An Open Letter to My Loved Ones on Post-Concussion Syndrome

I incurred a concussion almost 8 years ago in a terrible car accident. I was off work for close to two years and had two failed attempts to return to work. I lost contact with a lot of family, friends and well, with myself. In truth, a big part of me died that day and most every day over the next two years as I worked on my recovery.

A friend recently asked me what top things I wish others knew about the experience and notably about Post-Concussion Syndrome. I thought, what wonderful way to give a voice to those still on this recovery journey that are still not able to articulate clearly what they are going through and to give hope for healing. The accident does not define me, my response to it does!

The top 5 things I wish you knew!

1. It’s not just in my head. I cannot just ‘shake it off’. I am not okay.

Brain injuries are real. A concussion is a type of traumatic brain injury or TBI. Post-concussion symptoms can range in severity from mild headaches that resolve quickly to debilitating headaches along with balance issues, vision struggles, delayed thought processing, comprehension struggles, confusion and memory challenges.

Just because I look okay, don’t let that fool you! I have high functioning days where I will astound you! I also have low functioning days where I cannot remember the word for ‘cat’. Healing is not linear. I cannot predict how I will be day to day. Nor can you.

A lot of people – even doctors – downplay concussions and the duration of recovery. Recovery can take years. The statement “it’s just a concussion” should never be uttered. Period.

2. I’m not lazy. It takes monumental effort to function daily.

When you see me out and about and enjoying life you are seeing the smallest snapshot of my life. You are not seeing the days of rest needed before an outing, nor the debilitating fatigue and headaches I often suffer afterward.

Setbacks or symptoms can hit at any time – even years out. No matter how good I may seem on a Monday – perhaps hiking a 10km trail or working a 10-hour day – I may be falling apart by Wednesday, incapable of getting out of bed. Even now, almost 8 years out, debilitating symptoms can hit when least expect it.

I recently learned that about fifty percent of our brain function is tied to vision. Many concussion recoverees suffer vision impairments. My eyes could not track normally which meant they had to work about five times harder to process the same information most people do simply without trying. Going out in public, dealing with a lot of sensory stimulus, trying to focus on a task or conversation can be exhausting. The extra effort that a concussion recoveree has to put forward just to manage in everyday life is astounding!

3. I am not dumb. Your words, snide comments and sneers hurt. A lot.

I see when people snicker at my word choice or my slow response. Those comments can extinguish the great strides I’ve made in my recovery in an instant. The days I couldn’t follow a conversation or string together a sentence, I was too embarrassed to go out in public. It took more courage than you can imagine to go to a café to order a coffee, to practice having conversations with people I didn’t know so I could face those people that I do.

There are times I cannot recall how to insert a key in a lock or find words to express myself. There are times my thought processing is delayed. Eight days, eight months and yes, even eight years out. It upsets me more than you know.

I know you think it’s harmless and chuckle when I cannot recall the word for cat or when I overuse the word ‘lovely’ to describe a nice person, place or thing unable to recall any other synonyms. Those snickers bring back waves of anxiety and self-consciousness. It used to make me want to crawl into bed and hide. Sometimes it still does. More often now it makes me angry. At you.

I do not need your reminders that I struggle. If I walk away from you, now you know why.

4. I live with varying degrees of Fear, Anxiety, Depression and PTSD

Close to half of TBI recoverees suffer depression in the first year. That rises to about two thirds by year seven. When symptoms of headache, nausea and balance don’t keep me in bed, lack of self-confidence and loss of my sense of self sometimes do. This isolation and loneliness contributes to anxiety and depression. Add on the enormous guilt of having to rely on others often and not being able to be there for our loved ones.

I am not just dealing with the terror of my past. I am also dealing with the fear of my future. Recently while driving home from a nearby town, I looked around and didn’t recognize where I was. I couldn’t remember where I was in a trip I had taken a thousand times! I sometimes forget things that happened yesterday. I thought I was past all this. Here I am years out and it still happens. Having a father who suffered from parkinsonism-induced dementia and a grandmother who suffered dementia, this scares the ever-loving shit outta me. I don’t know whether it is temporary or a sign of things to come. And so, I make choice. Every single day. To shut down the fearful thoughts, to actively exercise my brain, maybe with puzzles, exercise, conversation or writing. It is a conscientious choice and activity. Somedays I don’t want to do it.

5. I miss who I was more than you know. And the me with you.

A big part of me died late 2014. The person that I was, all that I used to do, all the dreams I had at that time. I miss the me that was athletic, the me that volunteered, the me that worked part time teaching along with a day job, the me that was the good mother, friend, and daughter. I miss being spontaneous in life, no fear to try new things. I miss how quickly I would bounce back from the challenges of daily life. I miss how resilient I really was.

Don’t get me wrong. I’m grateful for the family and friends that rallied around me. I’m grateful for my home, my life I’m carving out now. And I’m grateful for life lessons on finding balance, calm and peace. But, I still miss the old me. A lot.

What I want you to know

I appreciate you. The you who stood by me.

I’m sorry I couldn’t do more, be more, for you.

I’m sorry for any harsh words I may have said while I dealt with my anger, frustration fear and depression.

I am not stupid. I am not lazy. I am not weak. Quite the contrary. I have faced demons you cannot see. I keep getting up each day. It makes me stronger and more courageous than you will ever know. I feel like I have climbed Mt. Everest ten times over. And I’ll do it all again tomorrow. Or maybe the next day. Because that is what TBI survivors , wait. No. That is what TBI-thrivers do.