My Not-So-Mild “Mild” Brain Injury
A Perspective on Mild Brain Injury Recovery from Seven Years Out
By Anne Forrest
I don’t look like I have a brain injury
If you saw me, you might say to yourself that I don’t look like I have an injury. So you probably would not know I have a brain injury unless I told you so. Despite appearances, my brain injury has changed my life completely. I have not been able to work in my previous career – or even at McDonalds. After 7 years of a lot of hard work in rehab, and home exercises and life style changes, I am able to volunteer about 12 hours a week.
For many years, I had difficulty performing minimum requirements of daily living. Simple activities like dressing and feeding myself were very complex. The energy that it took for my brain to do these tasks was so great that seemingly minor activities could wear me out. Now, on an average day, I can accomplish advanced requirements of daily living with rest in between tasks and compensation strategies.
Although I am clearly getting better, my disability is there in every aspect of my life. I cannot drive, but ride the bus or get rides. I am accustomed to listening to the radio and books on tape, since absorbing what I read is not yet a strength. Simple mathematics are getting easier with re-memorization and practice. I do not remember things and can still “hide my own Easter eggs” as my husband says. In other words, many things I have done are still a surprise to me later.
Recently, I have seen some dramatic improvements in my memory and am able to think ahead to remember things that I used to have to use my cognitive strategies book to do. So something is really changing. I once faced tremendous limitations with getting overstimulated in normal environments like stores and public places. Now I can tolerate these environments in limited doses.
I could not watch a movie for the first two years. Now I can watch most mainstream films and recently went to Spiderman II with my husband. I had to close my eyes while he swung, but I enjoyed the movie. I could not use the computer for about the first three years, but now I can use basic functions. My exercise was limited to walking until about year five, but now I do some aerobics and practice with the soccer ball in addition to 2 mile walks.
My life before my accident: Where I came from brain-wise
Prior to my injury, I functioned at a high level. I am a Yale graduate and have a PhD in economics. I worked as a senior research economist at a nonprofit institute in Washington, DC. I loved to drive. I played competitive volleyball and coached youth soccer. I sailed. I was very computer literate. I had an active social life.
In my old job, writing and speaking about my research was a routine part of my day. Since the accident, I have had to relearn how to write—how to organize my thoughts in a cohesive way, how to develop topic sentences, and how to outline. I have required tremendous amounts of coaching and organizational help from my therapist and others. It has taken lots of trial and error, lots of revisions, and lots of persistence on my part. With each time I write or speak, it is easier – but this process still takes much more patience, time and effort than before the accident.
The process of recovering from a brain injury is the hardest thing I have ever done — tougher, by light years, than any other undertaking. It has been a “24 – 7” job which hasn’t allowed me time or energy to do much else. I expected to spend my late 30s/early 40s advancing in my career and raising a family. Instead, I am trying to get back to the levels of skills I had attained in elementary school, high school and college. I am trying to get my endurance back to tolerate all the mental activity required in a normal day.
What happened to my brain?
My injury occurred when an SUV hit me from behind while I was trying to merge onto the parkway near the Lincoln Memorial in DC. The impact caused my head to swing from side to side and forward to back. My brain hit against the sides of my skull like an egg yolk against the shell. Neurons in all areas of my brain were either stretched or broken. The old pathways my brain used to think and function were no longer connected. As a result, I was left with visual problems, balance problems, and a range of cognitive deficits affecting my short term memory, attention and concentration.
I was not taken to the emergency room by ambulance after the accident. While shaken, I appeared fine. The next night, I woke up with tell-tale signs of head injury – nausea, a really really bad headache, and chills. My colleagues at work advised me to see a doctor. When my symptoms worsened, my doctor sent me to a neurologist who diagnosed it as a traumatic brain injury. More precisely, I have a “mild” traumatic brain injury. My symptoms have been anything but mild.
I have had to learn how to be a different person. Who we are as human beings has a lot to do with how our brain functions. We are our brains. After the accident, my brain was different. I could not do most of the things that I enjoyed and/or those which gave me my sense of identity and self-esteem. So I have had to do a lot of growing to find a new me.
My very difficult path to finding appropriate rehabilitation
Living with such a debilitating injury is difficult enough. It was more difficult because there was no certain path, no roadmap, to recovery as one might expect with an injured arm or leg. I have had to find my own treatment and be my own advocate. The irony of this injury has been that the very organ I needed most to help me get the treatment I needed was my brain, the part of me that was injured.
I was lucky in that I was correctly diagnosed by my neurologist. However, as is typical for many, the diagnosis did not directly lead to appropriate treatment. My neurologist was hopeful that I would recover in the first six months, since 50% of persons with my injury recover in that period, supposedly. The instructions I received with my diagnosis were to try to get my life back.
Looking back, I can see that I was exhausting myself trying to return to work and my normal life. My brain thought I was the old me, and I did not know I could not succeed at my old life with my now-injured brain. I was told that what brain functioning I did not get back in two years, I would never get back. This was like a death sentence. I wanted my brain back.
For years, I cycled between barely staying afloat and devastatingly downward spiraling cycles. Looking back, I can see the pattern. I would get over-tired doing normal things and then wouldn’t be able to sleep because my brain was too wired to sleep. Then I would be more fatigued and experience worse memory, concentration, and thinking problems because of the sleep deprivation. I would eventually be too exhausted to get out of bed, which would lead to extreme boredom and/or depression. Then I would eventually get back on my feet for a while – until some unforeseen disruption in my schedule would set off this cycle again. It wasn’t much of a life.
Help and no help from brain injury professionals
After two years, I got to a well-known neuropsychologist in New York City who specialized in mild brain injury. He told me I needed to find someone who could teach me about my deficits and teach me better compensation strategies. It took almost another year to find the therapy he suggested because my deficits made it difficult for me to follow through. The system did not seem to be designed for someone with my deficits to get the help I needed.
When I found it, speech and language therapy helped me understand my deficits and develop awareness. I learned new compensation strategies, and learned how to pull out of the downward cycles before I went into a nosedive. I was 4 years out, and it was finally the beginning of my slow but consistently upward trend towards recovery.
During those first three years, I had to face a myriad of financial and disability insurance problems. This took significant time and energy away from finding treatment and getting well. It added tremendous confusion, stress, worry and pain. I went through my entire savings and hit rock bottom financially twice before things stabilized.
What it felt like to be me with a brain injury
Let me tell you what it feels like from the inside to be me. I talk about my relationship to my brain (post-accident) as that of a pilot looking at the gas gauge, oil lights and warning lights in a plane. Pre-accident, I did not have to read these gauges. My brain did it automatically. I had my breakfast, went to work, sat down at the computer and worked. I got in the car and drove.
Post accident, my life is being constantly aware of my brain functioning and knowing that I am very dependant on figuring out what is going on with all these gauges for my very survival. I am also aware that I get very different feedback from my senses than what I previously did. For example, the oil lights are constantly flashing “warning” and many of the other levels of the gauges don’t “look” or “feel” right. This is sort of a permanent state. When I go out to do my daily life, the signals in some of the gauges change. I may be aware that something is different or wrong but not know which of these functioning or mal-functioning signals can help diagnose what is actually wrong.
How I learned to cope
For me, I have learned not to rely as much on information from my eyes, because it is often wrong. I have to pay more attention to touch and smell because they are correct. Hearing is better than sight for comprehending a news report, but not trouble free.
Part of my recovery is learning not to be concerned if I get dizzy, because it will not create too many problems as long as I am not walking in a busy intersection. It is figuring out what situations to avoid, what not to avoid, and what is safe.
Three years later: A second round of helpful therapies at the rehabilitation hospital
When we moved back to DC, my doctors did another neuropsych test and I got 5 more months of Occupational Therapy and Speech and Language Therapy. During this time, I made tremendous progress on cognitive skills, advanced living skills, and endurance. I was also able to pass a driving screening test. My head to foot reaction time is now “within the normal range.”
Two years ago, it was in the bottom 10th percentile of drivers, and hence too slow to drive. Passing this test is measurable evidence that I am continuing to make progress, even after seven years. My progress was also so palpable that my friends and family could see it, and I was getting constant positive feedback, which makes the struggle to recover much easier and rewarding.
Rehabilitation (even for “mild” injury) has helped my functioning and quality of life
Having recovered as much as I have, I can tell you that the rewards are worth the struggle. My life is much easier as I have learned to tolerate and cope around my symptoms. It has been very painful to live in a world I hardly understood, could not express myself well in, and where I had to work so hard to get basic needs met.
Although I still cannot do much of what I used to be able to do, I know that with practice, I will get more back and I have hope for the future. I also have new interests and my life is meaningful. I have recovered the feeling of what my old athletic self used to be like. This feels great.
Recovering from brain injury is not an experience that I feel I could go through and not be profoundly changed by. I hope that I can use my experience to help improve the system and remove some of the obstacles to recovery for others.
By Douglas J. Mason, Psy.D.
Workbook for adults, veterans and families on mild traumatic brain injury and concussion symptoms with strategies and exercises for improving attention, memory and executive functions.