Ten years after brain injury: A reflection
Many clinicians told Matt that most of the recovery from a TBI occurs within the first one year, and after that point his recovery would plateau such that his faculties would no longer improve. However, Matt has continued to see positive changes well beyond the first two years of recovery and today, over ten years on, still strives for continued improvements.
When I woke up alone on a cold hospital floor–the result of my intention to escape what I had thought was a nightmare–the first thing I realized was that my legs did not work like they used to. Screaming nurses swarmed to my attention, so I knew that something was wrong. The last thing I remembered was enjoying a fully functional and lazy Sunday, the final day of mid-winter break from my Senior year of high school. Apparently, months had gone by–the calendar on the wall already had the first few days of May crossed off.
The nightmare was real. There were things that I could not remember happening and there was no changing that, no matter how difficult that was for me to grasp. That moment, on the floor, is when I tell people I woke up from the coma, although my doctor would say differently. Two weeks prior, after following the simple command of “squeeze my finger,” I was declared “awake.”
That moment, on the floor, I had to accept that everyone around me was telling the truth when they said that I was in an accident. I had suffered a Traumatic Brain Injury (TBI).
Although I have no recollection of anything happening on that final day of my “first” life, I have spoken with many others over the years to rebuild a memory of how I got to my “second” life. What brought me to that moment, on the floor, was a tragic car accident after school one day.
My friend had mistaken the turn signal of an oncoming pick-up truck and then proceeded to turn left. Her little sedan was t-boned by the truck directly where I was sitting in the backseat. My body was thrown from side to side, causing my head to collide with both the window and the head of a fellow passenger. The collision resulted in a coup-contrecoup style TBI and left me in a deep coma. My three friends walked away with minor injuries.
In addition to being entirely unconscious (Glasgow Coma Scale of 3-4), I was not breathing, in decerebrate posturing, and in cardiac arrest. The team of first responders, most of whom volunteer firefighters, were responsible for performing CPR, intubating me, and administering epinephrine at the scene to jump-start my heart. Once I was stabilized, they alerted Mercy Flight of WNY to rapidly transport me to the TICU at Erie County Medical Center (ECMC). The brilliant attending neurosurgeon, Dr. Gregory Bennett MD, effectively mitigated the bleeding and swelling inside my brain, which was due to intracranial bleeding and an intraparenchymal contusion. The procedure helped prevent further brain damage from brain herniation and increased my chances of having a “good” outcome, or being able to live without constant care. The chances of that happening were about 1 in 10, according to prognostic models. But first I had to survive–a mere 20% likelihood. In the first week, my parents were advised that they may have to make a decision to remove me from life support in the near future.
However grim the prognosis, I survived the acute stages and a serious lung infection. I spent exactly three weeks in the TICU before I was stable enough to be transferred and admitted to the “Coma Stim” rehabilitation program under the outstanding care of my physiatrist, Dr. Gary Wang MD, PhD.
It would be another three weeks until I was officially declared awake.
MY RECOVERY PROCESS
Luckily, I had a network of resources around me to support my recovery. It would not be possible without the help of others. I had the knowledge of the medical community–including doctors, therapists, and nurses–and the love and support of my family and friends. But still, most importantly, I had to choose to recover first.
The recovery process began well before I was fully conscious of what was happening. Things started out very slowly so as to ease me out of the acute stage of care when I was unable to move, eat, or breathe on my own. At the beginning, my memories of this were very vague and dream-like so I relied on the help of others to reconstruct them. During this time, a Speech Language Pathologist (SLP) worked with me to see if I could identify who my family members were in photographs, discern tastes and smells, perform basic reading and language tasks, and solve elementary mathematical functions to assess my status following my severe TBI. I am sure that I felt a little annoyed by the ease of these questions. I was also unable to speak at the time, and this was probably for the best–agitation is common during the “waking” process, so my irritated thoughts could not be translated into harsh, pointed commentary.
I strongly remember being unable to speak after “waking up.” I remember the frustration when inquiries and requests would form in my head but I was unable to control the seemingly natural motor function of speech. For short responses, I utilized one finger for “yes” and two fingers for “no.” This was great for simple questions without the use of multiple options (e.g. people would sometimes ask me if I wanted “this or that”–like, seriously?). For more complex language, I was fortunate enough to be able to manually spell out words on a laminated sheet containing the alphabet, known as a letter board. This made communication a longer, more difficult process but it was one which allowed me much greater flexibility in expressing myself.
Using this letter board in lieu of oral speech was a great way to show that I had retained all of my memories and cognitive skills, no matter how much more difficult it was to slowly spell out words and hope the person receiving the request could understand. I was able to communicate my questions and what I recalled in complete statements. In one memory of using this letter board, I had spelled out the word “intrinsic” and my Mom asked what that word meant. I still wonder in what context I chose to use that word and whether it was merely to “show off.”
I also had friends visit who were in AP Calculus with me at the time and they would pose simple derivative calculations for me to solve (“What is the first derivative of 3x?” they would ask, and I would hold up three fingers to answer).
Before I could even regain the ability to stand up and move independently, the Physical Therapists needed to help me recover normal muscle function. Being in a coma for two months takes a significant toll on your body–you experience abnormal posturing during the critical stages and muscle atrophy from being unconscious and bedridden. In order to ever be able to function normally again, they first had to utilize serial casting to hold my muscles in the correct position for several days to “force” them back to normal tone. This was an extremely painful process and often required multiple therapists alongside the doctor to allow the cast to set in the correct position. In fact, at the time of “waking up” and trying to “escape,” I had casts on both legs and one arm.
In Occupational Therapy, the focus was on relearning how to work with my hands and execute self-care functions. These “natural” tasks were daily functions that I never previously thought about doing and things that I did not have difficulty with just a few months prior.
Through various adaptations and workarounds to help me rethink these skills, I was able to recover many daily tasks: dressing myself, brushing my teeth, using silverware, writing with a pen, using a computer keyboard, and stacking or sorting objects. The list is endless.
These times were very difficult for me. The physical and emotional pains I felt during recovery were deep and unfamiliar. My friends who would visit were all still living the last days of high school, going to prom, and getting ready to attend college in the fall. I had already been accepted to Canisius College and I was supposed to live on campus and begin the honors program but that would have to be put on hold. At the time, I could not really grasp the challenges I might have to face in the future; in hindsight, I am grateful that I had so many friends and family members visiting me every day, supporting me along the way. Many people do not have such support and that is something that I did not really put into perspective while I was in the hospital. Some patients rarely had visitors. If they were unable to advocate for proper care for themselves, who would?
I had to choose to pursue a full recovery. I had to disregard the poor prognosis given to me that I would likely never be able to return to school or function as an independent adult again.
Luckily, I was never an athlete so I was not that bothered by the dystonia, apraxia, or the prospect of not being able to play sports ever again. (Honestly, I was actually relieved that I now had an excuse). My focus remained on being able to return to school, get a college degree, and establish a career. But before I could do any of that, I had to relearn how to walk again–so that I could walk across the stage at my high school graduation.
The first step was standing up for a prolonged time, which was often very painful. After I could do this proficiently again, I was granted the use of a modified walker with two therapists assisting me. The walker was designed to support my left arm and shoulder, which still required some therapy to regain normal function. After I was allowed to take the walker back to my hospital room, I walked as often as I could to rebuild my strength. Having the support of my friends there to walk around the hospital with me each day was another point of good fortune because, after a few weeks, I did not need the walker at all. I was ready to go home.
After 103 days in the hospital, roughly two months of which I had no self-care independence, I walked out of the hospital without the assistance of any medical device. My doctor pushed me in a wheelchair to the front door and–to honor my special request–let me walk out of the building, on my own two feet.
Two weeks after that, I walked across the stage at my high school graduation to a boisterous standing ovation.
From there, I continued outpatient therapies, as were covered by my health insurance, for about three more months. After this, I was to the point at which clinicians considered my function satisfactory (although I was far from where I am today). I also started school at Erie Community College (ECC), part-time, in the fall following my injury to continue my recovery and ensure there were no academic problems.
I returned to my part-time job at Old Navy about eight months after my injury. This was a good experience for me to get back into doing something (and to have my first paid fifteen-minute break in a long time). I started back as a cashier, performing the same work I had been doing for two years prior. It did not feel the same though. It was still very difficult for me to speak clearly and handle the other duties of being a cashier–fold and place the customer’s purchase into a bag, as well as handle any cash transactions. I remember I had one customer ask me bluntly “What’s wrong with you?” because I was having difficulty bagging her purchase. Matter-of-factly, I told her exactly what was “wrong” with me.
ANXIETY ABOUT COGNITIVE DEFICITS
Before I began at Canisius College, as planned, to pursue a Bachelor’s degree, I had to be evaluated for any cognitive deficits that would make more difficult to obtain a degree in my chosen field of study – Finance. This was of great concern to me as I had always planned to graduate from college and work in Business. To assess if I would require any academic accommodation, I consulted a neuropsychologist to evaluate my language, memory, and executive functioning skills through a battery of testing. The testing showed that I had deficits in the areas of motor skills (duh?) and visual interpretation. Fortunately, nothing that would really prevent me from pursuing studying Finance – and I was shown a way to better interpret and remember visualizations. In order to remember anything visual (i.e. pictures, graphs, what people look like, etc.), I must think about an image in words. This is something that I do today without even thinking about it.
Better yet, I finished all of my coursework at the Community College with high grades, so the fears of being unable to adapt and losing my academic skills were gone.
The next step before returning to school was ensuring that I could drive a car again. I got my license approximately three years earlier at age sixteen but my parents wanted me to complete a Driver Evaluation at the hospital. This was to evaluate my vision and reaction time to see if I could still safely operate a vehicle. I passed the test and started driving again, in a brand new car, before finishing the spring semester at ECC.
At the end of the Summer of 2010, I was ready to move into the dorms at Canisius College and start school full-time. It took a long time for me to get there but in the grand scheme of things I was fortunate to only be delayed by one year.
I graduated with a Bachelor’s degree cum laude in economics and finance in 2013, less than four years after walking out of the hospital.
Today, after years of recovery, I will stress that one of the primary reasons I recovered so well was because of the support of my family, friends, and community. My life today is far better than I could have ever imagined–with or without suffering from a TBI. I still have some difficulty with speaking, particularly in the area of moderating the rate, prosody, and intelligibility of my speech. I also have difficulties with certain motor coordination, especially in the area of planning and replicating movement. These are particularly difficult when I have to speak and move at the same time, say, walking and talking.
Despite these small deficits, I choose to get out of bed each day with a smile on my face and a great appreciation for the opportunities I have taken to rebuild my life after being on life support and unable to move.
Outside of my full-time job and my personal life, I aim to use my experience in therapy to better the current paradigm of neuro-recovery and rehabilitation by speaking to groups of students and clinicians. I do this not to be glorified, but for the purpose of using my experience to show that good outcomes are more likely than past prognostic models would indicate given the vast improvements in medicine, rehabilitation science, and hospital staffing. I want to support a change in the current focus so that medical care is focused on the individual rather than on expected outcomes. In striving for this pursuit, I speak ambitiously to student therapists to push them to approach things from a different perspective–one where they see their patient’s individual goals and build a recovery plan based on what those goals are.
Personally, the “two year critical period” after brain injury was a major anxiety for me. Many clinicians had told me that most of the recovery from a TBI occurs within the first one year, and after that point my recovery would plateau such that my faculties would no longer improve. In my experience, I continued to see positive changes in myself well beyond the first two years of recovery and I still strive for continued improvements. I am always on the lookout for ways to improve my physical function and train my brain to accomplish different tasks with greater efficiency. Even though I may be accomplishing tasks in a different way than I would have without brain damage, if I found a way to reshape my brain in order to work around these deficiencies, I still regard those changes as recovering. I personally do not see any evidence that your brain ever stops changing after a brain injury and I believe with the right focus and activity, a healthy brain can continue to be reshaped, allowing for it to grow in its capabilities.