By the time baby Daniel arrived, Anne Forrest — who sustained a brain injury in 1997 — “had been practicing having a baby for a long time.”
Anne Forrest doesn’t care about being a do-it-all supermom. She sees other mothers in her community rushing, juggling, stressing. “I have had to learn to respect my limitations. Having lower expectations is helpful — and freeing. I think this attitude would certainly help a lot of overwhelmed moms out there,” says Anne. How did she adopt such a laid-back attitude in these times of baby Einsteins and helicopter parents? In 1997, Anne Forrest, an internationally recognized economist with a PhD from Duke, was rear-ended by another car while driving. It was only a fender-bender, but like a switch being flipped, her whole life changed.
How can this be “mild”?
It was a lovely Saturday in June and Anne was running errands, navigating the tangles of Washington, DC traffic. Watching for her chance to merge onto the parkway, Anne craned her neck to the left. As she waited, a woman in an SUV hit her from behind. Both women got out of their cars to inspect the damage. Anne’s Acura had a small dent in the back, nothing monumental. After a police officer took an accident report, Anne drove on. She felt a bit shaken, but she looked fine.
In the next few days, she felt confused. She couldn’t follow what her boss was saying. She’d start dialing a phone number only to forget it halfway through. She felt cold, nauseated, and was experiencing the worst headaches she’d ever had. When she went to see her doctor, he told her she had whiplash. Two weeks after the fender-bender, while driving, Anne lost feeling in her right foot and right arm. That’s when she really started to get scared. She went to a neurologist who diagnosed her with a mild traumatic brain injury. It seemed that when Anne was rear-ended, her head was thrust front to back and side to side, shearing — or tearing — some of the millions of axons in the brain.
Her neurologist assured her that most people with a mild TBI were fine after about six months. But Anne, 39, was not fine. The six-month mark did not bring any reprieve. The once meticulous economist found she could no longer balance her checkbook or make a simple sandwich. Her headaches were worsening, her balance was off, she wore the same clothes day after day because it was too hard to figure out an outfit that matched. She’d sit on her bed and cry. Anne went on short-term disability.
Anne had test after test. All of them came back clean. Doctors kept telling her she looked good and that her issues — like short-term memory loss and her inability to retain anything she read — would pass. She needed to be more positive, to try to move on. Anne was not self-aware enough to notice her own deficits or to explain them more fully to her doctors. She started to think maybe it was psychological.
After more than eight years of piecemeal and uncoordinated rehabilitation, Anne was finally at a place of understanding in herself where she could look at the bigger picture of her life and where she wanted it to go. Since rehabilitation after a brain injury is slow and cumulative, those years of mismatched therapies, ironically — plus her tenacity to get better — helped Anne build the necessary foundation for her recovery. But what finally helped her fit together some final, large pieces of the puzzle was the help of a case manager from Brain Injury Services and cognitive therapy at INOVA Fair Oaks. Anne’s case manager and cognitive therapists helped her find strategies and develop skills. She kept lists and records of everything, and she planned scrupulously for each day. She learned how much energy she could expend or stimulation she could bear before she “expired.” One or two errands might be doable, three or four would leave her exhausted and buried under the covers in a dark bedroom for days. But most importantly, for Anne, the rehabilitation focused on life goals. Her goal was to have a family.
“Since my injury, I’d had a lot of time to think about my life and where it was going,” says Anne. “I had to look long and hard at what I really wanted now … now that I am a different person.” Because of the deficits from her TBI, Anne came to accept that she would probably never return to economics. That acceptance was not easy or quick; it was a real loss of self. “I felt so isolated after my TBI,” she says. “I had gone to countless doctors and specialists and no one could tell me what was wrong or how to fix it. I had no job, no profession. I was a wife, but I wasn’t a mom. I wasn’t like other people. Who was I?”
Anne and her longtime boyfriend, Michael, had married in 2001. Thanks to hard work on her balance in physical therapy, she was able to dance on her wedding day. The couple had been trying to adopt a baby for a long time — a little girl from Guatemala with whom they had visited on several occasions during a two-year period — but that effort fell through. In April 2009, Daniel, 4 months at the time of adoption, came into their lives.
The wheels on the bus go ‘round and ‘round
“I had been practicing having a baby for years, it seemed,” Anne laughs. In cognitive rehab, therapists taught her the skills she would need to be a good mother. She learned to plan ahead — from making lists and reminders for what would need to go in the diaper bag to keeping schedules for a baby’s mealtimes, naps, appointments, and possible medications.
In addition to hours of learning and practicing in cognitive rehab, Anne helped one of her neighbors who had several children. She helped bathe and feed her neighbor’s baby, play with her, read her stories, the whole nine yards. “It was great practical education before Daniel,” she says.
Anne was cognizant that some of her long-term issues from TBI would make motherhood challenging. Would she forget to feed or change the baby because of her short-term memory problems? Would she drop the baby because her balance was still not 100 percent? Would she jeopardize her baby’s safety because of her tendency to get fatigued or overstimulated? Instead of expending too much energy worrying or getting buried under “what ifs,” Anne trained and practiced her strategies. “I had so much support from these therapists who knew just what to do,” she says. “Based on my deficits and my goals, they helped me think through all the “pieces” to make my life work … that was empowering and a real boost for my confidence.”
Most importantly, Anne learned that to be a good mother she would have to take care of herself and honor her limitations. One of her biggest issues is fatigue. “I knew that having a baby entailed constant attention, which for me is very fatiguing,” she says. She understood that she would have to have help when she got tired or overwhelmed. She nurtured a network of support beyond her husband that would include babysitters and a mother’s day-out program a few mornings a week. By the time Daniel arrived, she had set up a schedule that included a rest time for her as well as Daniel, during which she could meditate, sleep, or simply lie down in a quiet, dark room.
In early 2012, Daniel will turn 3, and on most days, Anne has found a good rhythm with her son. “I love being a mom. Taking care of Daniel and playing with him has turned out to be great rehab for me! There is no better reinforcement than the smile on that little boy’s face.” As it turns out, cognitive rehab also gave Anne insight into child rearing she may not have had otherwise. “Cognitive rehab taught me about awareness of how I actually think. What piece of my cognition am I using now — attention, memory … ? Most people don’t think about how they’re thinking, and ironically, this awareness helps me with Daniel,” she says. “Babies are learning how to focus and concentrate. They get frustrated when they can’t communicate or get their thoughts out. They get cranky and tired when they are overstimulated. Having had a brain injury, I can understand all of this in a deeper way, I think, than people who have not had to rehabilitate their brain or to think about how they are actually processing information.”
Once a whiz with numbers, Anne is now a fierce planner. “After 14 years, I have a pretty good idea of what and how much activity I can tolerate in a day. I have learned by trial and error,” she says. “If I take Daniel to the park, I know that I can’t chit-chat with the other mothers and at the same time watch my son to make sure he’s safe.” She is learning to say, ‘I want to hear about this, but I’ll have to do it later. Right now I have to focus on my son.’ Anne laughs thinking how insulting and abrupt she may sound to other parents in the playground. “I don’t want to be unfriendly, but my job is to keep Daniel safe,” she says. “I am definitely a work in progress.”
She also knows how important sleep is. “I’m strict about Daniel’s nap schedule. I make sure he gets exercise and fresh air and then a nap,” she says. “I know that when I get overstimulated, I can’t sleep. It’s the same with him.”
Like everyone’s day-to-day life, Anne’s doesn’t always go as planned. Some days she gets headaches for no specific reason, or is extra tired. Sometimes she doesn’t have a meal on the table when Michael comes home from work. “I can’t multitask, I can’t split my attention,” she says. “I never answer the phone when I’m cooking, and when I’m watching or playing with Daniel, I can’t do anything else simultaneously. Some people don’t understand how much attention managing my attention takes. But, I know this about myself and although it’s not ideal, it’s the way it is. Sometimes I am just not on my game and I have to move to Plan B, which often involves asking for help.”
From a crawl to a walk to a run
One of the major steps in Anne’s recovery continues to be her increased awareness. From there, with time and effort, comes increased acceptance of her long-term issues from mild traumatic brain injury. For example, for several years after her injury, Anne, like many others with TBI, experienced intense irritability. “If we’re talking about irritability on a scale from one to 10, I could go from a three to a 13 in a split second. There was no transition from slightly annoyed to downright livid,” she says. The catch was that until she got cognitive therapy, she was not even aware of her irritability. She thought this anger came from the outside — from her husband moving something from one room to another without telling her to an unexpected change in her strict routine. “Rehab taught me I was irritable. I didn’t even know that!” she says. “I have learned not to put myself in situations that make me irritable and I know not to yell at others when I am irritable, but to take a time out for myself.”
This past summer, in July 2011, Michael got a job he was hoping to land in Austin, Texas, where both he and Anne grew up. Although the family of three is still settling into their new home, Anne already finds Austin an easier city to live in than DC. She grew up there and has family nearby, but she also finds navigating the public transportation system easier (she still does not drive) and building up a network of support and resources.
“As you can imagine, with a baby and a new house, things are a bit messy now,” Anne laughs. “I am trying to set up a house where everything has its place, but with a kid — and a mom with a brain injury — well, things don’t always get to their proper place. This will take time.” When she is more settled, Anne plans to continue her TBI advocacy work on the state level. Already, she enlightened a woman at church, a healthcare worker, who had a big bump on her head and a mild TBI. “I told her that she had to take it more seriously because if she didn’t there would be long-term consequences. She had to find a doctor who would take it seriously. Because of my experience, she listened.”
Anne says with humor — and irony — that she has seen the best and worst of rehab. “I want to help other people with TBI know that there is a rehabilitation system out there that can help — but it takes determination and persistence. When I finally got good help, I got great help. Cognitive rehab, especially, helped me figure out how to make my life work around my deficits. When I look at Daniel, I am incredibly grateful. I want other mothers with TBI, other people who feel stuck after their injury, to know that they can have a life. It might look different, but it can be amazing, like this little guy.”
And without Michael and his tremendous support, Anne says, she couldn’t do what she does. “We are a team. I don’t have to explain everything or anything to him. I can’t even put into words what Michael, and now Daniel, mean to me.” At 14 years post-injury, Anne has stopped counting. She knows there is no magical endpoint in her recovery; it’s forever.
View from the playground
“Sometimes I look back and think that I would have liked to have been an economist with a big career. I was on my way. But then I look at Daniel’s little face — his eyes huge with excitement as he spots a digger or a backhoe — and I think that life can’t get much better than this. I loved my career as an economist, but there are moments on the playground that I realize I might not have had if that woman hadn’t hit my car,” says Anne. “Life is never what we imagine, but on most days it’s better to get what we couldn’t have imagined for ourselves.”
Written by Victoria Tilney McDonough, 2011, BrainLine.