Assessing Retrograde Amnesia: Nancy Part Nine
Throughout TBI Voices, we have been assessing retrograde amnesia and post traumatic amnesia (also called anterograde amnesia) in each survivor. That is considerably more difficult with Nancy, perhaps because she was a child, perhaps for other motivational reasons. Regardless, what she reports in assessing retrograde amnesia is probably far greater than what she actually had, but the way in which she reports it, does provide some interesting insight in the difference in how a child might respond to these questions, versus an injured adult. Thus, I will include most of my interview on that topic:
Nancy’s Take on Assessing Retrograde Amnesia
What happened to you?
I was in a car accident when I was 9 years old.
And we’ve talked to your Mom and we understand that you had surgery, they drove you fast to Madison, you were in the hospital for 36 days. We assume you don’t remember anything that happened after the moment of the accident until sometime well after that. Do you remember anything of the days before your accident in assessing retrograde amnesia?
No, but I remember something like three years before the accident.
You were doing something with beagles that weekend. Do you remember having ever done that, going to beagle shows or what was it you were doing with the beagles?
Beagle trial. You put them in a pen and they run around after rabbits.
So they actually do something, they don’t just look pretty.
Do you remember going to the beagle trial that weekend?
Do you remember the Christmas when you were 9 years old?
Do you not remember it because nobody’s asked you about it before or do you think you’ve lost that memory?
I think I’ve just lost it, I can’t remember what happened when I was 16 years old.
Do you remember anything that happened in the fourth grade?
I wasn’t in fourth grade.
What grade were you in?
Well, I was in fourth grade but I didn’t get to take the class because I was in the hospital the majority of the time.
But you were in fourth grade from September until February 1st, correct?
In assessing retrograde amnesia do you remember any part of fourth grade before your accident?
Do you remember who your fourth grade teacher was?
And how do you know that?
Do you remember actually being in class with her?
No. But I remember Mrs. Cashon taught us how to speak a little French, it didn’t work very well, she didn’t even teach us any.
So why does that mean you know who your fourth grade teacher was?
Well, I visit, I visited her with my Mom and gave her a senior picture.
And she remembers when you had your accident?
Again, in assessing retrograde amnesia, you don’t remember being in the hospital in Madison?
Now, you had to go back to the hospital in Madison in the summer of 2003 for another surgery. what was that surgery for?
I have no idea. It was probably to clear something up with my brain.
Did they go in and put some pieces in your skull?
Do you remember having that surgery?
Do you remember coming home from the hospital when you had that surgery?
Do you have any recollections of having problems with your vision?
Yes. I used to have blurry vision in my left eye because I have a scarring on the cornea.
Tell me about what you remember how your vision problems.
It was blurry.
How long ago was that?
When I was 11, 12, 13, even when I was 10 it was swollen shut because my head was so swollen I couldn’t shut my left eye and it was, it could have come out of my head.
Is your birthday on Valentine’s Day?
What day is it?
The 12th. Two days before, almost a Valentine’s baby.
And you were in the hospital on your 10th birthday?
Do you remember your 11th birthday?
Who was your fifth grade teacher?
Do you remember going back to school the first day?
So you were off school all of fourth grade after your accident. And you had the summer. And you would have had your surgery during the summer, but you don’t remember going back to Madison for the surgery?
I remember having a tutor come to my house and teach me some stuff.
So that would have been before you went back to school then?
What do you remember about the tutor?
She was really nice. St. Patrick’s Day she left me a little present on my doorknob full of candy and stuff like that.
Okay, that sounds interesting but what St. Patrick’s Day? (Asked because she didn’t have a tutor by March 17th on the year of her wreck.)
A long time ago –
Were you still having a tutor after you started fifth and sixth grades?
What your mother told us is that you had a tutor to help you finish fourth grade.
Did you have her in fifth grade?
St. Patrick’s Day would have been six weeks after your accident and you wouldn’t have met your tutor yet on St. Patrick’s Day of 2003, would you?
No, this was like 2004.
So it would have been after she was coming to your house on a regular basis to tutor, she came back and left you some things?
Do you remember her tutoring you at all?
I remember we were reading a book about a Russian girl that couldn’t go to America because she had worms, I think it was.
You went to a different school in sixth grade, middle school?
The grade school that you were in was combined with a couple of other grade schools so there were more kids when you went to middle school?
What do you remember of starting middle school?
I didn’t like my special-ed teacher, he was really mean.
Why do you say that?
He made me cry, he called me a cry baby and a two year old.
When you went to the new school, that’s a pretty big event, going from the grade school off to the middle school; do you remember that? Do you remember the first day of middle school?
Do you remember starting high school?
Tell me about starting high school.
Well, it wasn’t really much different from my from the middle school since it was like just next door. But they had recently built a new building and I was the first year of kids that got to go into the new building.
So you got to walk into a brand new school?
What was that like?
Really, really, really, really big, I’ve never been in a school that was more than one floor.
Did that cause you any anxiety or concern?
Nancy’s reports of amnesia were so much worse than seemed intuitive, that her mother who sat through this interview, had some comments on them when we finished Nancy’s interview:
You had a couple of thoughts that you had while you were watching your daughter. What was surprising to you about what she said when we interviewed her?
I’m surprised at her lack of memory even after the accident. The way she doesn’t remember when she was 16 and I was very surprised about that. But she could quote you things during those time periods. I was surprised at that and how she kind of waffled and went back and forth but I think she realized all of the sudden – well I guess that was during my fourth year, or my fourth grade or my fifth grade. I think she was catching herself, it was like realizing that she… The timeline process like you were talking about was, was not, crucial to her before the accident so therefore it wasn’t crucial to her maybe after.
She doesn’t seem to have a concept of time and years.
That is true. The time, time and years and dates. She could quote you all the trivia stuff and the Jonas Brothers though, couldn’t she? Yeah. And, but she can quote you anything trivial. That’s her biggest, her funniest thing are things in a book that are about a paragraph long that teaches you about the bullhead shark.
Almost savant like?
Yeah, it’s amazing how she can remember things like that.
What about the story about the St. Patrick’s Day treats? When did that happen?
I remember her bringing treats during her tutoring time.
So it wouldn’t have been St. Patrick’s Day?
Well, no, because her tutoring actually started until April.
Could it have been Easter bunny kind of thing?
I thought it was a May Day basket.
This exercise in trying to assess the degree of amnesia, after the fact, clearly demonstrates how important it is for these inquiries to be made contemporaneously. In mild traumatic brain injury cases, I am consistently demanding more in terms of amnesia inquiry, during the first 24 to 48 hours after the injury.
One could argue that the amnesia inquiry is less significant in a severe TBI where one can presume injury. Yet, with someone like Nancy – whose coma may have been largely drug induced – it is an important way of assessing severity. Yet trying to reconstruct that amnesia, years after the fact, with a survivor whose very concept of time and memory may have been disrupted by the injury, is terribly difficult. When the survivor is a child, it becomes even more challenging. It was frustrating to ask the questions and unsatisfying to read the transcript.
Frankly, the most significant conclusion that probably can be found in Nancy’s answers was not that she had profound amnesia, but that she had significant disruption in her sense of a timeline. As our mission in TBI Voices is to record the voice of brain injury, this is a unique voice worthy of hearing and contemplating.