Paul Harris, OD
For years I had searched for the just the right book that could explain to both the family and life partners of a patient with a head injury as well as the patient themselves many of the profoundly life changing effects that result from having sustained a traumatic brain injury. This book was what I was searching for. Simply put, it is the best book to date I have found that brings alive the inner world of a brain injury survivor in a way that allows those who read it to truly understand and not just sympathize with the person. It allows them to really know what to do to support their loved one in healing to the highest level they can.
Claudia was an emergency room physician who, while cycling one day, had her life profoundly changed by an encounter with a motor vehicle. The beginning of her post trauma period is consumed with the behaviors we so often see in this population; denial, depression, and frustration. How often do we have patients that come in after such an injury with unrealistic plans to return to exactly the same life they had beforehand? Their all consuming drive is to go back to who they were, to the life they lived before the injury, when in reality all around can see that will not happen. However, everyone around is afraid of what will happen if they ever give voice to these concerns. So there emerges an unspoken conspiracy to not put voice to the facts that serve to block the full return to a former life, in fear that these comments might be as traumatic as the actual injury was.
One symptom above all seemed to override nearly everything in her recovery and this was a profound short-term memory deficit. What many of us consider a simple errand, buying two or three things at the store turns into nightmare after nightmare for her. In those instances where she would get to the correct store, she might find the first thing she had set out to purchase, then end up not remembering the other two things she needed.
Claudia might actually remember to get all the things into her basket to realize at the checkout counter she had not brought her money, or not being able to find her car after getting all of those things done correctly and having to wait until the parking lot cleared out to find her car.
She has put into words a symptom that many of my head injury patients grope for the words to describe. When I share her words they relax and agree fully. The word is “flooding”. They describe that being under stress, such as being in a busy place with lots of movement that might be new to them, that their sensory system simply gets flooded and they can’t process data. Then progressively they shut down, becoming unable to process any of the data. Following extensive rehabilitation, that I will describe a bit later, we see Claudia enter a place where she will try to do some volunteer work. This volunteer work is also part of her on-going rehabilitation. Claudia ends up getting so totally flooded that the health care workers around her believe she is having either a transient ischemic attack, a stroke or some type of seizure. They whisk her to treatment all the while she was just overloaded to the point that she simply could not speak or move. Once I describe this to some of my head injured patients, they nod in ascent that they share these episodes as well.
To avoid these periods of flooding most learn, as Kurt Goldstein put it, to alter their milieu to avoid placing themselves in those situations where they know they may flood. Over time this has them going through a life that looks more and more normal on the surface, but in reality is becoming more and more restricted in overall experience and certainly in aspirations.
Although she is from Michigan, Claudia ended up enrolling in a treatment program at the Head Trauma Program of New York University’s Rusk Institute, which included physiatry and allied rehabilitative specialists. Many aspects of the care she got resembled some parts of what we do in vision therapy. However, the book clearly demonstrates the roles that other disciplines play in working on her acceptance of the new person who emerged after the head injury as well as helping to deal with her severe depression.
Those important in Claudia’s life serve as tremendous examples to those who read the book about what to do and not to do in supporting and helping an affected person. Her mother is very supportive from the beginning but demonstrates many of the expectations that it will be ok in time and life will return to the way it was before. Claudia also has an amazingly understanding life partner who seemed to know just the right times to back away and give Claudia the time and distance to discover who she was. Accepting these evolving expectations from their relationship allowed them to come through the event and long recovery still together. So often this is not the story. As soon as it becomes evident that the injured party will not return to whom they were before the injury, the physically undamaged person leaves the relationship. So this story is a powerful message to those life partners and family of head injured patients everywhere about life after such an injury.
Only over an extended period of time does Claudia realize that she can never return to the hustle bustle of the emergency room. However, she does still have intact all of her medical knowledge and worked hard to find a way to use it. She now is a teacher who, working from extensive notes, is revered as an excellent teacher in medical school. When asked a question that takes her off topic she has found ways to access the information needed and to return to the task she was doing at the time of the question. She still makes extensive use of “to-do” lists and reminder notes and calendars etc. and has found that by off-loading these event triggers that she can do more and more all the time.
I highly recommend this book to all health care professionals who work with patients with acquired or traumatic brain injury. After reading the book themselves then each should be in a position to discuss the key aspects of the book with patients and their support teams as well as recommending the book directly to these same people.
The following is an excerpt from “Over My Head” where Claudia Osborn tells the rest of us what we should NOT say to the head injury person. This is directly from her notebook dated June 16, 1990:
Please Don't Tell Me You Know What It's Like
I understand their motivation. People are being nice. They want to reassure me I am normal, that my problems are not different from theirs. It is a standard way to let me know they feel good about me.
Our conversation has few variations. They say about themselves; "My memory is worthless. I don't know where I'm going half the time. You think you're bad, I'm worse."
Or, "Thank God, they don't give me those cognitive tests. I'd never pass," "You're lucky you can blame everything on a head injury. You forget that most of us have a poor memory." "Just wait till you get to be 40 (60, 80) like me: You'll know what bad really is."
It is inane chatter. It occurs while I am running as fast as I can to stay in place, working to keep alert and energized, to follow their conversation, to consciously direct my mind using every strategy I possess just to do something which for them is automatic.
After 12 years of university education, I labor to read a short story, must ask my high-school-trained assistant for directions to my job, and use an alarm every three minutes to drive to the correct destination.
No, they do not know what it is like. People's abilities and inner resources vary widely in degree and kind. That is not the same as being stripped of the abilities one had and valued. Their occasional moments of absent-mindedness and quirks of intellect have not robbed them of intellectual exchanges, separated them from a beloved profession, or made them unrecognizable to themselves.
Without intention, they discount my struggle to compensate for my losses and minimize the small victories in my day. Surely, it would be outrageous to say to a person with artificial legs that walking is a challenge for us all. I try to take these insensitive comments in the well-intentioned spirit in which they are given, but how I wish others would try less hard to show me an empathy they do not possess.
How much better it is when people act naturally with me. Often, I benefit from their assistance. It feels good to laugh with them when my mistakes are funny and to sense their empathy when they're not.
So, laugh with me, cry with me, but please don't tell me you know how I feel or you know what it's like because "it's the same" for you.
How can it be? You have never lived in my head.