Tag: diagnosis

Survivor’s Guilt

I am a member of a couple of support groups on social media that are meant for survivors of TBIs and their loved ones. These groups are useful but, as when I read books written by or about someone else who has had a brain injury, the other members are almost always dealing with things that John and I are not and have not. It creates a sort of survivor’s guilt for me and a sense of, who am I to write about my life when a lot of other people have it much worse with their partner? However, I am also bolstered by the feeling that there are a lot of spouses out there that may be feeling like me and maybe don’t feel like they have a place to commiserate.

John was diagnosed with a mild traumatic brain injury (MBTI). I wish the doctors would change the name “mild” because, to us, it’s anything but mild. It comes down to the use of language. Others hear “mild” and automatically discount it.

Northwestern University has a clear definition of the differences: (cited from https://bouve.northeastern.edu/nutraumaticbraininjury/what-is-tbi/severity-of-tbi/ on 11/9/2020.)

Mild, Moderate, and Severe TBI

“Traumatic brain injury severity is commonly described as mild, moderate, or severe. Injury severity is traditionally based on duration of loss of consciousness and/or coma rating scale or score, post-traumatic amnesia (PTA), and brain imaging results. Mild, moderate, and severe TBI may be characterized as follows:

  • Mild TBI
    • Brief loss of consciousness, usually a few seconds or minutes
    • PTA for less than 1 hour of the TBI
    • Normal brain imaging results
  • Moderate TBI
    • Loss of consciousness for 1 – 24 hours
    • PTA for 1 – 24 hours of the TBI
    • Abnormal brain imaging results
  • Severe TBI
    • Loss of consciousness or coma for more than 24 hours
    • PTA for more than 24 hours of the TBI
    • Abnormal brain imaging results

Severe TBI may be further sub-categorized as follows:

  1. Coma- a state of unconsciousness from which the individual cannot be awakened
  2. Vegetative State- a state in which an individual is not in a coma (i.e. awake) but is not aware of the environment
  3. Persistent Vegetative State- a vegetative state that has lasted for more than a month
  4. Minimally Responsive State- a state in which a person with a severe TBI is no longer in a coma or vegetative state and inconsistently interacts with/responds to the environment.”

Personally, it is tough for me to share my experiences, both good and bad, with someone who is dealing with a spouse who is incontinent, has seizures, had a major personality change, is aggressive or mean, is bound to a wheelchair and so on. Thank the powers that be that John has not had those things. Yet, what happened to him has been radically life changing for both of us and continues to be.

I hope others who might be feeling similar to me read this blog and feel like they have a place to share, be heard, or at least can read about someone who’s life sounds familiar to their own. Hopefully I can move past this survivor’s guilt that I have sometimes.

Symptoms

Traumatic brain injuries are like Baskin-Robbins, 31 different flavors. Each brain injury is different and unique to the individual. There are some common symptoms however. Below are listed the symptoms John has, followed by those that he does not have but that others may. The lists are not inclusive. If I have missed a symptom, please let me know.

I pulled my symptoms from my own experience with John but also with the help of the Brain Injury Alliance which offers a good list of symptoms.

John’s diagnosis is mild TBI with post concussive syndrome, with multiple losses of consciousness.

John’s Symptoms

In no particular order:

  • headaches
  • sees dark shapes in peripheral vision (he says they look like rats running against the floor boards)
  • double vision at distances
  • vertigo/balance (feels like he’s on a moving boat)
  • sleeping trouble
  • word recall issues
  • executive functioning problems – executive functioning is “the ability to organize and maintain behavior and change self-direction” (https://www.biausa.org/)
  • dysphagia – difficulty swallowing
  • dysphasia – “a condition that affects your ability to produce and understand spoken language. Dysphasia can also cause reading, writing, and gesturing impairments.” (https://www.healthline.com/health/dysphasia)
  • impulsive
  • difficultly reading and writing now (It takes 30 minutes of extreme concentration for John to type a few sentences of an email.)
  • frustration and anger at the loss of self and remembered abilities. (John’s background includes work in special ops; graduating summa cum laude with an MA in history and only having taken a page of notes due to a photographic memory; and graduating as a drug recognition expert as the youngest officer to do so with the shortest amount of time on the job. He remembers his ease of functioning through life before the accident.)
  • difficulty maintaining relationships
  • tremors
  • short term memory loss

Other Symptoms

  • seizures
  • personality changes
  • difficulty with reality
  • taste and smell changes
  • monotone speech

Those with TBIs have an increased likelihood of developing dementia and Alzheimer’s, as well as Chronic Traumatic Encephalopath (CTE). CTE has been especially common for professional athletes such as boxers and football players.

If you have any questions, concerns, or comments on this post, please leave a comment.