On Sunday I went to retrieve a quote that I knew was in the downloadable Traumatic Brain Injury Survival Guide by Glen Johnson, PhD. I had not yet read the Guide so I decided to kick back and read a bit of it.
Wow! I was not expecting to be so impacted by that simple book. It was enlightening on one hand and jarring on another.
You see, until very recently I have not had anyone helping me through this MTBI maze. I present well and I did not have words to explain what was wrong so I was missed. I am only now slowly getting to the right specialists. Slowly because I am getting governmental help and the wheels do turn slowly!
As I go along I have been trying to glean information about what is wrong and what I can do about it. The Neuropsych exam was tremendously helpful in diagnosing the specific impairments. The two appointments with the rehabilitation psychiatrist (over a 5 month period!) have also been helpful. I am now waiting for an appointment later in May at the CORP TBI clinic at Harborview. (CORP stands for Comprehensive Outpatient Rehabilitation Program.)
So what is the Wow!? A lot of the Wow! was that so many things finally fell into place. Johnson described so many of the things that are going on for me; and have been for years.
I will intersperse quotes from the TBI Survival Guide with the impact it has had on me.
“In head injury, individuals with frontal lobe impairment seem to lack motivation and have difficulty doing any task that requires multiple steps (e.g., fixing a car or planning a meal). They have problems with planning.”
That quote nabbed me because it explains a lot of what goes on for me. I am definitely having trouble with lack of motivation, ambition, drive, etc. And that is so unlike me!
Now people who know me and know how doggedly I am pursuing getting help for this old brain may laugh at me saying I am lacking motivation, ambition, and drive. But the reality is I would almost be happy sitting on the couch and staring out the window all day.
The other thing that impacted me is I very clearly remember after the 2002 car accident that I could sit and do nothing for hours. At the time I was just amazed at how calm and peaceful I felt. I had recently left an organization that involved a lot of meditation and personal growth work. So I interpreted the change through the lens of that teaching. It never occurred to me to tie this change in my behavior to the car accident. Or to realize that calm and peaceful also included lack of drive, motivation, and ambition, and lack of being able to plan – which planning is necessary for there to be drive, ambition, and motivation.
In fact, Johnson goes on to give an example a little later “I've had some family members say "You know, the head injury actually improved him, he's not such a hot-head anymore." If you listen very carefully, you're also going to hear "he's not as motivated anymore." Remember, the frontal lobe plans activities as well as controls emotions.”
The worst thing about having a brain injury is having a brain injury! Obviously, I am saying that tongue in cheek, but it is also true. When I look back at all the things that I was doing to try to cope I am amazed that I did not know something was very wrong. But the brain has to be working right in order to make an assessment like that.
“The frontal lobe is also involved in organizing. For a lot of activities, we need to do step A, then step B, then step C. We have to do things in order. That's what the frontal lobes help us do. When the frontal lobe is injured, there is a breakdown in the ability to sequence and organize. A common example is people who cook and leave out a step in the sequence. They forget to add an important ingredient or they don't turn the stove off.”
Here I was rewriting recipes and highlighting the steps so I could follow them correctly; taking any kind of multi-step instructions and having to break them down into the smallest increments and then cross them off as I did them and refer back to the instructions over and over and over . . . but I never told anyone that that was how I was coping. It just never occurred to me! That seems so silly now.
Another interesting quote is “After you get a head injury, short-term memory isn't working, so information has a hard time getting to long-term memory. …People with head injuries have also told me "you know, time just seems to fly by." The little events of the day are sometimes forgotten, making life "fly by" when you look back at events that have happened since the injury.”
I have lived back here in Washington for 6 years now. Where did they go? My experience is not exactly like the above description. It is more like it takes extra mental effort to make sense of time. Otherwise my time sense is somewhat jumbled. For instance I have to logically think through year by year to have it make sense that a child who was in elementary school when I arrived here in Washington is now in high school.
I am getting short-term memory into long-term memory but not easily laid out chronologically. I have to use chronological landmarks – like something obvious that happened in a specific year – then I can put things in their proper perspective.
I stopped reading the TBI Survival Guide at that poin because I had taken in about as much as I could handle in one sitting. I just ordered a book called Brainlash: Maximize Your Recovery from Mild Brain Injury so there will probably be more posts about "Enlightenment" to come.
I do not have time right now to do the footnotes right so this is going to be quick!!
- The wonderful pictures on this post are cards by Susan Mrosek. Check out Susan's whole line of cards at PonderingPool.com. The cards are used with permission. (Thanks again, Susan!)
- The TBI Survival Guide is linked above (and will be here too soon.)
- Brainlash is linked above. Please note that I have not even looked at this book yet. A friend told me about it. I just ordered it from Amazon.