As a Rehabilitation Counselor I have had many clients with traumatic brain injuries (TBI). As with many disabilities, each person having a traumatic brain injury has similar challenges and symptoms and yet no one person is exactly alike. Some people are naturally more resilient than others, some have better support networks, others handle pain better. But I was never so intensely interested in all aspects of the rehabilitation of brain injuries until my two sons had brain injuries and both almost died.
As a young single mother, I was attending graduate school when I got a phone call that my seventeen year old son was in the ER and that he was very disoriented. When I got to the hospital he was hardly able to talk to me and his head was badly swollen. His face was disfigured and I struggled to understand what had happened.
His friend who accompanied him to the hospital explained that he was riding his BMX bike in the dark and tried to do a "trick" when his bike went over a cement ledge near a stairwell and he fell on his face, breaking his nose, and crushing the bones in the left side of his face. His friend said that he got up and rode his bike to his house and became disoriented. He then rode several miles to the hospital after debating what to do with his friend. By the time I saw him he was in so much pain it was hard to comprehend how he could ride that far when he had so much damage to his skull.
My son's sinuses were punctured and an infection leaked into his brain. The infection was so serious that part of his frontal lobe had to be removed and the hole sealed. He lost most of his eyelid and we weren't sure we could save his eye. It was a long and painful recovery for the bones to heal. Then there were a number of surgeries to save his eye. But that being said, he still continues to build his life around his disability because a brain injury is something you must negotiate and plan around, not something that goes away, unfortunately.
Just a few years before the older son's injury, my thirteen year old also had a fall from a BMX biking "trick" gone bad at a skate park. In his case he had an epidural bleed, which in a nutshell is blood leaking inside the skull and causing a lot of pressure. He had an intense headache, was disoriented, was throwing up and his pupils were not the same size. By the time we got to the hospital I was told he needed surgery or he would die. It was a very surreal moment and it was hard to comprehend what the doctor was really saying.
As I look back on the experience now, I reacted in a way I had often criticized others for doing in the past. I paused to discuss the situation with my son and to ask him what he thought. He asked the doctor if he could go home and come back tomorrow! Of course, I knew we weren't going to do that but at the same time I was basically in shock myself and not handling the information in a totally rational way. Whenever I see that sort of scenario on TV it makes me want to punch the person for stupidity and here I was doing that same thing.
Fortunately, my son is alive but I was wasting valuable time deciding what to do, requesting a second opinion when there is no time for any such thing to occur. That day I learned the lesson that when someone you love has a brain injury it not only changes their lives immediately but their family and support networks as well. My reaction and response was also required to be immediate and decisive.
If this happens to you, don't beat yourself up, just understand that the rehabilitation process will become a dance of sorts that you will have to do while you help your loved one heal. The fact that an injury happened to them changes you too. As they learn and recover you will change and acquire new skills to adapt as well.
SYMPTOMS AND REHABILITATION OPTIONS
As a Counselor and a parent with first hand experience, I want to help other people understand a few things that are typical of people with traumatic brain injuries.This is not an exhaustive list, but the most common issues people find occurring during recovery.
A ) Sleep disturbances, either sleeping too much or not enough.
We all know that if we become sleep deprived we don't function well and our lives become like a house of cards that begin a cascade into other problems with our health and relationships with others. It is so very important to get on top of this as soon as possible. I have found with my sons that listening to hypnotic CD's as they prepare to fall asleep, and sometimes during the day, has helped a lot. Using stereo headphones is recommended and a quiet room with temperature control helps to alleviate stress and tension. It is recommended that you have them listen to samples before you buy the CD as some sounds can be really irritating for a person with TBI, such as wind chimes and gongs.
The right hypnotic sounds help to get their body out of the "fight or fight" state that they spend so much of their time in. People with brain injuries are generally more sensitive to their environment, so help them to have some "down time" to experience rest, not just physical rest, but for their nervous system as well. Hypnosis helps to achieve this.
B ) Problems with mood and depression. Most of the time the person who had the injury is aware of not just what he or she can no longer do, but is actually mourning the "loss of themselves". They know things have changed in a substantial way and fears emerge about whether they will ever be able to function well, hold a job, have or sustain a family, or simply lead a "normal" life.
For years as a Vocational Evaluator I worked with people who were at the end of their rope and pretty sure that they could "do nothing". However, no matter how long a person has been out of work or the severity of the injury, more often than not, there is a job waiting for those who persevere! It may be a job that will require some accommodations but when you understand what your strengths and limitations are, you can make the right adjustments and find a good fit.
Whenever, I had a client so inclined to banish himself to the dark corners of his room and try to escape into medicated sleep, I would take him across the hall to meet my coworker who as a young man dove off a cliff and broke his neck. He was now a person with quadriplegia and who was working at his computer using a sip and puff straw. Seeing this kind man who could not move any part of his body working away and being cheerful with others, would often result in a major shift in mood and attitude fairly quickly.
People have strengths and limitations that will help to define new parameters for their lives, even after the injury. This is an opportunity to learn and grow and as you do you mold yourself into a person you never knew you could be. I have seen it happen time and time again and I want you to know that there is light at the end of the tunnel.
C ) An increase in emotional issues, particularly anger. My son recalls becoming so upset if someone stood too close to him in line at the store and recounts how he wanted to punch the person out because he could not handle it.
Sudden shifts in emotion are common, remember people with TBI are more sensitive to environmental issues. Overcrowding and noise is contraindicated. To the extend the environment can be modified to allow for space, noise levels, smells and light the better the situation will be. Most employers are happy to modify work areas to accommodate for these environmental issues.
D ) Intense frustration is very common and being impatient to the point that even small tasks become hard. I have seen my sons so frustrated that the thought of throwing an object out the window, or at you if you happen to get in the way, is not uncommon.
I always remember a phrase that goes like this. "By the inch it is a cinch, by the yard it is hard". Improvements are often going to come in small increments. As long as you are moving forward that is all you need to do. Don't compare yourself with others and don't perseverate on eating the elephant whole. Just remember that all you have to do is put one foot in front of the other, keep moving and pretty soon you will find yourself at the destination you need to be.
Allow yourself the breaks you need in doing tasks. Walk away and cool down and then return to the task. Schedule tasks with ample time to complete them and do not set yourself up for failure by taking on more than you need to do. You aren't trying to be superman or superwoman, you just need to concentrate on one thing at a time.
E ) Pain issues that don't resolve with medication.
Pain can be an ongoing problem that stands in the way of important objectives in your life. There are several types of pain.
1) Sometimes the TBI symptoms you are dealing with make you such an unhappy person that you drive away your support network. Your relationships with others suffer and if your support person(s) don't take adequate care they can become overwhelmed too. That does not help either of you. As the recovering person becomes more self-empowered they can engage in more activities that help them toward the goal of inclusion and integration with others in the community. The faster that can occur the better for the person with the injury and the support person as well. Remember, this recovery process is like a dance and sometimes you need to let others take the lead and sometimes, you as the person with the injury, will be need to take the lead in the recovery process.
Fear and anger can alienate you from others. We all want to be independent but when we allow our emotions to lead us astray we push the very people away who sincerely care about us and who want to help us recover. Don't set yourself up for a self-fulfilling prophecy that you deserve to be alone in your misery. That is a story that is great for novels but isn't particularly helpful for making life work for you. Sometimes negotiating this part of the recovery journey can be more painful than the actual physical pain.
2) Physical pain is unpleasant but it also zaps our energy. You may find that having a person who can go with you to your doctors visits to help take notes and keep track of what is being done, assessed or evaluated is incredibly valuable. I learned that my sons did not want to appear "weak" in front of the doctors and so they didn't tell them everything because they did not want to be perceived as less "manly". Since pain affects memory issues, this strategy and support during medical visits is important.
F ) Memory issues, particularly short-term memory is often impaired.
This is another reason why you should have your support person go with you to appointments. If it is not possible, have a recorded message on a recorder that fits in your purse or pocket to help you keep track on what to remember to ask your doctor. Another strategy is to keep a list of things you want to discuss with the doctor on paper and have him discuss your health concerns, test results or recommendations on a tape recorder so that you can listen to it and share it with others at a later time. Keep your notes in a file or at least in a box that is designated for medical records and important notifications. Request your health records because this way you have another way to know and remember important details about your health. If you move or are referred to another health care practitioner you will have the information at your finger tips.
Other helpful things to assist with memory issues are alarms for appointments. Cell phones often have these so you don't need to spend extra money if you need an alarm and carry a cell phone. Sitting in the front row where distractions are minimized and which helps you focus on what is going on in the room. Sometimes memory is a problem not only or exclusively because of an organic deficit but because you were so distracted you didn't get the information to begin with.
RESOURCES AND RECOMMENDATIONS
I recommend that people with traumatic brain injuries apply for services with their state Vocational Rehabilitation Agency. These agencies exist in every state and they are funded by federal and state funds. The purpose of these agencies is to assist you with recovery and rehabilitation. They can help retrain you and fund either a retraining program or schooling. They can provide supports such as job developers who help find the right job for you and will help with accommodation needs.
The Vocational Rehabilitation Agency is not a income based eligibility program. That means that you will not be denied services because of your income. They work closely with Social Security Benefits Advisers who can help you get and keep a job without risking your Social Security benefits, if you have them. They will review your case and advise you based on your particular situation. If you have no idea what you can do, they can provide the means to help you determine what type of work you can do and how you can accomplish it.
There are many websites that are helpful for people with disabilities. Here are a few for people with disabilities:
The Brain Injury Association is a wonderful resource and in every state. They have lots of information about TBI and rehabilitation options and resources waiting to assist you.
The Job Accommodation Network (JAN) is helpful with ideas on how to assist with necessary accommodations to obtain and retain a job.
For advocacy needs, contact the Disability Law Center who render legal and advocacy services for people with disabilities.
Don't be shy about contacting these resources because if they need to refer you to another place for more assistance they will.
Remember, you may be different today than you were yesterday but tomorrow you will be even better than you were today. A brain injury is a speed bump in the grand scheme of life, not the end of it.