4 Years of TBI Recovery: Reflections

Birthdays, anniversaries, dates of loss, life and other special events often lead to emotional reflections. Today marks four years since my life-changing traumatic brain injury. I am grateful to be here to reflect on the past four years. In the past, I have described this injury as a tick mark on my timeline of life that states: October 13, 2018 – day of lost humanness. It felt like I left myself on the ice that day and became a ghost. 

There was a time in life where I felt like a giant. Nothing could stop me. Nothing could bring me down. My TBI seemed to smash me. I became miniature, so small no one could hear or see me anymore. No matter how much effort I put in, no matter how loud or persistently I attempted to explain myself and be heard, I was left with more frustration and felt further isolated because no matter the various ways attempted, I still could not be heard or seen. It’s like living in a completely different world than everyone else. I often thought, am I still amongst the living or did I die at the moment of impact?

I had to stop asking myself why this was happening to me and start asking how this was happening for me. What could I gain from this experience despite so much loss? I realized we can either become victims of our own lives or creators. Previously, on this date, it was a day filled with heaviness, despair and loss. While today could be heavy, focused on the pain and loss of the past four years and filled with mourning and grief, I am choosing to focus on what I have learned, what I have gained, and I am celebrating life. Every day I didn’t think I would get through, I did. Every moment I felt I couldn’t go on, I did. 

We may look at something but do we really see? This injury impaired my vision but opened my eyes to the fragility of life. In just one second, everything can change. I took my eyes for granted, my brain for granted, pain-free days, energy, sleep, the intricate communication systems in the body we so heavily rely on unconsciously without stopping to truly think about. I took a simple drive in the car listening to music for granted, concerts, shopping at the grocery store, spontaneity. I took just simply spending time with people without any negative after effects for granted. 

One of the most challenging aspects of this recovery is the invisibility of brain injury. There is such a mismatch between fighting for every single moment of every day and looking “fine” or “great.” I think of the quote, “Just because someone carries it well, doesn’t mean it isn’t heavy.” Unfortunately, many aspects of this recovery led me to feel invisible and it has been a fight to get to the point where I realized my injury may be invisible to most but I don’t have to be.

Every once in a while, someone might see a residual effect of it but this is not the norm. For the most part, it’s invisible and as time progressed after the injury, I felt more and more invisible. This only worsened as people and medical providers dismissed and diminished my experience. I had no energy left but spent it trying to convince people to understand and this did not serve me well. I realized I couldn’t change someone else’s mind and committed myself to no longer trying to change the minds of people committed to misunderstanding me and my recovery. After all, by continuing to be negatively affected by the inability of others to change, I was also refusing to change.

After connecting with many people on similar journeys, this seems to be a common experience. You don’t see the pain we have learned to hide so well. You don’t see how we pay for it during and after a social event we had to muster up all of our energy to get to. But when we get home, the main event is on the bathroom floor with the toilet or rolled up in bed in pain. And the cost of being present for one seemingly simple activity will require several weeks to gain energy and strength back.

I realized those people are in the stands and I am on the field of my life, living it. It’s my experience and there are many spectators. As with any sporting event, some judge you, some cheer you on, some boo you and call you names, some revel in watching you fail, and others feel like they win if you win. We can choose who is in our corner. We can choose what we hear. We can choose what we think. We cannot choose how someone else thinks nor what their perception is.

For years, I was constantly yearning the past and trying to put myself there – somewhere familiar and safe although it didn’t feel familiar anymore because I couldn’t remember what that state of being felt like. “Normal” was gone and I had forgotten what that meant. While I was yearning the past, there was no way I could move forward. I had to let go of who I thought I was and re-invent myself. I realized the familiarity was holding me back. Change is scary and uncomfortable and many don’t reach a point in their lives where they want to change until something becomes so bad and the current situation is more uncomfortable than the prospect of change. Some decide it’s time because it finally got bad enough. I was resistant to change for a long time but we are not stagnant beings. 

I realized it would be concerning if I weren’t changing and growing. Everything is changing, evolving and growing at any given moment. This includes ourselves. It would be a bigger tragedy if I remained untouched, unchanged, unevolved. Because every opportunity, good or bad, is an opportunity for growth. We can wallow in it or accept the opportunity and end up with wisdom that will last a lifetime and for generations to come. 

I had felt really far from others and so out of place, so disconnected, so unhuman, that it was like I was trying to leave me behind but I realized I am alone with my thoughts a lot of the time. To be comfortable with that, I must be comfortable with myself and my emotions. This meant I needed to learn to be kind to and love myself. My life was filled with external validation. Playing competitive sports my entire life, I became used to this – congratulated for my play and achievements with ceremonies, awards, trophies. This was all praise for what I did not who I am. This then bled into my career as a physician assistant – I spent most of my life giving to others which also gave me a sense of external validation. I was successful and accomplished because I performed well in hockey and performed well helping and saving lives. 

These two things were so intertwined in who I was and became my identity. I’ve truly come to realize in full how this was detrimental because very suddenly, I could no longer help others as the injury forced me out of my career as a PA and a hockey player. I had an identity crisis and felt so lost. Who am I without those things? Am I as a person strictly what I do? I realized I needed to create my own inner validation and become content within myself so that I no longer needed external validation from anyone or anything. This is not an easy feat but I can say I am closest to this now more than I have ever been in my life. I think it’s important to stop and think about what roles you play in your life, what defines your identity, and who would you be if you suddenly were not able to perform in those roles anymore?

I started to become disheartened and angry with the majority of medical providers seen during this recovery. These were the experts supposedly trained to get me better and help me but this only turned out to be the opposite. I realized they weren’t intentionally trying to hurt me or worsen my recovery; they were uninformed and unwilling to search further. 

I am grateful for the providers that allowed me to slip through the cracks, who left it all up to me to fend for myself. I am grateful for the providers who set up roadblocks, prohibiting me from getting better. To them I was just another number or statistic. I was faceless. I became invisible. They fueled a fire within me to find a better way. A passion was ignited. The care I received had worsened my condition – physically and mentally. Somehow through the rubble, I’ve come out stronger than I was before and I now know there is a better way.

Limits were placed on me but I am choosing to be limitless. I was told I would likely never practice medicine again. I am grateful for those providers who told me to accept there would be no more improvement because they helped fuel my passion and lit a fire in me to go out and bring good into this world. I will practice medicine again and when I do, I know just the type of provider I want to be and the type I don’t want to be. I also know the person I want to be to change a little piece of this world.

Maybe for the first time, I am truly coming alive. I think of one of my favorite quotes of all time by Howard Thurman: “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, and go do that, because what the world needs is people who have come alive.” 

Many are dealt unfortunate circumstances in life and in turn shut down and put many walls up. I made a commitment to myself long ago that I will not be hardened by this experience. Rather, I will be softer, kinder, sensitive. I will love deeply and fiercely, not only others but myself.

Through lots of practice and continuous efforts, I have learned I am not broken. I am adequate. My story matters. I deserve the same love I give away. My story is my magic. There is always something to be grateful for. I should always trust my gut. I know my body better than anyone. Honesty and integrity are two of the most admirable strengths to have. Life is beautiful even in the darkest of times. I am enough. I am not invisible. 

After going through years of pain and suffering, I realized I have been growing through years of pain and suffering and that is an important perspective to have with anything in life. Do you go through it or do you grow through it? Do you lose or do you learn? This traumatic injury turned into an opportunity for me to really look within and ask, “What do I want for myself?” It turned into a reset of my worldview – seeing things through a different lens.

I don’t know if I believe everything happens for a reason. I sat so many times and cried thinking there could be no good reason for this. I struggled with my faith over and over. I became pissed at God for a long time. But I trust this is where I am supposed to be and this is the pace I am supposed to go at. I still don’t know if I believe everything happens for a reason, but I’ve come out of this with a worldview that is painted with kindness, patience, empathy, compassion. 

I see people walking around, understanding I could never know what they are going through just by looking at them. After persistently trying new therapies over the past four years, this taught me I have the guts to fail because that means I have an unwavering passion to continue to get up and try again over and over. I have learned that maybe when it feels like things are falling apart, they are really falling together. I have learned to be kind even when life isn’t. I have learned to count myself in and stop counting myself out. With any challenge in life, we can either allow it to extinguish our flame or use it as fuel to ignite our passion. 

I am excited for what is to come. Albert Camus wrote, “The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion.” I am becoming free. Who wants to be a rebel with me?

Today, four years later, I am choosing to change the tick mark on my timeline to: October 13, 2018 – the first day of my greatest transformation to becoming so absolutely free that my existence is an act of rebellion.