When my son Robert turned 18 he enlisted in the US Army as an 11 Bravo, an Infantry soldier. His first (and only) tour in Iraq was cut very short when the Bradley Fighting Vehicle he was assigned to drive was hit by an improvised explosive device. The damage was extensive, the worst of it being a compressive burst fracture of his L2 lumbar, which required a spinal fusion from his L1 to his L3.
The back injury was so easy for everyone to see, it restricted his every movement – completely redefining his life. He needed help in and out of the hospital bed they provided at home for him. Initially, his ability to walk was very limited – a few steps at a time with a helping hand, and gradually becoming able to move through the house without assistance.
But then there was the invisible injury, the traumatic brain injury. This was my first exposure to this term, and I was clueless about what it meant. All I knew is that he had hit his head hard and that there was an injury to the brain. It was listed as a secondary injury on the medical report, as though it didn’t represent a life changing outcome as well. He wasn’t counseled or given any information on what to expect, he was just told he had also received a TBI – we had to learn the hard way just what that meant.
The single biggest thing that we learned, and yes, it had to be learned the hard way, was that TBI is an invisible injury. Even the doctors at the VA hospital… in his many follow up visits, my son was only ever asked about his back – never once did they review the impacts or state of his TBI. Friends and family would ask about his back, how he was getting around, how his pain levels were progressing – but the topic of his TBI never seemed to come up.
That’s when we started to understand, TBI is only visible if it has visible physical impacts. If you have difficulty with speech or your working memory has been impacted to the point you can’t carry on a conversation, then people see it. If your injury has impacted bodily control or coordination, then it’s visible. And when it’s not visible, people don’t even know it’s there, forget that it’s there, or don’t truly understand the magnitude of the impact.
Even being at home with him every day, it still took me a while to begin to grasp just what he was going through. I’d see the memory issues, but really had no clue about the emotional impact it had on him when I’d casually remind him that we’d just talked yesterday about something he couldn’t remember today. Through time, I began to understand the depth of what was happening, and I was able to be much more supportive. Memory issues are the low hanging fruit on the TBI tree, and while it was the most obvious impact on him, it was only one of several changes to his life.
My experience as a TBI caregiver certainly helped me through my adjustment when I became a TBI survivor, but sometimes it’s most difficult to see that which you are closest to. I found that my son was the one person I could talk to who really understood what I was going through and could share some truly valuable insights from his own experience. He could not only be supportive, he could be completely honest and even help me to laugh at my frustration because he knew it all too well.
From this survivor’s perspective, the thing I needed most from my support group was patience and acceptance. I needed for it to be ok that I didn’t remember something important, and to not continually be reminded that I forgot something. I needed those around me to have the patience to give me the time to compose the words I was trying to say or to even just let the conversation go for now. Mostly, I needed my support group to be resilient and non-judgmental – for them to realize that I wasn’t always at the top of my game and my emotional control was tenuous at best. Sometimes the person who understands the very best is a person who has walked in your shoes.
I believe this post will speak to many people, as it gives a glimpse into TBI from the perspectives of both a survivor and caregiver. Thanks for sharing.