like I am able to understand the pieces of development that are trying to happen (with her son) and understand when the frontal lobe is just going nuts. When he’s hitting or having trouble expressing his emotions, because he doesn’t know what to do with them, I feel like I can see (what’s going on) more. I practice the Love and Logic way (a parenting book/class) – choices, empowering, trying to teach independence. I’m aware that practicing strategies takes a lot of energy and attention. I give myself a pass when I don’t have either. Often, moms feel like they can do this all day and then have a great dinner or go out. My expectations of my abilities are different.
Are there strategies you have for caring for your son?
One of the things I knew is that I couldn’t divide my attention very well. And so, for me, I really have to focus on my child and that meant very little conversation with other moms at the same time. I was really conscious of that for a long time.
I often have to plan ahead of time and I’m often planning incredible details that would have been automatic before my injury. And to some extent, because they are not automatic and they are at a conscious level, sometimes I can think through things much better than other people.
I have a pretty large support network. I have had to build that ahead of time. I have a go-to list of moms I can call, my husband compensates for me and I have a stable of sitters.
What do you hope your advocacy work will change?
I would really like to see people get better faster. There are a lot of problems with people not getting therapy. The people I have helped get therapy are in and out fairly quickly. For me, a lot of the problem was that I couldn’t get the right healthcare with the difficulties I had navigating the system. To know that just telling my story, it’s helping other people.
Where do you see yourself five years from now?
I have to live pretty day to day. It’s more difficult for me to think about the future. I hope to do patient advocacy or consulting. I have to stay in the present – that’s a huge gift to have to live in the day and see what tomorrow will bring. It’s a great gift for my son, too, because that is where kids are living – in the present.
To learn more about Anne’s story and her advocacy work, visit her website at www.aplasticbrain.com.
If you know of a mom who could be featured in this series, reach out to Abby on Twitter @AbbyRoedel.