Awareness and mild traumatic brain injury/concussion

After my mild traumatic brain injury, I was not aware of my injury.

That is an understatement.

When I look backwards, I can see that my lack of awareness about my injury made my interactions with primary care doctor more difficult.  In my speech at the Congressional Briefing in 2011, I used the phrase “unbeknownst to me to describe my lack of awareness about my symptoms.

In that speech for Brain Injury Awareness Day, I go on to describe that “unbeknownst to me, I had the following symptoms.  I had a second grade math level, a third grade language skills level, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability.  I couldn’t absorb what I was reading, and I had difficulty with social cues”.

Years later, its amazing to me that I functioned for years with those symptoms (and others).

But, I did.

Why did I have to?

That is a complex question that I still cannot completely answer.

But I want to take a stab at answering it now with years of recovery (and advocacy) under my belt.

In this post, I want to talk about my own lack of awareness of my injury as a factor.

How aware was I of my injury?

Well, I knew something was wrong.

But I thought of myself as an articulate person because I was an articulate person before my injury.

If I had any expectation at all in my mind, my expectation was that whatever was wrong with me was temporary and would go away.

Plus,  I loved my life as it was.

I expected it to continue, as it was.

That is,if I had given it any thought.

I did not give it any thought.

I went to the doctor because I had headaches.

Frankly, I don’t think I would have gone to the doctor on my own.

Luckily for me, my colleagues at work said, I should go to the doctor because I was in a car accident.

They said to me that I had never complained of headaches before and that my headaches could be related to the car accident.

That was logic I did not have on my own.

That might tell you something right there, but it did not register for me.

And I was not the type of person who was going to let a headache get in the way of me living my life!

Looking backwards, I did not have awareness of all that had befallen me.

And unfortunately, neither did those around me.

One of my colleagues recommended a doctor to go to.

My colleague had fractured his skull in a bike accident and his doctor had helped him with his concussion recovery.

I made an appointment to see his doctor.

I went to see the doctor because my colleagues were telling me I should.

I didn’t have a “go-to” primary care doctor who knew me.   I didn’t need to have one.

What that meant was that my new doctor did not know me pre-injury.

If I had been aware of my injury, the outcome of going to a primary care doctor might have been completely different.    We will never know.

But I wasn’t.

Other than the one symptom — the headaches — I am not sure that I had anything else to tell my new doctor about why I came to see him.

From his point of view, I am sure that I looked fine.

Let me repeat that.  

I looked fine.

Looking backward, I can see what a mismatch in terms of expectations and knowledge that my first encounter with my new primary care doctor was.

Looking backwards, I don’t know how aware my doctor was of possible other symptoms of mild traumatic brain injury/concussion at the time.

I was only presenting to him (telling him) that I had one symptom.

That one symptom was all I knew I had at the time.

It was also all I was telling my colleagues because it was all I knew.

The other part of the knowledge mismatch was that I thought my new doctor knew all about what to do for a concussion because he had helped my colleague.

I did not know what a concussion was.  I don’t think I even knew the word then.

But, the most important thing about that is that I thought he did.

My new primary care doctor appropriately told me to proceed with caution which I did.

That meant that I did not start playing volleyball on the sand courts by the Potomac river at the bottom of the Mall (the park where all the Monuments are) in Washington D.C. that week, even though I had been looking forward to the sand volleyball season to start for months.

I don’t remember what he told me about my headaches, but I think he told me to take aspirin, when needed.

I went back to work and I went back to my life.

I believed that I was taking appropriate precaution and that everything would be fine.

Boy, was I wrong.

Looking backwards, I can see that lack of awareness is often a part of the injury, in my case and for many of the people I meet with the injury.

From my vantage point, lack of awareness can stand squarely in the way of getting to appropriate care.

Read More - Awareness and mild traumatic brain injury/concussion

The Value of Rehabilitation

I spoke at Brain Injury Awareness Day 2011 in Washington DC.    I was the first civilian (non-pro athlete)  survivor to speak at the Congressional Briefing.  I received a standing ovation.

Other briefing panel members included: Brigadier Richard W. Thomas, Army Surgeon General; Colonel Jamie B. Grimes, Director Defense and Veterans Brain injury Center; Kathy Helmick, Deputy Defense Centers Excellence for Psychological Health and Traumatic Brain Injury; Patty Horan, Wife Of Wounded Warrior Captain Patrick Horan; Dr Lisa McGuire, Research Team Leader, Division of Injury Response, Centers for Disease Control and Prevention;  and Dr Allen W. Brown, Mayo Clinic.

Here is my Statement.

I was introduced as Dr. Anne Forrest, TBI Survivor and Advocate, formerly Senior Economist at the Environmental Law Institute.

The Topic for the Briefing was The Value of Rehabilitation and the Road Ahead


I’m a survivor of traumatic brain injury. I’m honored to be here. I’m up here representing 1.7 million people who get TBI each year and are correctly diagnosed in the emergency room with TBI. And I’m  also representing more than 1.7 million more people who are either NOT correctly diagnosed in the ER or who never make it to the ER. I’m in the latter category. Combined, that’s more than 3 million, or one out of every hundred, Americans who get TBI each year. Some get rehab, some don’t. Some get better, some don’t.


In representing this population, I know that I have big shoes to fill, but I have worked hard to have the skills to fill them.


I’m going to tell you about my accident and recovery. If there’s anything I want you to know, it’s how much I needed rehab, how astoundingly difficult it was to get it, and how dramatically it changed my life for the better once I got it.


Prior to my injury, I got my B.A. at Yale and my Ph.D. from Duke, and I came to Washington to work as Senior Economist at the Environmental Law Institute. I was a varsity athlete and an Ivy-League champion, still played competitive sports, and had an active social life.


I was rear-ended in a car accident in 1997 by the Lincoln Memorial. I was coming across Memorial Bridge from Virginia and merging into Rock Creek Park. My head swung from side to side and back to forth. Neurons in all areas of my brain were either stretched or broken. I drove away from my accident.


After my accident, unbeknownst to me, I had a second grade math level, third grade language skills, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability. I couldn’t absorb what I was reading, and I had difficulty with social cues.


What troubled me most about my symptoms was that I would get over-stimulated in normal environments. The over-stimulation would lead to sleep problems, and I’d find myself in a downward cycle with worse cognition and a depressed immune system. I was working really hard to keep my life from going from terrible to worse.


My journey to rehabilitation was long, exhausting, and often quite depressing. I was diagnosed within six weeks, which was very lucky, but I had tremendous difficulty getting to rehabilitation. My first rehabilitation was actually with an optometrist who helped me with vision therapy because I couldn’t read. That was tremendous but not enough. It took me three-and-a-half years to get to appropriate rehabilitation. That’s almost the time it took me to get through college. I got attention, memory, speech training, and executive function training. Known as cognitive rehabilitation, these are the building blocks of thinking. Rehab began a slow and steady path to recovery that eventually turned my life around.


Because of rehab, I can read, I can watch fireworks, I can follow the plot of a movie. But most importantly, rehab gave me five gifts for which I’m most grateful.


Because of rehab, I have more independence and am in charge of my own life. I use my cognitive strategies daily. I must use them or else I cannot function, and I function with lots of support from my husband, friends, and community.


Because of rehab, I have my smarts back. Vision and cognitive therapy allowed me to manage my cognitive issues so I could think again, and my economics training came back. I had worked so hard to get my training.


Because of rehab, I learned to take care of myself well enough to be able to take care of someone else. I’m a mom of a two-year-old now, who’s truly the joy of life for my husband and me.


Because of rehab, I have something you are watching right now. Rehabilitation gave me the groundwork for rebuilding my ability to speak publicly. It was in rehab that I learned that public speaking was the only job skill I still had.


When I first spoke, I didn’t know what I was saying unless I was reading it. Now, I can look at my audience.


I was told repeatedly that I would never get better after two years. And yet, except for the vision training, all of my other rehab and all the gifts that came from rehabilitation came after two years. Because of rehab, I’ve witnessed my brain’s ability to change, restructure, and re-wire. This is called neuroplasticity. Neuroplasticity is incredibly powerful.


Without rehabilitation, I don’t know where you’d find me, but possibly I would be in some gutter. The phrase “There by the grace of God go I” means a lot to me.


As a result of rehab, I’m a wife, I’m a mom, my life is meaningful and productive, I’m giving this speech, and I know all about neuroplasticity.


I have a PhD but I’m not a researcher now. Honestly, that’s a little hard for me as I sit here on this panel today with other PhDs and MDs. I will always wonder where I’d be if I had gotten to rehab earlier.


But I can tell you that rehab dramatically improved my life. It changed my life for the better, unequivocally and uncategorically. Notice that I’m able to use the big words now. Rehab has given me a meaningful and productive life back.

Read More - The Value of Rehabilitation

Helping others by providing the information that I wished I had gotten when I had my injury

I had written a draft post earlier this week about what I would have wanted to know after my injury that I was struggling with.  Then some things came up that grabbed my attention.  It occurred to me this morning that perhaps the best thing I could do was let that draft post sit and eventually it will come to me how to say it.
I wanted to post the following statement that a new friend wrote about me for my website because it introduces my advocacy well.  In fact helping others with their journey to recovery, one-on-one, has taught me alot about what people need to hear following a concussion.
Here’s what my friend wrote:
“I first met Anne several years ago when she moved back to Austin and joined
the church where I am a member.  Anne is smart and outgoing and she became
an instant friend.  When I learned more of Anne’s story, I was even more amazed
by who she is as a person.  Several months ago, our nephew had a serious closed
brain injury.  Anne was one of the first people I called.  She was a wealth of good
information and she shared numerous helpful resources.  However, what I most
appreciated about our conversation that night were her encouraging words and
positive outlook and her emphasis on hope.  Our nephew thankfully is well on the
way to a full recovery.  I am grateful for Anne’s friendship;and I am especially thankful
for her continued sharing of her gifts and experiences researching and working with closed brain injury patients.”
                                                –  Martha Richardson
Martha had called me because her nephew had had a concussion during a bike accident.  She told me that the family was concerned by what they had heard from the MD whom they saw.   They heard that there was a 50/50 chance that their nephew might be permanently disabled by the concussion after two years.   I was hearing what had been said third hand. So I don’t know what was actually said.   I do know what they heard and how much it concerned them.
And, I knew that I wasn’t hearing about any recommended treatment.    In listening to survivors and family, I know that its often missing.
When I probed about it,  I heard that the patient and family hadn’t been told about what  treatment would be helpful NOW to improve the odds that the patient would get better and wouldn’t be disabled two years from now.
I know firsthand the importance of early treatment for concussion.   I didn’t get what I needed early on.   I will always wish I had.     So I gave advice to my friend based on my experience.   I suggested to her that the family might want to get a second opinion with one of the doctors and/or programs that have helped me here in Austin.
It makes me feel good to hear that my friend’s  loved one is “well on his way to recovery” having followed my advice.
And, there are two other resources that I always tell people they should consider further for information:
The information line and website at the Brain Injury Association of America:
The second one is a book call “The Brain That Changes Itself”   By Norman Doidge.  This is a tremendous book on neuroplasticity our brain’s ability to rewire and grow.

Read More - Helping others by providing the information that I wished I had gotten when I had my injury