Luke's TBI Symptoms
Physical Symptoms
Fatigue - Luke often put himself to bed during the day if over-stimulated or over-heated.
Sleep - When first injured, his anxiety level interfered with sleep. He had consistent difficulty arising from sleep.
Body Temperature - Luke experienced febrile seizures several times, which rendered him unresponsive and unconscious. He also had low tolerance for cold temperatures and shivered easily, even in relatively warm environments. Luke often wore heavy sweatshirts in warm weather, yet still occasionally shivered.
Seizures - For three years immediately after being injured, he sporadically clenched his fists and shook his arms. These episodes lasted only seconds, after which he seemed fine again. These episodes were eventually diagnosed as mini-seizures, but not until after the TBI was finally diagnosed sixteen years later.
Sleep - When first injured, his anxiety level interfered with sleep. He had consistent difficulty arising from sleep.
Body Temperature - Luke experienced febrile seizures several times, which rendered him unresponsive and unconscious. He also had low tolerance for cold temperatures and shivered easily, even in relatively warm environments. Luke often wore heavy sweatshirts in warm weather, yet still occasionally shivered.
Seizures - For three years immediately after being injured, he sporadically clenched his fists and shook his arms. These episodes lasted only seconds, after which he seemed fine again. These episodes were eventually diagnosed as mini-seizures, but not until after the TBI was finally diagnosed sixteen years later.
Intellectual Symptoms
Information Processing - Luke had a very high intelligence quotient (I.Q.), but had great difficulty taking information into his brain and understanding the message. His responses to auditory messages were often off-base. The message he heard might have been about "apples" but his response would be about "oranges." It caused confusion to him and to those around him.
Memory - His short-term memory was affected, though not severely.
Perseveration - Luke often got "stuck" in a thought, and diversions or other methods to help him move through that thought were unsuccessful. Sometimes, the same thought stayed with him for years.
Reading - Just prior to being diagnosed with TBI at the age of almost nineteen, Luke was able to describe his difficulties with reading. He said he knew each word individually (and, in fact, he had a very large vocabulary), but was unable to "fit the words together" as they appeared on a page. In other words, he struggled with reading comprehension, and eventually he just quit reading because he thought he was inept. Diagnosis of the TBI helped him to understand why he had difficulty with reading comprehension.
Synesthesia - One aspect of synesthesia is an overlay of color on black lettering. In Luke's case, each letter and number had a unique and separate color association. For example, Luke asked me when he was about eight years old: "Mom, what color are your 9's? Mine are blue, my 4's are green." His synesthesia color alphabet was the one most commonly experienced by synesthetes. I have never experienced synesthesia, nor has any other family member to my knowledge. It would seem to me, however, that a constant overlay of different colors for each letter of a word would make reading comprehension even more difficult.
Memory - His short-term memory was affected, though not severely.
Perseveration - Luke often got "stuck" in a thought, and diversions or other methods to help him move through that thought were unsuccessful. Sometimes, the same thought stayed with him for years.
Reading - Just prior to being diagnosed with TBI at the age of almost nineteen, Luke was able to describe his difficulties with reading. He said he knew each word individually (and, in fact, he had a very large vocabulary), but was unable to "fit the words together" as they appeared on a page. In other words, he struggled with reading comprehension, and eventually he just quit reading because he thought he was inept. Diagnosis of the TBI helped him to understand why he had difficulty with reading comprehension.
Synesthesia - One aspect of synesthesia is an overlay of color on black lettering. In Luke's case, each letter and number had a unique and separate color association. For example, Luke asked me when he was about eight years old: "Mom, what color are your 9's? Mine are blue, my 4's are green." His synesthesia color alphabet was the one most commonly experienced by synesthetes. I have never experienced synesthesia, nor has any other family member to my knowledge. It would seem to me, however, that a constant overlay of different colors for each letter of a word would make reading comprehension even more difficult.
Social Symptoms
Agitation - Luke struggled with a high level of agitation, beginning right after the injury and lasting his lifetime. Before the injury, he had been remarkably laid-back, easy to raise and fun to be around. This was an extreme change of personality, and should have been a "flag" leading to diagnosis of TBI. The agitation that followed the injury was visible until he reached puberty. His activity level was almost phrenetic. Teachers sometimes called him "Mr. Enthusiasm." Socially, this agitation level caused difficulties for him, since he seemed constantly in motion, yet very unfocused.
Information Processing - This intellection symptom also impacted Luke's social life, since he was often misunderstood, and he often misunderstood others. Classmates often called him names because he was not a good athlete or focused during game-playing. By eighth grade, Luke was one of two children not included in whole-class graduation parties. The other child was a special education student, and both he and Luke were very kind and nice to those around them. But, they were "different" and not accepted by their peers.
Depression - When Luke reached puberty, his enthusiasm turned inward, yet his thoughts remained on "overdrive." He withdrew from social activities. Because the TBI had not yet been diagnosed, he didn't understand why others shunned him, and he blamed himself. The depression worsened as the TBI remained undiagnosed and Luke thought he was to blame for all his difficulties, yet he didn't understand how or why.
Friendships - Finally, in high school, Luke made lasting friendships with peers who seemed to either understand him, or accept him for his "differences." When I later asked one of his good friends if there had been anything in Luke's behavior that would have indicated a brain injury, he quickly replied that "Luke never seemed to get that when he made a bad choice, trouble would follow."
Information Processing - This intellection symptom also impacted Luke's social life, since he was often misunderstood, and he often misunderstood others. Classmates often called him names because he was not a good athlete or focused during game-playing. By eighth grade, Luke was one of two children not included in whole-class graduation parties. The other child was a special education student, and both he and Luke were very kind and nice to those around them. But, they were "different" and not accepted by their peers.
Depression - When Luke reached puberty, his enthusiasm turned inward, yet his thoughts remained on "overdrive." He withdrew from social activities. Because the TBI had not yet been diagnosed, he didn't understand why others shunned him, and he blamed himself. The depression worsened as the TBI remained undiagnosed and Luke thought he was to blame for all his difficulties, yet he didn't understand how or why.
Friendships - Finally, in high school, Luke made lasting friendships with peers who seemed to either understand him, or accept him for his "differences." When I later asked one of his good friends if there had been anything in Luke's behavior that would have indicated a brain injury, he quickly replied that "Luke never seemed to get that when he made a bad choice, trouble would follow."
Emotional Symptoms
Disinhibition - "Acting first and thinking later" is one way to describe disinhibition. Luke did a lot of that, particularly after puberty. It was difficult to separate his actions from normal teenage defiance at times, but his actions were often "over the top" and out of proportion to the norm and he never seemed to make the connection that his actions had natural consequences. As Luke grew increasingly frustrated with his inability to succeed academically and socially, his disinhibition also increased. As his failures mounted in spite of his attempts to succeed, he took his frustration out by calling his father and me names, but minutes later would be respectful again. By the end of high school, however, his hopes of becoming a physicist had been dashed, and his recovery to respectful behavior all but disappeared. Professional counseling was ineffective, as were consistent parental guidelines and applied consequences.
"Noises in my head" - When Luke was approaching puberty, he startled me one day by announcing that he heard "noises" in his head. He described them as "five televisions talking at once and I can't turn them off." The pediatrician called this "imagination" and did not take what Luke experienced seriously. This symptom might have been the most difficult for Luke to endure, however, and he often took walks to quiet places, to "try to turn the noises off."
Flat Affect - Throughout Luke's school years, his teachers invariably remarked that he had a "flat affect" - that Lukes face and demeanor did not show emotion. He did not easily smile or laugh and his face often was "expressionless." He also had difficulty "reading" another person's facial expressions, so I was never able, for example, to just look at Luke in a way that he detected my meaning.
"Noises in my head" - When Luke was approaching puberty, he startled me one day by announcing that he heard "noises" in his head. He described them as "five televisions talking at once and I can't turn them off." The pediatrician called this "imagination" and did not take what Luke experienced seriously. This symptom might have been the most difficult for Luke to endure, however, and he often took walks to quiet places, to "try to turn the noises off."
Flat Affect - Throughout Luke's school years, his teachers invariably remarked that he had a "flat affect" - that Lukes face and demeanor did not show emotion. He did not easily smile or laugh and his face often was "expressionless." He also had difficulty "reading" another person's facial expressions, so I was never able, for example, to just look at Luke in a way that he detected my meaning.