When a loved one suffers a traumatic brain injury, they can change so dramatically that you almost don’t recognize them anymore. You find yourself, months following the event, staring across the kitchen table at someone who looks like the guy you married but is not him anymore. Not only is this person disagreeable and short-tempered, he doesn’t like many of the same things he used to. The change is so profound, you’d swear that the fairies had stolen his soul.
What is anoxic brain injury?
My husband suffered an anoxic brain injury a little over ten years ago. I wasn’t ready for the changes that came or prepared to handle the aftermath.
Anoxic brain injury occurs when the brain is deprived of oxygen. The effects vary. Imagine an ice cream cone that’s been sitting so long the ice cream is melting. Sometimes whole sections slide away. In my husband’s case, he suffered thousands (millions?) of tiny fissures all through his brain.
The first year after an injury is the period when the injured person recovers the most ability. With my help, my husband came along very well but he was never going to be the same.
So many changes
This new John was irritable, prone to fits of anger over nothing, and rude. He displayed none of his previous industriousness, interest in world affairs, or sense of humour. He hated foods we used to love. He would do what he was told, if enough cajoling applied, but he completely lost his own gumption.
He lost most of his connections that had to do with engineering. He lost his ability to sequence his actions efficiently. For example, he would pick one pair of socks from the basket and put it away and then go back to pick up the next one. He was never going to work again
I know it all merely sounds irritating but the truth is the effect on me was one of profound loneliness. This was a guy I didn’t know and maybe a guy I wouldn’t even want to spend much time with.
Getting some of him back
Over the months, years, and now a decade bit of John returned. He still likes to sneak off to the coffee shop to have a coffee and a treat and he started to read again (this was quite recent). In the mornings, one of his favourite things to do (again) is catch up on world events but he does so now with physical newspapers. Now, we will even have some pretty good conversations again.
Getting some of him back from brain injury took an awful long time and an intimate knowledge of what he likes and doesn’t like and a lot of trial and error. I felt like I was leaving little offerings to the fairies so that they might be distracted and let bits of him come back.
Trial and error
Once I understood that he would not be able to work, I did notice that he still, if you asked him a question, could talk at great length about his experiences. So, I hooked him up with a crowd of makers. People who were getting together to build things, hoping that he could be of assistance to some of the younger folks. Sadly, this didn’t take, mainly because of the pandemic. On this, I will keep trying.
So many things did not take. We visited miniature train fairs, went down to the yacht club, bought him his own desk and computer, bought him an (albeit small) ham radio. None of this took but I think it was worth the try.
Another example is the changes in food preferences. Again, I kept putting things in front of him that I knew he used to like. I had to be a bit sneaky here and just not ask him what he wanted. As time went on, he would default to ‘no’ on pretty much every suggestion. I realized that this was more an attempt to assert himself as opposed to what he really wanted, so I would just bring the plate fully dressed and made a note of how much he enjoyed the food. With some small exceptions we are back to his old ways.
New things that were old things
One of his favourite things to do is sit and have coffee and talk about the world. “Shoes and ships and sealing wax” he would call it. Of course, he was locked in during the pandemic but as that eased I was able to send him off three times a week to adult programs. This is new but what does he like the most? The first half hour when they sit, drink coffee, and talk about nothing and everything.
Even the bad habits
Following a major event, it would be tempting to remake them in a better imageart of getting them back is getting back the parts you don’t like. He still spends too much time on the phone, fibs a lot, and is lazy about housework. Oddly, I find a lot of that comforting, even if I scold him about it. It’s part of who he was.
A trail out of the woods
In the old folktales, you could steal back your child if you fed the fairies well enough. But in life, the process is much slower. You breadcrumb them back.
If you are at home with a family member who has suffered a serious brain injury, I hope some of this helps you on your journey. Even as we contemplate finding a home for John (he is in his seventies now), the process of feeding the fairies continues. If the bread is sweet enough, they do let some of him back in wee, precious bits.
