I have been trying to help a new friend who suspects that the symptoms she has struggled with for years, since age 16, are possibly the result of cumulative brain injuries during falls.
She found the article in the Washingtonian Magazine about my recovery and much of it seemed so familiar to her that she reached out to me. www.washingtonian.com/articles/health/i-wanted-my-brain-back/
Because of my own struggle finding appropriate rehabilitation, and my own health and functionality improvements when I did get to rehabilitation, her story touched me.
You see, many years ago, I remember reading Dr Claudia Osborn’s book “Over my Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out”.
Reading her book helped let me know I was not alone. And I had felt very alone on the day I found the book at the Barnes and Noble on 18th and L Streets in Washington, DC.
I was roughly two years out after my injury, and I had just gone to see my neurologist and was feeling depressed as I sorted through the appointment in my mind. I don’t even remember what I felt depressed about but my guess was that I felt no one seemed to have the urgency that I felt was needed when it came to fixing my brain so that I could get back to work and get on with my life. I was desperate for answers and hoped that there would be something on the bookshelf that could help me.
When I say that I remember “reading” Dr Osborne’s book that is not quite correct. I remember the book, that part is correct. I just wasn’t able to do what I would call “reading” at the time. So looking in a bookstore for a book about brain injury wasn’t something I thought to do — I avoided books.
I couldn’t really read, and whatever you’d call what I was doing–looking, skimming, taking in what I could–I could not do more than 2 pages at most at a time.
While I cannot say that I was aware of what was wrong with me after my injury, I was aware that I couldn’t absorb what I was reading. I noticed that while trying to read Time Magazine in the waiting room for one of my doctors.
So looking at and taking in just a little of the text that Claudia Osborn had written made me sob. Not just cry but sob.
I felt that Claudia Osborn was able to articulate all the things that I would say if I could tell my story. I felt that she was telling my story even though her injury was different. And she found access to doctors and resources after her injury.
From reading her book, I knew that Claudia “got” what the injury was like and that she could describe it.
That meant there was at least one other person in the world other than me, who got it. And she could articulate in print what her experience was like. Which I couldn’t at the time.
So when my new friend reached out after reading my story in The Washingtonian Magazine, I wanted to help her get to good medical care. I wanted to help her so that her journey would be a little shorter and perhaps a little more efficient and a little less of a struggle than mine.
And, if her problems weren’t from brain injury, I wanted her to get to doctors who were knowledgeable enough to know that persistent symptoms following brain injury was not her problem, and not a doctor who wasn’t knowledgeable enough to clear her appropriately.
You see, in my journey, I have learned that some doctors really understand brain injury and patients are lucky to get to them. However, many doctors were not sufficiently trained and hence are not sufficiently knowledgeable about concussion or about persistent effects following concussion. Doctors who are not sufficiently knowledgeable cannot help a person who actually needs further medical care for their symptoms to get to the right place. Another frequent error that I have learned that some doctors can make is to tell the patient that their symptoms are definitely not a brain injury when they are not knowledgeable enough to make that determination.
How have I learned this? I have learned this through my experience first and foremost. Although I desperately needed rehabilitation, I had quite a struggle getting to it and there were many barriers and pitfalls along the way.
Getting to appropriate specialists and getting to rehabilitation turned my life around. So I am going to be brazen here and say that if I had gotten to that same rehabilitation earlier and in a more consistent and less piecemeal fashion, it would have been beneficial to me both in terms of my health, my productivity, my well being and my finances and my livelihood. (It would also have been beneficial to my health insurance company’s finances!).
I also know this from hearing countless stories from others who cannot find the health care they need, or worse, who are being told they are malingering, even as they seek care.
I also know this by talking to health professionals and from volunteering at the Brain Injury Association of America and talking with staff members at WETA/Brainline in Washington DC. I know it from my work with the American College of Rehabilitation Medicine and from my work with the Ontario Neurotrauma Foundation.
The researcher in me also knows that there are several academic studies that provide more objective evidence about the pitfalls of getting to care. However, citing those studies right now on this blog is a little of a leap of faith for me because I don’t have the memory skills to find the studies and I am still struggling with learning what research I feel comfortable talking about and what I do not yet feel comfortable with talking about. I am still not very organized, and even 2 1/2 years after my move finding and citing the research is still a task that I have not had the time to master. However, I am hoping that providing research citations is something that someone will help me learn soon.
What I will say from my experience is that many survivors, just like me, do not know that they are not getting to appropriate care after mild traumatic brain injury. And it may well be the case that most survivors of mTBI do not get appropriate help. As I said in my speech at the Congressional Briefing in 2011, the estimates of the annual number of people with brain injuries that are not identified in the US exceeds the number that are identified. That is an astounding graphic! (I just looked for the graphic on the Center for Disease Control and Prevention (CDC) website and cannot find it, else I would post it!)
Many, like me, are not even counted in the statistics on mTBI. People with mTBI are not counted in the CDC statistics because we either were not treated in the emergency room or our injury was not identified in the emergency room.
Its impossible to study directly how well those who are not counted in the CDC statistics are treated, if at all, and how complete their recovery is or is not. I think that is a fair statement.