March Is Brain Injury Awareness Month, But What Does That Mean?

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Once you sustain a brain injury, or know someone who is injured, how can you NOT be aware?

I am a big fan of comedian John Hodgman and his book, The Areas of My Expertise. In the subsequent audio book, he had callouts — spoken in his warm tenor voice — of satirical factoids like, “Were you aware of it?” I keep thinking about brain injury awareness month in that same regard.

Were you aware of it?

Yes, I am aware of traumatic brain injury (TBI). I am also aware of acquired brain injury (ABI). I have family members and friends with both. But I didn’t start that way. I had to learn over the years what certain symptoms looked like and how severe each meant in terms of possible damage. I learned when we need to visit the emergency room. And I learned when to give what I call “brain breaks” or down time for anything particularly emotionally or cognitively challenging. For example, taxes always take my husband and me twice the time I think should be spent on such a task. We know from experience that we have to prepare for down time and interruptions.

Pro tip: Brain breaks are helpful for everyone, not just those with brain injury. If you ever feel overwhelmed, take a break from using your brain! If you are able, take a walk or play with your pet, drink some water, breathe deeply. Brain breaks don’t need to be lengthy, a mere 5-10 minutes will do, just enough time to not think.

My stepson and father both have hydrocephalus, colloquially called water on the brain, an excess of cerebrospinal fluid (CSF) in the ventricles in the brain. While not considered a brain injury, hydrocephalus is often caused by head injury or trauma. Both have shunts which drain the excess CSF away from the brain. My stepson got his before I ever met him. My father didn’t get his shunt until he was 76 years old. Once he was home, post-op, we started monitoring him and I was able to recognize that he was not well. He was dizzy, falling, and slurring his words. He was also having trouble understanding simple questions. He needed his shunt adjusted ASAP. They had overcompensated for his height and it was draining too much fluid. Now that it is set properly, he is doing much better. My stepson had similar issues when he was a teenager when his hormones and growth spurts affected his hardware. I knew the signs. Would I have been so adamant that something was wrong with Dad if I hadn’t already experienced it with my stepson? I like to think so but I don’t know.

If you are anything like me, when you or your loved one are first given a diagnosis, you research. There is so much information available online, it can be overwhelming or frustrating to know which is accurate, but I find research helpful in being able to report or advocate to doctors for both myself and my loved ones. With research and guidance from doctors, we started to realize that certain symptoms can be attributed directly to previous brain injuries. Treating the brain injury first made a huge difference! Treatments could be as simple as basic self-care like drinking water and eating a healthy diet, or more intense treatments like cognitive behavioral therapy (CBT), memory strategies, physical therapy, yoga, meditation, and more. What was mind boggling was how much better our bodies felt when we started caring for our brain.

Were you aware of it? (“It” being brain injury and all that can come with it …)

I was not aware until I had experienced it firsthand. I did not realize the toll brain injury can have on you and your family until living through it. I am here to tell you, if you’ve seen one brain injury, you’ve seen one brain injury. Every brain is different. Every injury is different. The more I read comments and stories from BrainLine visitors, the more I learn, and the angrier I get. Angry that invisible injuries are so often dismissed or ignored in health care treatments and society. Angry at the disparities in treatment and care based on race, gender, and/or age. Angry at the push to get those who are injured back to work rather than allow for the appropriate time to heal. The latest studies say recovery from concussion can take up to a year. A full year to recover from a “bump on the head” as so many often improperly categorize — and minimize — a concussion. Hmmm, a year can be nothing when it comes to some brain injuries.

We, as a society, are not taking care of our brains or each other. We are so focused on the productivity that those who are unable to contribute financially are left in the lurch. What can we do? We can educate ourselves and our community. We can vote for legislators who support brain injury research initiatives and policy. We can stay informed on the latest treatments and not be afraid to advocate for ourselves or loved ones when we think something new might help. We can try new self-care regimens to see what works. It might take more than a couple of tries to get yoga down, but it could be beneficial, so why not give it a shot?

How do you mark Brain Injury Awareness Month?

Comments (1)

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Hello, it has been a long time since my accident. 8 years now. I am lucky to be alive and able to still receive Occupational and Physical therapies twice a week now. I am hard on myself, before my accident I had a long time hope to be able to run an office after I graduated from two bachelors degrees. Now, I have been fighting for what I have and it is getting taxing on my mind and body. I don't want to be living on Medicare forever. Maybe I'm just overthinking it. It is hard. I'll copy my story below. I happened on this site and maybe to blow some steam off. 27 now, 19 when I had my accident.

" On March 12, 2015 I was in a head-on collision while in California on Spring Break. I was having the time of my life with my two men who Co-founded ”The Sun Devil Riders club” with me, until I had a quick conversation with death. I had to be resuscitated twice during the ambulance ride and subsequent emergency surgery in the ER to address a ruptured kidney, two collapsed lungs, broken back, damaged intestines, blunt force trauma closed head injury, also other internal injuries from being skewered by a road sign. While I was having a battle of will against death, the ambulance team that saved my life rushed me to the nearest hospital, Mission Viejo Hospital. Good thing is that the best neurosurgeon was on call that day. The really amazing thing is that I was lying on the asphalt until the ambulance got there for 25 minutes. In E.R they placed lung tubes, removed my kidney and drilled a hole in my skull to relieve pressure on my brain. I was then placed into ICU with a Traumatic Brain Injury that left me in a coma and had another surgery the next day to complete the removal of one kidney, it was demolished by a road sign.
I don’t really know what happened after my accident but, my family has helped to fill in the missing parts of my memory. After I beat death by the skin of my teeth, I was in ICU for weeks. My parents flew into California to grieve and do whatever they could for me and my team. The first thing that the ER team did was to cauterize the wounds and control the bleeding. Then I needed a nephrectomy. My kidney was demolished from the trauma that an extended tree root that I landed on took revenge on me. Next list on the agenda was to saw into my cranium to release the pressure on my brain to prevent additional brain damage that would have ended my life.
During the surgeries I received multiple units of blood to keep me alive; 9 units of to be precise. I was then placed into ICU with a Traumatic Brain Injury that left me in a coma. My brain continued to swell and I had multiple mini-strokes so I had to undergo another surgery to remove part of my skull to prevent the swelling from ending my life. They induced hypothermia as a way to keep my body from failing. My liver started to shut down and I turn mustard yellow. They kept me in a coma for a month and a half to aid in healing also kept me with the broken back. Blood was required during this surgery as well as later during another surgery to repair a broken vertebra in my back, replace my skull bone. After having the trachea tube removed, and the esophageal tube removed I was air evacuated to Arizona and taken to Barrows Specialty Select Hospital. I was still semi-comatose and unresponsive. They then decided to move me to Care Meridian skilled nursing facility to further heal and see if I would regain consciousness.
After a month and a half of being at care meridian, going through physical, speech and occupational therapy. I still couldn’t speak, sit up, feed my-self and remained in diapers. Care Meridian is a skilled nursing facility. My family spent their time with me every day. I had somebody with me at all times. Once I got to the point I could stand 3 hours in rehab, at that time they moved me to Barrows inpatient facility. I was staying at the hospital, I was gaining a lot of progress with Christine in speech, Allison as my occupational therapist and Nate the physical therapist. Months passed by until I was able to go home. Sweet relief, my own room! Ohhh, it has been changed to make sure I will be safe, my brother moved into my room. Having someone with me every moment and having a railing on my bed to make sure I cannot fall out of bed in the night.
My mother came across Rehab without Walls. It is a facility that has therapists for each discipline (Physical, Speech, Occupational, Neuropsychology, and Vocational). I really enjoyed my time at Rehab without Walls they picked me up from my home every day and I brought my own lunch. Months passed by and I was having headaches, also my language was getting worse and worse. I felt some liquid oozing from my forehead, I don’t know how or why but I had a small pocket of infection underneath my cranium that interrupted my speech and my cognition. IF it was not caught, it probably would’ve sent me to my demise.
I then got an infection under my bone flap and had to have another surgery to remove the flap again and clean the infection out. The surgery went wrong; I had a brain bleed and mini strokes during the surgery. I went into a brain surgery with 100% vocal movement and then after that brain surgery, I could not say anything. I could hear and understand but could not reply, me and my mother both sobbed. The surgery damaged the language center of my brain and demolished my speech. I woke up without the ability to speak AGAIN and this time the doctors said it wouldn’t come back (showed them!). I then had seizures because of the brain bleed. I had lost all the progress that was made over the last year and once again started over to learn to walk, talk, feed myself and do basic tasks of daily living all over again. Went back to Barrows inpatient rehab again to start all over!! Three more months of inpatient care there and intense therapies and this time with seizures added on. I stayed there for about 2 months. I remember when I was in my hospital room; I wheeled myself to my therapists offices to make I would have WHOLE hour! Then after I was released from hospital I then started for the second time Rehab Without Walls.
I want to spell this out, THANK YOU to every Doctor/Surgeon/Nurse/Therapist that has worked on my body or mind or emotional problems without you I would be either dead or not the Kevin that I am today. So, THANK YOU. Now I have thanked everyone that has helped me I will talk about when my language was destroyed.
Now I really remember that period of time through present day. I was going into Rehab Without Walls 5 days a week. They were happy and distraught about seeing me again. I loved my time at Rehab Without Walls. In the second time I was going to RWW I got some progress but, my insurance stopped paying for me to go there. Again, my parents are my heroes battled against the insurance companies to get me back into RWW and this was my final session with Rehab Without Walls. Every time I talk about RWW I want to talk about Karen Will. I love Karen Will (A Speech Therapist) who has guided me into the love of language and how important your speech is in your time on this rock.
I remember RWW fondly but, I will skip over the 1.5 years that I was in RWW and I will resume talking about what I’m doing in my life after I graduated from RWW on April 12, 2017. On the last day at RWW I told myself to document what I have done. No rest for the wicked, I started at Advanced Neurologic Rehabilitation for PT and speech. ANR told me that they would start cutting the appointments by 15 minutes to save time for documentation. I thought about that, after 2 weeks I would miss a whole session so, I found another rehab center for physical therapy and occupational therapy.
Neuro & Brain Performance Center is the most PATIENT FOCUSED facility I have been to. Coming from a patient that has been through the medical circus more times that I care to count. They do have love for their patients. The wonderful attribute that they have in their clinic is run and operated as a loving home. Their patients aren’t just numbers on a spreadsheet. John Davis and Duane Blau have a special slot in my heart.

I typed out a quick summary of my accident on Ortega Highway: Head on collision and then hit rock cliff, 20 minutes on the asphalt waiting for ambulance, fractured vertebrae, side punctured by rock outcropping and tree root, ruptured one kidney, partially collapsed both lungs, bruised liver and stomach, skull micro fractures & TBI, resuscitated 2x on the ride to the hospital, resuscitated once on the ER operating table, repaired internal damage and controlled bleeding. Drilled skull to relieve pressure from swelling, intubated and installed lung drain tubes, moved to ICU on March 13, continued operation to remove one kidney and repair other internal injuries. Next days in a coma, swelling of the brain continued, causing mini strokes/brain bleeds, swelling continued, continued to experience mini strokes/brain bleeds, part of skull removed to prevent death due to brain swelling, coma continued for approximately 4 weeks. Mid-April back surgery to stabilize vertebrae fracture, reinstalled skull bone removed previously, late April flown to Phoenix, arrived St Joe critical care unit, stayed for 11-12 weeks, transferred to Care Meridian, in Barrow Neurological rehab on 4th of July 2015 for approximately 6-8 weeks, transferred to home mid to late august and then began rehab at RWW, infection under reinstalled skull bone was drained at St Joe/Barrow in September, became worse, operation to remove infected material done at St Joe/Barrow in October, caused severe brain bleed in speech processing center, returned home and then attended RWW again for most of 2016 and continued till April 2017, began PT and Speech at ANR in April. Began OT at Brain and Neuro Performance Center in approximately August/September 2017. I started Physical Therapy there after ANR started cutting my appointments to 45 minutes.
I know it is kind of a long story but, now you know a little more about my life; Traumatic Brain Injury included and how you can triumph over the horrific things that guides me to a happier life. I still have the ambition to go back into school, work, find where I am needed and wanted. I am happy you are still reading my story, this story is not concluded but I am still breathing. This story has helped me to recall all of the horrific events and to realize that the gift of life has to be your first priority.
Love life. Never give up on yourself.

So much else has happened, sometimes I get down on myself about what I missed out on. Though I realize what I have gained thru this life. SO much information has passed thru my life the last 7 years. It is surely not what I thought my life would be like. It still can be a good life. Thank you for reading this. Here's to the future. "