Portrait: Matthew

Waking up to a new reality

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.

A little bit about the accident

What brought me to what I refer to as my second life was a tragic car accident after school one day. I had suffered a Traumatic Brain Injury.

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.

The team of first responders, most of whom were 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 Trauma ICU at Erie County Medical Center (ECMC). The brilliant attending neurosurgeon effectively mitigated the bleeding and swelling inside my brain, which was due to intracranial bleeding. The procedure helped prevent further brain damage 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.

In the first week, my parents were advised that they may have to decide to remove me from life support in the near future.

My support network

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. 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.” Using a 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. 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 could recover many daily tasks: dressing, 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.

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?

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.

Where I am now

After years of recovery, 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 moderating the rate, prosody, and intelligibility of my speech. I also have difficulties with certain motor coordination, especially in planning and replicating movement. These are particularly difficult when I 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.

Less than 4 years after walking out of hospital, I graduated from University with a degree in Economics.

I live independently in a home I own with my loving husband, Kyle. We are also new dads, via surrogacy, caring for our infant son. I am also able to work a full-time job, outside of our home, as an Regulatory Compliance Analyst. 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 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.

Final thoughts

Personally, the “two-year critical period” after brain injury was an anxious time for me. Many clinicians had told me that most of the recovery from a TBI occurs within the first year, and after that point my recovery would plateau. In my experience, I continued to see positive changes in myself well beyond the first two years of recovery. I still see continued improvements today almost 15 years after the brain injury that changed my life. 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 different ways than I would have without brain damage, if I found a way to reshape my brain to work around these deficiencies, I still regard those changes as recovering.

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