We knew that Jacob suffered a serious injury at age 3. We new that God had spared his life. We returned to the USA only for him to be hospitalized because his immune system was refusing to work. He SEEMED to be recovering so very well from his head trauma and broken arm. Never in a million years did we have a clue we would be revisiting this injury 13 years later. In the past few months we have begun a journey towards understanding and learning everything we can about TBI’s (Traumatic Brain Injuries). I thought I would share a little of what we are learning here with you. We still feel as if we know so little, understand so little, are walking on eggshells in trying to help Jacob – but as you will read – these TBI’s are cruel agressors and change people. They can’t help it. We are – and will – do everything we can to help Jacob make it in life – to be all God created him to be. He is AMAZING and I know that God has great plans for him. Jeremiah 29 (The Message) says: “I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for. 12″When you call on me, when you come and pray to me, I’ll listen. 13-14″When you come looking for me, you’ll find me. “Yes, when you get serious about finding me and want it more than anything else, I’ll make sure you won’t be disappointed.” God’s Decree. “I’ll turn things around for you. I’ll bring you back from all the countries into which I drove you” and bring you home to the place from which I sent you off into exile. You can count on it.” God has plans for Jacob. Great Plans. Plans to prosper him and to give him a future he can hope for. We are serious about calling on Him, on praying to Him and we are confident He is listening and will keep his promise to Jacob.
Traumatic Brain Injury, TBI, undermines a lifetime of learning and personal development. Often the effects of head injuries are not immediately apparent. Many months (or years) may go by before such changes become apparent. For many who sustain head injuries the effects last for a few days or weeks. For many others the problems last a lifetime.
No one can predict with any certainty how long TBI impairments will last. They might last for a few weeks or they might linger for many years. No matter how long they last, they are characterized by problems such as memory loss, impaired concentration, attention disorders, mood swings, mental sluggishness, impulsivity, heightened arousal, personality problems, fatigue, and diminished IQ, etc. They are symptomatic a neuropsychological disorder caused by brain injury due to head injury. It is known as Post Concussion Syndrome, PCS. Even mild TBI, also known as concussion, can cause sweeping changes in the way the brain receives, processes, stores and retrieves information. For example:
1. TBI can interfere with the ability to manage multiple, simultaneous stimuli. In other words, ordinary sights, sounds, smells, light etc in the environment, known as, “sensory stimulation” bombard and easily overwhelm the injured brain. The brain tries to process all of this through sorting and filtering mechanisms that have been disrupted by TBI. This susceptibility to “environmental noise” can diminish an already sluggish capacity for thinking, focus and attention. Persons without brain injuries are generally able to filter out distractions and concentrate on the one thing they are focussing on. People with brain injuries may have a substantially reduced capacity to filter stimuli, for them doing so requires extraordinary effort and vigilance.
2. The extra effort, vigilance, and concentration needed to compensate for such deficits result in an enormous fatiguing effect. Such an effort produces a continuous drain on energy levels and results in chronic fatigue. Intellectual functions such as short-term memory tend to deteriorate as fatigue increases. Such deficits give rise to a vicious cycle that leads to feelings of inadequacy, discouragement, irritability and depression.
3. Such changes can turn a person into a non person, effectively incapable of performing, routine daily activities. The challenge then becomes to put in place compensatory strategies to help your adjustment to a new set of strengths and weaknesses, and a framework for a redefinition of self and purpose. The question then becomes “What remains of me?” and “What remains for me?” The trick is to become more self-aware. The goal is to live in the moment, to be still in the midst of chaos.
4. The destructive effects of PCS are such that the person becomes a mere shadow of his or her former self. Barring physical changes, they look the same, but distinctive details, and personality traits have been altered or lost. In the blink of an eye, a lifetime of learning and personal growth are laid to waste.
Changes in memory and organizational skills after a brain injury make it difficult to function in complex environments. Frequent changes in schedules and activities create a disorienting effect.
Damage to the frontal lobes interferes with the ability to control impulses, causing outbursts and inappropriate actions. It also interferes with the ability to appreciate consequences of behaviors. Additionally, it interferes with the ability to empathize with others.
PCS interferes with how or whether a person goes about doing something (e.g., Will s/he do it and, if so how?) This aspect of PCS deals with executive functioning. Another aspect of PCS has to do with what s/he knows or how much (e.g., How much does s/he know? What can s/he do?
So long as the executive functions are intact, a person can sustain considerable cognitive loss and still continue to be independent, constructively self-serving, and productive. When executive functions are impaired. the individual may no longer be capable of satisfactory self-care, of performing remunerative or useful work on his own, or of maintaining normal social relationships regardless of how well preserved are his cognitive capacities — or how high his scores on tests of skills, knowledge, and abilities. Moreover, cognitive deficits usually involve specific functions or functional areas; impairment in executive functions tend to show up globally,, affecting all aspects of behavior.”
In essence the old self is dead, done in by the destructive effects of PCS. All that remains are the tattered fragments of the old self. The challenge then becomes to create a new self from the the remnants of the former self. Adjusting to the loss self is a difficult and painful process. It is one that might benefit from consultation with a professional with special training in grief and loss.
Typical case history. A family had been advised by their daughter’s neurosurgeon to expect a “full recovery” within 2 years. Three years later, the family was disappointed with her progress and felt that it might be due her personal failings. Despite her hard work and remarkable accomplishments, they seemed to have the impression that there must be some secret cure, or something that they could do to restore their daughter to her former self.
They were puzzled by her new behaviors that more closely resembled those of a toddler rather than the mature responsible college age young lady they had raised.
Their question to was: “will she continue to grow up and mature?” The short simple answer is yes, it is very likely that she will continue to grow up and mature, but she will never be the same. Her old life is over. She will have to create a new life for her self, and she will have to reinvent herself out of the ashes of her destruction.
It is likely that she will remain dependent on you for many years to come. She probably longs to be free of parental controls. Every healthy, young person longs for the day when they can be free of such constraints. Unfortunately, her TBI impairments have gotten in the way of her ability to fulfill that very basis instinct.
Their questions concerning her “maturity and ‘apparent’ irresponsibility” did not provide sufficient details for me to gain a clear understanding of what they meant. What appears to be immaturity and irresponsibility might be the effects of her TBI. This is not to say that she will not continue to progress, but it means that any progress will be much slower than you would expect from a fully intact, bright, capable young adult. Consider the following:
When you are diagnosed with PCS it means that you have been saddled with an unreliable memory, http://www.headinjury.com/surveymem.htm , chronic fatigue, and unpredictable mood swings. Some persons become emotionally volatile due to their injuries. Such problems might be due to frontal lobe injuries and become “rigid” in their thinking. (this means unable to be flexible in their ideas or behaviors) and unable to wait.
Individuals with frontal lobe injuries may be confused by metaphors. While others with injuries to different regions of the brain may rely on the use of symbols or analogies to make points more concrete for them. Some persons experience severe visual problems and can not tolerate certain clothing patterns, or fluorescent lighting that trigger seizure-like activity. TBI can cause you to become hypersensitive to light, sound, and stimulus of all types. It can interfere with your biological cycles, such a sleep, appetite, respiration, digestion, etc.
A diagnosis of TBI means that: problem solving, and decision making, become more difficult. It means that doing things and understanding things takes more time and effort than before TBI. It means that reaction time will be slower, you will become more excitable, and your sense of knowing will be different, alien even. It means that organizing and expressing your thoughts will be more difficult.
It means that understanding and interpreting subtle clues, body language, and facial expressions will be more difficult. It means that self regulation and self appreciation will be diminished. It means that judgment and discrimination will be impaired.
At the end of the day A diagnosis of TBI means that maintaining an appearance of reasonable normalcy requires extra effort and vigilance which creates a chronic fatiguing effect which means that you will need frequent rest breaks and more quiet time. To ignore this requirement means that you will be continually bouncing off walls, offending, and alienating everyone in the immediate vicinity.
Headaches and other physical symptoms could be signs of the need for more rest. They could also indicate the presence of a TBI related vision disorder.
Living with TBI means that a lifetime of learning and personal growth goes out the window. It means that you must learn everything all over again. You should know that your learning style might have changed too. It also means that you have to grow up all over again. The second time around isn’t any easier, but you can get through it in a lot less time
TBI means that you are no longer the person that you used to be. This means that the old self is lost, a victim of the destruction of TBI.
Surviving TBI means that, like the mythological Phoenix, you must reinvent your self from the ashes of your own destruction. It means that you must embrace and love this new self, warts and all. It means that you must continually reform and refine the new self as you progress through life’s many phases, and challenges.
Living well in spite of TBI requires that you become intimate with it as it affects you and your family. This along with all of the above school becomes more of a torture chamber for students with TBI than it is for those without such injuries. Changes in memory and organizational skills after a brain injury make it difficult to function in complex environments. Frequent changes in teachers, classes, schedules and activities create new challenges for the student. Special accommodations such as readers, tutors, note takers, extra time on test, and open book tests ease the transition. Think of a tape recorder as an assistive device – record lectures, some schools provide this service.
Such a multitude of impairments might cause a person to be perceived as “immature and irresponsible,” but it might be an unfair characterization. TBI impairs the ability to to respond to the demands of daily living, yet in spite of such an enormous burden living well with TBI required you to demonstrate leadership in ways that would tax those without TBI.
Understanding the effects of TBI in your life requires that you make honest appraisals of who you are and what you hope to achieve within the context of your situation. It also means that you must possess enormous patience and forgiveness.
Persons with a history of sexual abuse, child abuse, depression, as well as individuals with a history of unresolved emotional disorders, face special difficulties following head trauma.
The success of rehabilitation usually depends on three main factors: (1) The age of the patient. Younger patients typically make better recoveries than older patients. (2) The amount of brain tissue damage and where in the brain the damage occured. Some functions are less specific than others and the brain can compensate by making new connections. Other functions, like speech and language, seem to more “hard-wired,” and if the basic neural “circuitboard” is damaged, less recovery is expected. (3) Persistence. The three rules of successful rehabilitation are practice! practice! and practice! Even in the face of seemingly overwhelming odds, near-miraculous “recovery” is possible when patients, their families, and knowledgeable clinicians all work together diligently and persistently over time.
However, the down-side of such expectations is that it can put undue pressure on the patient to keep “getting better” when he/she is already doing everything neurologically possible. The key is to use a combination of clinical wisdom, common sense, and compassion to make all the gains he/she can, and then both accepting the limits that remain and – just as important – finding new ways to express his/her remaining talents.
As we have begun looking at all of this information, researching, asking questions – we find ourselves looking back at Jacob over the years and realize that many of these things have been present over the course of his life. His immune system not working was always our concern – and so I think we, and his many doctors, missed these signs and symptoms. I’m not in any way implying blame ANYWHERE. Jacob’s team of doctors saved his life – and allowed him to be with us today – we thank God for them always.
So – if you’ve stayed with me this far – and read this glimpse into what Jacob is dealing with – I hope I can count on you for your prayers. Our faith and hope is in the love and grace of Christ.
To read more – this page has a lot of information as well: http://www.internationalbrain.org/?q=node/112