TBI defined by the people who are living with it ...

BrainLine asked our online community to share their personal definitions of traumatic brain injury, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, sadness, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintainingrelationships.

We encourage you to add your own definitions, and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest. Click Here Brainline.org

A puzzle … all the pieces are there but in the wrong order. —Barbara

When the cursor disappears from your mental computer screen. —Dave

Brain fog, confusion, difficulty learning new things, being able to be “high-functioning” but being very slow at it. —Mary

An invisible thief. —Lisa

Devastating. Exhausting. Widely misunderstood. —Jules

Scary. I look the same but I feel like someone else. —Ann-Michel

MIA or AWOL … Missing in Action or Away Without Leaving! —Trish

An invisible memory-taker, mood-changer, life-changer! —Meg

Like being under a constant waterfall and I’m just trying to catch my breath and not drown! —Angie

Thinking with speed bumps. —John

Like an earthquake in my brain that knocked down bridges and damaged highways and knocked out some —but not all —lines of communication. Some of these things get rebuilt more quickly than others, and some are easily re-damaged. —Alison

Like having everything in your life suspended in Jell-O, and just when you reach out for something, the Jell-O gets blended. —Indy

A family affair … when a family member has one, it affects everyone. —Stephanie

A constant struggle for the rest of your life … you know how you used to be and you want your life back … but it won't happen … it's like living in thick fog. —Christy

Scrambled egg between my ears. —Graham

The absolute hardest thing that you can imagine going through!! Unbelievably frustrating and isolating. —Chelsea

Learning to live in a brain that sometimes feels like it belongs to a stranger. —Sharon

Forgetfulness and a total personality change. —Dana

Scary. Frustrating. Annoying. Funny at times … sometimes I feel rather than get frustrated about one of my deficits. It’s better just to laugh about it. —Sonia

Limiting, difficult, having to “relearn” things you thought you already knew. —Justin

Unpredictable and extremely misunderstood. —Ronda

Like having the flu all day, every day … for the rest of your life. —Nathalie

Trying to catch clouds in a windstorm. —Mary

Memory problems can be a major source of frustration after a brain injury. Different types of brain injuries or diseases can affect memory in different ways. For example, brain damage caused by a lack of oxygen in the brain (caused by near drowning or a heart attack) may cause the brain to have difficulty in storing new information. These people may quickly forget what they have done or are told (Hobler and Carey, 1973). People with damage to their frontal lobes because of a car accident may have difficulty retrieving previously stored information. Cueing can help these people access this information. Understanding the different types of memory can go a long way in creating a successful rehabilitation program and for choosing effective compensatory strategies. 

The following are different types of memory that can be affected by brain injury:

Episodic memory: is the memory of autobiographical events (times, places, associated emotions and other contextual knowledge) (Schacter, Gilbert, Wegner, 2011). Examples of difficulty with episodic memory would include forgetting about a visit with a friend the previous day. 

Semantic memory: refers to concept-based knowledge, meanings, understandings, factual and general knowledge (The Brain from Top to Bottom). These memories may include the knowledge of a phone number used on a daily basis or knowing the Provinces and Territories in Canada without knowing a specific reference as to where it was learnt.

Procedural memory: is the memory for specific types of actions. They are well established sequences that often involve motor skills (Squire, 2004). Procedural learning involves repeating an activity over and over again until it is automatically produced. This may include a child learning the route to school without specific directions.

Retrograde memory: This is the autobiographical memory acquired for the events that occurred in a person’s life before a brain injury. It is may include school, a wedding, or a family trip. Retrograde amnesia describes damage to this type of memory (Hunkin, 1995).

References: Hobler, K.E.; L.C. Carey (1973). "Effect of acute progressive hypoxemia on cardiac output and plasma excess lactate". Ann Surg 177 (2): 199–202. doi:10.1097/00000658-197302000-00013. PMC 1355564. PMID 4572785. Hunkin, N. M., Parkin, A. J., Bradley, V. A., Burrows, E. H., Aldrick, F. K., Jansari, A., & Burdon-Cooper, C. (1995). Focal retrograde amnesia following closed head injury: A case study and theoretical account, Neuropsychologia, 33(4), 509-523. Schacter, Daniel L., Gilbert, Daniel T., and Wegner, Daniel M. "Semantic and episodic memory". Psychology; Second Edition. New York: Worth, Incorporated, 2011. 240-241. Print. Squire, L.R. (2004). Memory systems of the brain: A brief history and current perspective. Neurobiology of Learning and Memory. 82; 171-177. https://www.facebook.com/TbiLifeC