After my accident it was 3 months before anyone said I had a brain injury. Even then I thought it was a concussion. But it was a diffuse axonal brain injury, which only 10% of patients awaken from. Many are left in a permanent vegetative state. It was actually classed as a severe traumatic brain injury. So I was confused about the lack of information I was given regarding my injury.
The internet has a wealth of information.
As my partner James and I started seeing private specialists we built a better picture of what my condition was. Maybe I’m a control freak, but I keep reading more and more about it. Doctors advise against doing that too much because you can begin to worry about things you don’t need too. And I do agree with this point. But the temptation is too great.
My brain injury only happened 2 years ago, so I think I’ve made strong progress in that time. But I still don’t want to entertain the idea that this might be as good as it gets. A neurologist said it would probably be within the first 5 years that I might still see improvement, although the 2 year period is the standard. The more articles I read, the more I see that most say recovery happens within 12-24 months. So I’m beginning to panic that this could be it.
Why can’t I just do as I’m told?
There’s a reason why they say “ignorance is bliss.” I’m just torturing myself by continually looking for new information. As every brain injury is unique, just because I have a medical term for it, it doesn’t mean I will be a perfect example for what an article claims.
So why is it that although I understand this, I still do it? I mean how stupid can you get? A part of me wants to manage my expectations. Like how a child in a third world country doesn’t expect their parents to buy them expensive, indulgent gifts. They just want love, opportunities, food and water.
But reading about the long-term prognosis does frighten me. So I’m going to try to stop it. What will be will be. I need to concentrate on what I can do to improve my chances. Diet, exercise and tasks to challenge my brain.
I better appreciate why Doctors don’t want to be drawn on details.
Doctors talk in facts, but there isn’t much that anyone can be certain of when it comes to brain injury. So trying to guess can be a dangerous exercise. And there’s the impact that information can have psychologically, both on the patient and their family.
James has been incredibly supportive, but I know this process has been very difficult for him too. If we had been told all the awful things I have since read as soon as it happened, who knows where we would be. For many loved ones they would question themselves as to if they could go through this for the rest of their lives. And that isn’t a criticism as I don’t know if I could do it. I guess you never know until you are in that position. But it shows that by Doctors not giving you the warts and all version, they are doing the responsible thing.
So my advice is don’t keep looking for things as I have done. Just focus on yourself and your family. Life is what you make it, don’t waste it. And if you want to find out how I’m spending my time instead, read Next chapter after brain injury, am I in it now?