TBI Survivor Blog Series 2023 - My Incredible Shrinking Life: Facing Vulnerability

My Incredible Shrinking Life: Facing Vulnerability

By: Laurie Thomas

This post-concussion life is one of vulnerability. There are so many unknowns. When will I feel well? Who can I ask for help? How much can I do? When can I work? How can I have fun? Where can I find joy?

And with all the questions comes a teeter totter of hope and fear. Hope for the best life I can live today. Fear of my body and its reactions to ((gestures wildly)) everything. Hope for a future I now understand I have no control over. Fear of disability. Hope for hope. Fear of dependence when I can’t cobble together enough supports. 

This shaky balance of hope and fear is susceptible to every injury, illness, and stressors that comes along (Is it just me or do they come along far too often?). The everyday things I used to brush off and continue past can now derail me for days, weeks, or months. To deal with this vulnerability I’ve found ways to remind myself that I’m not powerless. I’ve searched for what I can control and how I can feel safe. Spoiler alert: this has made my life much smaller.  

Although I am a child-sized adult, my life used to be big and beautiful. Through trial and error, I have created a smaller life that seems to fit me. I have a comfortable routine. I have a comfortable set of expectations. I can eat certain foods. I can go to certain places. I can socialize with a certain number of people in certain situations. I can do certain physical activities. I can accomplish a certain number of things in a day. Usually. And on my good days I can still find beauty in all these things.

What happens when I want to go out and explore the big world of uncertainty though?  I recently started planning a big trip and realized my comfort zone would be replaced by a minefield. 

• What could I plan to do and how would I adapt if my body and brain didn’t cooperate on the day of that anticipated event?

  Adjust my expectations, try to be flexible, and pace and plan for less to enjoy more.

• How would I deal with the sensory overwhelm or migraines? 

  Adjust my expectations, try to be flexible, and pace and plan for less… you get the idea. 

• What would I do about my Mal de Barquement syndrome and other vestibular issues?
  Who knew?! Would I go from remitting episodes to permanent disability? Would the trip be worth it? 

There were no easy answers. My adult self wanted to dig a big hole and stick my head in it.  

Planning the big trip made me remember all the ways things could go wrong. It desperately made me want to fix myself. It made me fear and dislike my body. It seemed easier to shrink back and hide in the pockets of certainty I had carved out in my life. 

But, hold on. Perhaps it wouldn’t be shrinking if I accepted my limits? Perhaps a smaller life is living? That’s where I’ve learned to feel grounded after all. That’s where I’ve made new connections. That’s where I am vulnerable in small doses and check in with my abilities. That’s where I gently push my limits. That’s where I’ve been able to find moments of simple joy. 

In my smaller life, I am constantly aware of what I can’t control and how the fear can take over… but I choose to look for hope and happiness anyway. Maybe I’ll decide not to take the big trip. Maybe I’ll plan a smaller one. Maybe I’ll find the balance between being vulnerable and realistic. My path is far from certain at the best of times. Hopefully, even if I don’t take big chances, I’ll find beauty wherever I go.  

Laurie Thomas’ Bio:

My entire life, I have loved reading and writing, and I’m lucky enough to do what I love as an editor, writer, and mom. Although I have sustained multiple concussions throughout my life (All my clumsy, unlucky friends, raise your hands!), I have not lost my love of learning and communicating. Even when my speech was slurred or the words of others didn’t make sense, I found ways to connect with what brought me joy. I hope my stories can help you smile in recognition and hope.