“Don’t look and it won’t hurt” are the words often spoken before a shot is administered. Sometimes in an attempt to emotionally retreat, I whisper this to myself. This is survival mode. I’m momentarily ignoring the ache TBI has caused.
Brain injury offers an endless arsenal. There is always something new resulting from the fall that occurred six years ago. The injury is often one step ahead.
Years ago, on a particularly cruel TBI day, I stopped my car at a crossroads in the middle of the country. We had been given unbearable news. My heart felt devastated. Exiting the car, I slammed the door, screaming at the sky, “Is that all you’ve got? Because I’ve got more!” At that moment, TBI had become a person with a face all its own. This dark, cruel face was no longer a stranger. It had become part of our family.
In writing this blog, I am aware it will be read in December. For many, this season represents gift giving. I’m offering myself an early gift in sharing this—the gift of admitting how furious I feel about what happened to Taylor and the continued struggles we face.
Taylor is active and working part-time. He is involved in the community and has a small circle of friends. For these things, I am grateful.
However, there is a flip side to our lives and Taylor’s injury that is not freely discussed. There are issues we deal with that must be kept more private. I am not referencing some sinister actions or behavior. I am referring to the harsher side of brain injury, which I am certain many readers relate to. It’s the part of the injury where the Taylor we felt deeply connected to disappears and is replaced by someone entirely unfamiliar to us. It is safe to say that this happens daily. I no longer wonder, “Who is this?” Instead, I become an observer, outside of my body, seeing myself bent over, weeping…missing so much in one single, solitary moment.
Over the past few years, we have witnessed Taylor’s friends as they married and had children. This year was no different. I’ve come to a place of sincere happiness for others, but I have been unable to resolve the ache in myself for what may never be: the daughter-in-law I dreamed of having—the blossoming of Taylor as a father. And most importantly, the realities I previously took for granted—Taylor’s happiness and independence.
Life inside the bubble of brain injury is a roller coaster. In our bubble, the daytime is generally good. Nighttime brings the opposite. Nighttime is when the grip of TBI tightens in our home, announcing, “I am here, and I am strong!” In these hours, I focus on the knowledge that this will pass. And if I can, I slip to a safe place in my mind.
Each evening, Taylor's post-injury thought process evolves into a profound sense of sadness, frustration, and defeat. This transpires to a negative outlook on life and others. It extends itself to various groups, family members, and friends. It is hell to witness. It is as if the deepest moments of rejection, anger, and despair compile in Taylor’s brain and then come roaring out like an angry lion. Interestingly enough, nights have been a challenge since his early recovery.
Taylor recently wrote, "I don't know what to do with my life! Doesn't matter how much I do or how hard I try, it doesn't get me anywhere! So maybe I should just stop!”
In these hours, he cannot see how far he has come. He wants to quit. That exhaustion is something I can relate to.
Moving through life with Taylor, I've noticed many things. He hears many cheers and sometimes jeers. "You are awesome. People look up to you." Then, “Stop doing that. Think it through! You can't have that." Even when coming from a place of love, correction doesn’t feel loving.
As Taylor's mom, I am both his cheerleader and reality-checker. Taylor needs both of these offerings. When I notice the scale tipping hard one way or the other, I try to imagine myself in his shoes and bring some sort of balance.
I can't read Taylor's mind, but I can see his angst...feeling like he is never enough...being reminded of the cant's...and then when expressing these feelings, being reminded to be grateful. I also experience his delight at genuine acceptance and real friendship. This is exhausting to witness. How must it feel to live it? I know the injury has changed Taylor. I also know how hard he tries to become whoever it is the world wants him to be.
A recent theme playing in his mind is the conflict of understanding that his old life will look different than his new life. He remembers who he was, and he misses being that man.
I want people to understand when someone falls down 13 stairs, bashing his beautiful head on almost every one of them… cracking, crushing, damaging...and then doesn't even flutter his eyes for a few weeks, remains in a comatose state for much longer than anticipated, wakes up confused, angry, and weak...it changes him. And even though he might look bright, burly, and strong, fighting back with tremendous force.... there might be a spot that is (for now or for always) impossible to reach. I hate sharing these thoughts, but they are our truth. Parts of Taylor are gone, and to act as if they aren't is cruel.
I will never be okay with what happened that night. I will forever hate brain injury and every single thing it stole from not just Taylor, but our family.
Last night, I closed my eyes and lulled myself to sleep singing the words I used to sing to Taylor in rehab. “I know you are stronger than this. I know you are braver than this. I know your future is brighter than this. Come home, Taylor, come home.”
Six years later, I still miss my son. I know he also misses himself.