Getting lost- living with TBI

My injury impacted my ability to tolerate, and understand, sensory input.   Too much noise, light, visual stimulation, physical stimulation, and I become overwhelmed and don’t function well.

Going shopping:   I must look odd.  I wear a floppy “coolibar” hat and sunglasses.  And have a death grip on the grocery cart.  These are coping strategies to reduce and manage sensory input.   Visually, I focus at the end of the cart and shop by grocery list.   I still have to use these coping strategies today to function in a store well.  I do better at the Safeway.  It’s smaller and more familiar, as I shopped there before the injury.

About a month after my accident, Carol took me to WalMart to grocery shop.   The noise, light, and visual input was insane.  I grabbed onto the cart and focused on one step at a time: one item at a time.  Carol was next to me, guiding the cart, and making selections for both of us.   At one point, she left me alone with the cart rather than maneuver down a crowded aisle.  I was frozen.   I can’t really describe what happened.   Nothing made sense.  It was a kaleidoscope of sensation and senses.  I couldn’t make sense of where I was, what I was doing, seeing, feeling.   I saw clearly, yet experienced it blurry.  The only thing that helped was focusing on one thing… the grocery cart.  All I felt at the time was fear.  I was lost, just standing in a store I had shopped in the past.  I literally could not figure out where I would go if I wanted to leave.   Carol returned and we continued the trip.  I struggled to continue to walk.   We went to her house and I slept for over an hour.

I still have difficulties in sensory rich environments. 

I go to Physical Therapy for both my head injury and my shoulder several days a week.  The PT office is located in the YMCA.    Although they have individual offices, walking to them is challenging.  In order to get to one office, we walk through a hallway, by the pool, up a ramp.  The office is located next to a gym.  I get lost.   As I walk, my only focus is the next step, and following the physical therapist.   Today, I could talk a little about what I was experiencing as we walked together, but I was still swaying on my feet,  and felt terribly lost and confused.  And it was almost impossible to find words to just say it was too much.   Needless to say, I get rides to and from PT.  I’ll talk more about physical Torture (I mean Therapy) for my head injury later.  The process is interesting. 

In familiar locations, I have fewer problems.  My home is quiet and relatively non-stimulating.  I feel good at home and feel like I function almost normally.   There are times I do better out in public; if it’s quieter or I’m well rested.  And I’ve noticed I can manage the sensory overload easier.   I try to focus on one sense and one activity or task.  I usually end up totally drained physically, mentally, and emotionally if I’m out too much.  It takes a lot of concentration and effort to function.  I end up sick  and usually get a headache or migraine.  And, then I sleep.

I still sleep at least an hour or so  in the afternoon and about 10 or so hours at night.


2 responses to “Getting lost- living with TBI

  1. Lydia,
    I wouldn’t wish this on anyone – much less someone who still has so much to live for. I so appreciate the words of wisdom you are writing. It’s a healing in process for all who read it. Reading how you’ve described the sensations of each step brings a level of awareness which will help all who either personally deal with a TBI or know others who do.


    • Thank you for your words of support and encouragement. Were you injured also? This is a challenge for me. I am very lucky that my prognosis is full recovery. The knowledge I gain, I will use to help others. Please help pass on this blog to others. I’m new to blogging and not sure how to best get it out. I’d like this to help others, family, friends, and head injury survivors.


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