Wednesday, October 21, 2009

Brain Injury and Controlling the Environment

My Lamp Post post brought in this comment:

Have you ever thought about wearing sunglasses and ear plugs when you know you will be in a situation that might cause you problems?
I don't know if sunglasses would help at all, but I'm sure ear plugs would. I like the silicone type for sleeping.
I love Anonymous' confidence in being sure ear plugs would work and deeply appreciate their good intentions. Thank you.

Yes. I tried sunglasses and ear plugs years ago. Both help but also cause other equal or greater problems. Instead, I always wear a hat to block out direct light both indoors and out. Earplugs don't work because when my ears are completely blocked I'm completely unable to cut through the vertigo. Nearest I can figure I use some sort of primitive eco location to help compensate for the vertigo. Whatever the reason, I need at least a small hole for direct sound transfer. I have custom hearing aids programed to block out, rather than amplify, sound, but they don't work on various tonal ranges and wind whistles loudly in them. I plan on trying a decibel blocking ear plug (rather than a solid one) in the near future, though I'm not sure if it will block my ear too much.  

All this points to one of the challenges of life with brain injury. It is common for people, including doctors, to dismiss survivors as faking or exaggerating our brain injuries simply because they don't understand how we can do _____, yet we can't do _______. (In my case, despite brain scans and neuropsych tests clearly showing the extent of my brain damage). I'm sure people in my town are baffled that I complain about wind chimes yet can run and hike for miles on the trails. For them it's the exact opposite -- they can't imagine running for miles and they don't even hear the wind chimes. Clearly something must be wrong! (It is. My brain is bludgeoned.). "You LOOK fine!" is one of the most frustrating things we brain injury survivors hear, because it echos of the implicit condemning, ignorant, arrogant judgement that we must be making a bigger deal of this than it really is. By definition, people only see me when I'm doing well enough to get out (unless the lamp posts of the world have gotten to me, in which case I'm slumped against a wall waiting for my Beloved to haul me off the battle field), so in their minds I'm always doing that well. If only.

A primary way of compensating for brain injuries' tendency to leave the survivor easily overwhelmed by sensory stimulation: control the environment. Because every brain injury is different this needs to happen differently. We have created my "hobbit hole" sanctuary room, where I go when I need less stimulation. It is fairly soundproof from the rest of the house, I can easily open or close the shades. It allows me to push my boundaries (necessary to create new neural pathways around the damage), while also have a place to recover when I've pushed as far as I can.

I am not yet good enough to be out in public places with lots of people. When I serve at Mass (about every 2-3 months), my parish wonderfully accommodates me by having a silent processional and recessional and minimal singing.

The farther we brain bludgeoned venture from a space that we can control, the riskier things get for us. The one exception for me is the wilderness. Nature has yet to short circuit me.


  1. This is an AMAZING Blog Patrick. I have been following you now for about 4 years (I am a member of the Google Groups CO Brain Injury). What you have written speaks VOLUMES to me. My "hobbit hole" is my home....a place I don't often venture out of, for the exact reasons you mentioned above.

    I have my big girl sunglasses as well as ear filters (though I find my iPod set to nature tunes is better for the same reasons you mentioned above.

    Thank you for being a voice for this sometimes, invisable disability.


  2. Dear Jennifer,

    Wonderful to "see" you here! I don't wish this on anyone, but am thankful for those who understand the journey because theirs is similar.


Please seek to uphold the dignity of anyone mentioned in your post. Thank you!