Life with a TBI - Happy29's Blog

Happy29's Blog

Life with a TBI

Posted on May 25, 2015 at 07:42 AM.

I have a TBI "Traumatic Brain Injury" This is what it's almost like to be me. The only problem there really are no words that can describe what kind of life I live.

For those who want or need to understand what it is like (sort of) to be blind or deaf, that is relatively easy to accomplish. Block those senses. It doesn�t give an appreciation for what it is like to live without sight or sound day in and day out, but you get an excellent taste.

Understanding what someone with brain injury experiences is a big challenge. Brain injury puts us on a different planet, where sound, light, smells, gravity, thought and more are all amplified, thicker, stickier, harder, and otherwise completely different than you experience on Earth. Trouble is, we look like we live on the same planet you do, so what we experience is very hard to understand.

The following list is not as close a duplication of what daily life on planet Traumatic Brain Injury is like; however, it does come far closer than not experiencing anything. Here�s your ticket to Planet TBI:

Do not sleep at all the night before you begin this. Being sleep deprived mimics some of the stresses we live with all the time.

Wear at least one sound magnifying earbud (like hunters use), turning them to greatest amplification. Keep this in and on for all interactions. Many with brain injury experience intense sensory overload as our brains can not filter out sensory input. Things you normally ignore without realizing they are there are loud and disruptive, visually distracting, headache inducing smells, and more.

Wear on-ear headphones and iPod playing a type of music you find grating and stress inducing playing at a low lever (actually a medium level when amplified). Keep these in and on for all interactions. The constant barrage of stimulation we can�t filter out grates on us, much like always listening to music you hate. Also the stress of overstimulation creates difficulty not getting angry when seemingly small things happen (but to us, on our planet, they are huge weapons of attack).
Wear a magnifying lens over one eye (or a pair of high powered reading glasses with one lens removed). Every 5 minutes (see timer below), switch which eye the prism is over (you may need two pair for this). This helps mimic visual overstimulation very common for us.

Set an alarm to go off (loudly) every 5 minutes. When it does, stop whatever you are doing. Stand up. Turn around 20 times one direction, then 20 times the other direction while saying the alphabet backwards. We struggle to focus on anything we do, doing well to half task. This attempts to mimic these distractions, and show how hard it is to pick up where you left off. Also, many people with brain injury have some form of vertigo, so you get to taste that too.

If you�re warm, wear extra clothes. If you�re cold, wear too few clothes. Our bodies often experience difficulty regulating temperature, needing to huddle under a down blanket in the middle of a summer day, or wear shorts on a winter evening.

We could easily add more, to simulate a �hard� brain day (wear ankle and wrist weights, scratchy wool underwear, and more), but this will give you a taste, and we want your understanding, not your anger!

Live life as normally as you can until your normal bedtime, attempting to do all your normal activities.
End with a prayer for all with brain injury, that we be given healing and that we and our caregivers receive the graces of strength, courage, perseverance, and patience and love.

Everyone�s brain injury symptoms are different. This experience is meant to give a taste of what living with multiple deficits so common with brain injury is like. If you have a specific person in mind, you may want to ask them what they experience specifically, adding to this list to mimic some of what they live with.

Not sure you can handle a full day on Planet TBI? It�s the wimpy kiddy ride poser experience, but do the above for an hour and you�ll still get an appreciation for what someone with brain injury lives with all the time. Just make your hour at least in the afternoon after being up all night the night before, to get a better idea.

http://www.biausa.org/living-with-brain-injury.htm