Playing the Waiting Game After My Traumatic Brain Injury

Alex Skye
Female portrait combined with fractal paint and clock.

It was an ordinary day when part of me died and part of me lived. I know that sounds dramatic, but hear me out. I bought groceries like any other day and it resulted in the corner of the freezer door assaulting my right temple and my cheek being abused by the fridge door handle. It was a freak accident that dropped me to the floor surrounded in vomit, fractured teeth, a cheek contusion and a traumatic brain injury. The pressure in my brain increased over time and my vision went and the light was too bright. The noises from the paramedics didn’t make sense and the questions about the president made me feel frustrated. A friend was a phone call away and little did I know that she would be my hero.

There were two ER visits and two Urgent Care visits within one week. They said “here is an IV, an ice pack, some Advil and nausea medicine, we hope you feel better soon.” It was a “you look fine, go home” kind of ordeal. The damage was invisible to imaging scans, but my symptoms revealed the truth of what had happened to me. I found out three months later that my brain did the coup contrecoup. That is when the brain bounces within the skull, damaging both sides. It explained why I had right side weakness when hitting the right side of my head. The bounce also caused frequent and uncontrollable urination, numbness, tingling, persistent dehydration, vomiting, blurry vision, chronic fatigue, nightmares and blasting migraines. My neurologist told me I should have been hospitalized and that I should be better by now. It was scary and discouraging that my trajectory was not going as expected.

Related:How Yoga Helped Me Come to Terms With My Brain Injury

I’ve heard time and time again, “well, you look normal.” Just because my facial bruises are gone, it doesn’t mean I can drive, read, watch TV, eat properly or regulate my body temperature. Minutes of reading leads to vomiting and pure exhaustion. Even my mitochondria are depleted — the brain drain is real. My brain feels like a bucket with a hole in it; no matter how much water I put into it, by the end of the day it’s empty. I can’t get the bucket full enough to last sunrise to sunset, so I nap for two to five hours during the day consistently.

I’m sick and tired of being sick and tired. I heard another survivor say, “I’ve been rebuilding and refueling, refueling and retooling, self-teaching and self-soothing.” I read every day for one to two hours and then review what I have read before bed because by then I have forgotten.

Related:When My Brain Injury Means I Forget Important Things

Again, the real kicker is that I look “normal” despite a loss of 10 pounds basically overnight. I’m active by nature, and the waiting game to feeling better is affecting my sense of self. I feel like my identity is evaporating. I had to say goodbye to the one thing that defines me more than anything, being a student. I had to surrender and take a break because I learned you are not rewarded in the land of TBI for going beyond your limits. I am actually penalized. That was evident when I spent the first three days of classes with my head in the toilet. The bodily changes have challenged me into shifting my priorities and realizing I must be my own hero.

I thought it was a concussion and I am more comfortable labeling it that way. But three months later I am still struggling with the aftermath and my life has changed dramatically. To this day, I am still overwhelmed by the selection of shampoos on the Walgreens shelf, couldn’t remember if I liked oranges, felt overwhelmed by the food in my fridge and felt overwhelmed by the idea of picking up a paintbrush due to a new decrease in my ability to perform fine motor movements. I don’t remember what my friends look like until I see them and forget who people are when their name pops up on caller ID.

Related:Grieving the Person I Used to Be Before My Traumatic Brain Injury

Doctor after doctor call my cell and I have to ask what kind of doctor they are because there are too many. My concussion specialist is trying to pull me out of denial and help me realize that even though it wasn’t a car accident (common among TBI survivors) and even though I didn’t fracture my skull, have a brain bleed or end up in a coma, it is just as debilitating and life-shaking. A TBI is a TBI; we experience similar effects even if one is more severe than the other.

Who am I? Who am I now? I’ll never be who I was, but hey, we are a new self every day, right? It is time to develop a new set of skills and start to rebuild myself. I won’t be the 20:59 finisher in the 5k running event for a while. I won’t be able to recognize someone I spoke with the day before for a while. I won’t be able to manage the chaos of my fridge for a while. And that’s OK!

I need to remember that healing from a brain injury shouldn’t stop because my health insurance coverage stops. I won’t give up. When I pray to God, I don’t ask for anything, I just thank Him for today. I meditate now and my focus is “let go and let God.”

I have post-concussion syndrome (PCS) — a multitude of concussion symptoms that last for months and sometimes years after the incident. Damn freezer door. Most concussions have symptoms that last two to four weeks, but when you are 13 weeks in and still struggling, it meets the criteria for not only PCS but a traumatic brain injury. It is no longer acute, but chronic and severe. I stay strong for the people who have been strong for me. Maybe I’ll be an inspiration to someone one day.

Patience is the key. I have to buckle up because I’ve got a long slow road ahead of me and shortcuts don’t exist. Who I was before is not who I am now, but now I have a chance to start over and create a new version of me. As Buddha says, “There are only two mistakes one can make along the road to truth; not going all the way and not starting.” It’s time to put my toe to the line and run a different kind of race.

I have to learn how to manage my issues with executive function, chronic fatigue and intermittent lack of initiative and follow through. I also have to remember that the easy things in life are usually not worth doing, I can’t change the direction of the wind, but I can adjust my sails to always reach my destination — man do I love Jimmy Dean for those powerful words. I survived the impact for a reason bigger than and beyond me and now it is time to fight. I could be an ordinary thread in my blanket or I can be that royal touch of purple that gives the garment distinction. I can be both powerful and unique. If I am going to doubt something, I am going to doubt my limits. I’m going to hobble another inch every day until I can break 20:59. I believe God has me right where I am supposed to be.

My confession is that my current situation sucks and I am frustrated with what happened to me. I’m not removed enough to be grateful but I’m not close enough to be hateful. I’m going to take it day by day and walk the walk until I can run to win and win I will.

Read more stories like this on The Mighty:

What Living With a Brain Injury Means

4 Surprising Ways Traumatic Brain Injury Changed Me

13 Tips for Helping Your Child Cope With Your Brain Injury