I’ve been mulling this piece in my mind for a bit. I usually reserve my TBI posts for the February 2nd anniversary of Bill’s car accident. However, March is brain injury awareness month so I am breaking my pattern in order to shed some light for those of you who might not walk in the brain injury world on a daily basis.
Brain injury is more common than most people realize. According to the CDC, there are 2.87 million traumatic brain injuries (TBI) a year in the United States. Of those nearly 3 million, 56,800 die from their injuries and another 288,000 will be hospitalized. The number of people who are not seen in an ER or receive no care is not known.
These numbers are for those who have traumatic brain injuries, which is when the brain is altered through an outside source such as car accidents, sports injuries, falls, concussions, military injuries, domestic violence/child abuse injuries, or gunshot injuries. These statistics do not reflect acquired brain injury (ABI) numbers, where the source of the injury is internal such as stroke, diseases such as dementia or Alzheimer’s, metabolic disorders, or tumors.
It is evident there are more people dealing with brain related injuries, where their brain function has been altered, than is recognized by the general public. The numbers are such that it is likely everyone knows someone who is dealing with a brain injury whether you realize it or not. The quirky neighbor, the rambling family member, the guy at school who seems scattered, the woman at work who is always late…you may not know it but they might have an invisible disability. The crazy thing about brain injury is that it is possible THEY do not know it either.
Brain injuries can be major, like a piece of lumber crashing through the windshield at 60 miles an hour and smashing your head like Bill’s was, or it can be a fall at home where you bumped your head, got right up and thought nothing more about it. The signs and symptoms are as varied as the individual. Some have very little symptoms which resolve themselves and others have significant ways in which the brain doesn’t function the same after the injury and alters life forever.
Some of the symptoms of brain injury are cognitive such as memory loss, slow processing, poor concentration, organizational issues, poor judgement and difficulty initiating activities. Some symptoms are physical such as seizures, muscle spasticity, fatigue, headaches, and balance problems. The emotional behavioral symptoms are depression, mood swings, anxiety, impulsivity and agitation. When you have a mixture of all of these symptoms your life will never be the same.
The numbers paint a picture of the enormity of the problem, but anyone can tell you the statistics. I am not writing to give you the numbers alone because while big numbers show the trends, they do not give you the struggle of the day to day life of living with an injured brain. No, I don’t want to tell you about TBI, I want to show you.
It begins with the struggle to get out of bed each morning. The fog that clouds your brain does not clear when it hears the alarm. Nor does it clear once you are out of bed and on your feet. The confusion as to what you are supposed to be doing is real. The literal stumbling, requires sitting for a long while to get your equilibrium. The medicine prescribed by your doctor helps somewhat, but it takes a while to get on board. It is best to take the medicine and go back to bed to wait for it to kick in, or to sit on the couch while you wait. Once the fog begins to lift there are decisions to be made, each of which takes monumental effort even with meds.
Getting dressed is the first hurtle to cross. Where are you going today? What will you be doing? What will you need to wear? What is the weather going to be like? Will you need long sleeves or short? Casual or more dressy? Should you layer or take a coat? What kind of shoes should you wear? Do any of these things match? What color would be best? All these questions that people with “normal” brains answer in seconds without even really thinking about them are giant issues for a person with TBI. It can take hours to process them because each one is muttled in the muck and mire of the damaged gray matter. The pressure of getting dressed is exhausting and also creates enormous anxiety because when you have to be somewhere by a certain time it hangs over your morning like an anvil waiting to fall and crush your whole day.
Once dressed, the decision making continues, what to eat for breakfast, is cereal best, where is the cereal anyway? More anxiety, because what if you pick incorrectly? What do you need to take with you today? Where are you going? What are you doing? You need your medicine. You need your phone with the alarms to remind you to take your medicine. Did you take your medicine yet? Where is your medicine? Your thoughts are interrupted by looking for your medicine, which leads you into different rooms where there are different things to distract you. In the end, you get out of the house, but you have less than half of the items you need. You come back 2 times to search for your glasses or your phone. Each time frustrates you more and more when you cannot find the items you are looking for. They have disappeared and you are late. Then you get angry. At yourself. At your brain. At everything.
When you arrive late to your destination, you have your meds, glasses, phone, and coat, but you realize the equipment you need to do the actual job is at home. You apologize and reschedule the job for another day, knowing that you will not be asked to do the job again in the future. It doesn’t matter that you are personable, friendly and funny. Your disability is invisible, so you are judged on what people deem to be character flaws or unprofessional behavior. Once you are home again, you are exhausted and the fog is back with a vengeance. It is like your brain cannot function at all. Sleep is the only solution that will recharge your brain, so you go to bed for a nap.
Even though it was over by 1:00, this was a relatively good day except for the left equipment. You were able to get up, dressed and out the door on your own. You were able to find the correct destination. You were able to remember what you were supposed to be doing and where you were going. Bad days are the ones where everything gets cancelled because the fog never clears. Excellent days are the ones where you remember and execute everything properly. Life is like a roller coaster for you and it is exhausting. Utterly exhausting. You feel like a loser most of the time because you cannot seem to get your stuff together. This contributes to the depression which is like a blanket that rarely lifts. Yet, you try. Every day you try again. You never give up. You are overwhelmed by it all, the decisions, the noise, the inability to sort things out, but you keep on going.
The numbers say that there are millions like this one…the one I love…the one I live with. Millions of others, like him, who silently struggle to function on a daily basis. Millions with this invisible disability. Millions who are misunderstood and judged. Millions who are told they are fine or should be fine or look just fine. They are not fine. They are hurting, confused, and struggling to function.
For brain injury awareness month, I ask you, my readers, to look around you and to have compassion for those who are the walking wounded. Acknowledgement of their struggle validates them. They don’t want sympathy as much has just some indicator that you know that life is hard for them and that you accept them as they are. Give them grace. It makes all the difference.