Words Of Wisdom
Stress
Do your best to eliminate stress. Keep things simple around you. Lower your exposure to things that wear you out and make you tired. Avoid conflict. Very ‘good activities’ require data processing to handle by your brain. Even being with a lot of friends who love you for too long can absolutely thrash you. Do everything in moderation. Check out of social situations when you start to lag - and go rest in a quiet room.
Patience
It is going to take you a very long time to heal. You have to accept this. Give yourself a long timeline. ‘Type A’ athletes want things, and they want them NOW. A thrill. A rush. A wave. A few seconds or minutes of intense pleasure. Often they value experiences above people. Your brain works exactly the opposite. A head injury sometimes takes years to heal. Pain is a very good teacher. Slow down. Accept the fact that you are building a whole new organ inside your skull. It is going to take as long as it takes. That is your time line. Hang out with people who understand this. And be very kind to yourself. Head injuries are indeed life changing. But they don’t have to be the end of the world. Mine has made me a better father, a better husband and a better person. Almost losing your life is a very maturing experience. A whole lot that is trivial, selfish and unimportant simply drops away. All those things stand out in very stark contrast. A big wave can’t hug you, laugh with you, encourage you or make love to you. You can’t watch a big wave grow up – except as a menacing and imminent hold down headed your way. A big wave can be a temporary intense adrenaline thrill - assuming you catch it. But it is by its very nature, in its cold blue heart, out to kill you.
Acceptance
The biggest part in my journey was acceptance. Acceptance that everyone’s brain injury experience is different. I had to learn to stop being hopeful that someone else was experiencing exactly what I was experiencing. To accept when the treatments that helped others didn’t help me. This was particularly hard when it came to doctors, who would recommend treatments that didn’t work for me. I started feeling isolated and I came to realize this injury was going to be a lonely journey. I would be the only one who truly understood my brain injury. This may sound depressing when you have lots of hope and you’re trying your best but nothing is working. However, let’s face it, a brain injury is unlike a bone, ligament or any other part of your body when it is injured. This is because an x-ray or MRI can visually prove that a bone is broken or healing. As for the brain, there isn’t a way to get hard evidence of improvement or know when the brain is fully healed. Accepting the unknown in my brain injury journey has been very important in my healing.
Advice from Others
The question I found most helpful asking others was, “what has helped you during your healing journey?” I find this question is helpful because you can learn about other’s unique brain injury experiences without the expectation and hope that their brain injury journey is exactly the same as yours.
Neurogenesis
Neurogenesis is the reason you should never give up on your TBI recovery. What is neurogenesis? It’s the ability to regrow neurons, or brain cells. This ability is available at any age, and any stage in recovery, which is why setting time tables on brain injury recovery is so impractical. New studies show the rehabilitation of brain injuries decades out from the injury. “Neurogenic niches” are the areas of the brain where it is exceptionally easy to regain new neurons. Two of these areas are the hippocampal subgranular zone and the forebrain subventricular zone. These regions have been seen to activate neurogenesis after TBI to help repair the brain.
Self Belief
The chances of you reading this while you are down and out are, unfortunately, very large. However, I want you to understand one thing. You can achieve whatever you set out to do. Use a simple method whenever you face struggles. Many of us always think about what happens if we fail. But what if you shift your mentality, what if you ask yourself: what if I succeed? Samuel Beckett said it very well: Ever tried, ever failed. No matter. Try again. Fail again. Fail better. Get used to this. But find solace in this too. Every time you fail, youäre rewiring your brain. It’s pure hell. But it is all worth it in the end. My first goal was to get out of bed in less than 10 minutes. Did I think it was possible? To be honest, I had no idea. The only thing I knew there and then, was that I was going to do everything in my power not to be in the same state a month later. It is often more important to know what we don’t want, than knowing what we want. Make a decision of what you don’t want. And work every damn day towards that goal.
Understanding Your Injury
When you’re in the early stages of TBI, you forget things. It is not your fault. And the memory loss isn’t permanent. Write down your symptoms. Write them down hourly if necessary. Any and all information can be critical to give to your team. It is not your responsibility, it is your right to do so. This way you ensure you get the best treatment your medical team can provide you.
Knowledge
I have heard that there are 16 drivers that drive people in their everyday life, this is according to the Reiss Motivational Profile. If you are like me, you’re driven by knowledge and yearn to learn. If not, you might find learning a drag. In both cases, I strongly suggest you read up on what TBI is. Now, I don’t mean that you’d need to start reading scientific articles and page and after page of academic text. No. Find the way you learn best. Today we have access to so much information, YouTube, Google, Instagram, Twitter and Facebook to name a few. In my case, I learn the most by reading stories by other TBI patients. I also challenge all of the people I get to work with. I make them explain even the simplest of things. I also make sure I get to see everyone more than once. That way I can discuss the things they’ve given me to do. Usually, it takes a few weeks for me to work new things into my routine. So 3 weeks in between visits is a good gap for me.
Peer Support
I cannot overstate the importance of peer support. Once you get TBI, you get thrown into a world no healthy person understands. And they shouldn’t. But it sure does help to have people around that do. I had a person say “You shouldn’t think about your injury all the time”. And that’s awesome advice, which I’d be more than happy to follow. Now, this works, if you’ve injured your leg or some other body part. But what happens when you’ve injured the part you think with? Fatigue is something everyone experiences. But not on the same level we TBI patients do! That is why it very important to have peer support. I can’t express how good it feels to write: Holy crap I’m tired! In a WhatsApp group and get an answer from someone who knows what I’m talking about. Furthermore, discussing challenges we face with someone healthy can be crushing or uplifting. But sharing your daily challenges and trying to wrap your head around what changes you face, is always awesome to do with people that share your fate.
Family Support
Learn to say sorry. This goes both ways. It is normal for both the TBI patient and closest family to lose your nerve. In my opinion, it is healthy that this happens once in a while. It is good to vent. But, facing TBI is scary. And it is often fear that is rooted in most behavior changes. If you find yourself constantly battling your family, the problem might be you. And it can very often be fixed by saying sorry. Usually, someone with TBI is going through things they don’t understand. They are often very tired. They are often irritated beyond tolerable levels. Often they can be insufferable. But they need family support. Often just being there is enough. If they feel like talking, they will. Give them space. Give them time. But never discard them for long periods of time. They usually don’t have the concept of time. So, weeks, days and hours go by in a hurry. Often due to medication, aches, and pains.