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A Different Point of View

by Marnee Loftin, Associate School Psychologist, TSBVI

The year of 1996 has proven to be a year of mixed blessings for me. On the negative side, I experienced a health crisis that was life threatening as well as life changing. On the positive side, I had an opportunity to "walk a half-mile in the moccasins" of many of my students. That experience will remain in my heart, and I hope always influence my efforts to provide quality services for children with special needs.

I have worked in the field of special education for approximately 20 years and provided many inservices for staff and parents. One topic of interest to me recently has been children who have visual impairments brought about by neurological trauma and the impact that visual condition has on their emotions and behavior. I have frequently described the problems they experience: inaccurately interpreting visual stimuli, increased tactile defensiveness, and the emotional drains that occur because of uncertainty and confusion. My knowledge has now been supplemented with experience.

In January, I experienced an intracranial hemorrhage in the right parietal lobe as a result of a sudden infection of the brain. The cause of the infection is still not certain, but I became significantly impaired on the left side of my body. Doctors were encouraging about my recovery but stressed the importance of being patient and following their instructions.

My most significant memory of my hospital stay was the discomfort of many of the tests that were done. I regretted many times the empty assurance that I had given in the past to students that certain medical tests were not painful. Most of these tests were painful and all of them were quite frightening to me. The staff who took the time to explain these procedures thoroughly and accurately to me will always be a positive memory. Step one of my "moccasin journey" was a resolve to do a better job of explaining these tests to the students I work with in the future.

The hospital experience was quite enlightening to me, but the real challenge has been the process of rehabilitation. It seems long even though it has been a fairly rapid recovery compared to many of my students. Through this process I have "learned" many of the things I "knew" about traumatic brain injury.

Interpreting visual stimuli

People with head injuries can have great difficulty interpreting what they see. Often this is much more difficult in large and open environments. These individuals will often actively resist being in these environments and if forced into these situations they will react in a number of inappropriate ways.

My first experience with this phenomenon came with the initial walk down the hall of the hospital. Acuity was not a problem. In the small hospital room I had not experienced much difficulty other than reaching for items that seemed to have an annoying habit of moving themselves just out of my reach as I extended my hand. When I stepped out into the larger world of the hallway, it was another story entirely.

I was assisted into the hallway by a physical therapist. Instantly I knew that I would do anything to get out of that situation. I have never had a panic attack before, but I experienced a major one at that moment. The different textures and colors on the walls and floors presented a moving and frightening pattern. Thinking about it later, I was reminded of a Disney movie where the trees in the forest slowly assumed frightening humanlike forms. It was more than my system could handle, even for just three minutes. I will never forget the sheer terror that accompanied that event.

For several months, interpretation of visual stimuli presented significant problems, particularly when there were large amounts of visual stimuli. My first impulse was to avoid these areas and the emotional reactions they provoked. Luckily my family pushed me to tackle these situations regularly, but they knew enough to let me take it slowly. Ultimately I became able to tolerate a trip to the mall or to Walmart.

I was also lucky in that I experienced a great deal of spontaneous recovery as a result of the healing process. Although I still experience problems when presented with truly unique visual stimuli, I have finally developed some coping strategies. Most recently the movie "Twister" reminded me that what is entertainment for others may prove torturous to me.

Tactile defensiveness

Occupational and physical therapists talk about the importance of understanding tactile defensiveness in children with neurological damage. Contact with their skin may be a most unpleasant experience for them. This can hold true for clothing as well as human touch. It is not uncommon to see this child become upset by hugs or certain articles of clothing. We often suggest choosing loose fitting clothes for these children and avoiding "surprise" touches from others.

This problem resolved itself pretty quickly in my case, thank goodness, because it was truly a life changing experience. I have always been a person who was eager to touch and hug. Suddenly any type of physical contact with another person became painful. I had always imagined that this type of pain occurred briefly. Someone touched you; it felt uncomfortable; they stopped touching you; and the pain stopped. What I experienced was quite different.

The pain lasted long after touch occurred. It was intense and felt as if separate pins soaked in a poisonous solution had been inserted in a million areas of my skin. Light touches were certainly the worst, but for the first two weeks even back rubs were torture. I promised myself that in the future I would be very observant of my students and their reaction to touch, especially those students who cannot verbalize their distress. How frightening to go through a day dreading the possibility of human touch.

Emotional issues

People with a head injury often experience a number of significant emotional issues. Initially both the individual and his family will go through a typical grieving process. This is difficult for everyone. There is also frustration as the individual goes through relearning skills. Once a certain level of rehabilitation has occurred and the problems are not as apparent, society places a number of demands on the person without recognizing the frustration and exhaustion he/she may be continuing to feel. In most extreme cases, significant personality changes or psychiatric issues may emerge. Understanding these issues and having a strong base of support from family and friends is the most important factor in recovery.

I have counseled a number of students and their families over the years and I was aware of these issues. For me, relearning self-help skills was probably the most difficult emotionally. Often I knew the steps that were involved, but getting my body to cooperate with me was tricky! It was these situations that were most likely to bring on tears and curses or avoidance on my part.

The other emotionally difficult aspect of this experience was dealing with the "whys" of my experience. I have gone through all the stages of frustration with the medical establishment. I have replayed the events immediately prior to the hemorrhage. I felt anxiety about what might happen in the future. Ultimately I have managed to do what I counselled in the past. Try to accept what has happened and go on with your life as it is now. Little did I know that my life philosophy would become a patchwork of my grandmother's homilies . . . you play the hand that is dealt you without crying over spilled milk.

I continue to deal with some emotional issues such as the "late-night-what-ifs". I still have physical limitations although they are not always apparent to others. In my eagerness to put this all behind me, I have difficulty acknowledging my limitations.

My goal for this year is to become more open about discussing these needs and asking for help or modifications when they are necessary. I have been reminded that this is what much of my work with students who are visually impaired was and is about. Now I have to "put my money where my mouth is."

I know that ultimately I will be a better psychologist as a result of these experiences. I will certainly be more empathetic with the students and their families. I am also certain as a result of this experience that family and friends can be an incredible source of support during difficult times, and I am so thankful to all of you who were there for me.

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