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Brain Injury Brooke

Why don’t I feel like I’m making any progress recovering from my traumatic brain injury?

In the weeks following the injury, your brain will begin to heal at a rapid and quite visible rate. Anyone close to you will likely be shocked at what has happened to you and so want to be very positive when they are around you. The same people, as well as some healthcare professionals, may also be very encouraging and keen to point out any improvement that they notice. So for a short time, you benefit from the rapid natural healing process as well as having your own personal cheerleaders. You have survived a massive trauma when it looked like you were going to die, you have not, which causes people to be happy, you are a novelty! Realistically though this is not going to be the case in two years as the shock will die down and the people around you will get used to your condition and the new you with a brain injury becomes normality.

As you become less of a novelty and more of a normality, the initial accelerated improvements that you experience at first will get visibly slower, both to yourself and those that see you every day. Any progress you then make day to day is so small that it is unnoticeable. The decline in encouragement, together with the slower improvements, can convince you that all progress has stopped! Then your progress tends to be only visible by a third party that hasn’t seen you for a while, like a relative that you haven’t seen for six months for example who will notice the progress that you have made in that time.

The technical term is that you will hit a recovery ‘plateau’ meaning that is as good as you will get. As a Traumatic Brain Injury (TBI) Survivor 12 years post-injury, this is something I wholeheartedly disagree with. At first, I read that this plateau comes about three years after the injury. I was focussed on that three-year mark, which gave me a deadline for the time I would be 100% recovered. I held on to this theory right up until a week before the third anniversary of my TBI, secretly hoping for an overnight miracle! When I reached the three-year mark, I wasn’t recovered, and so I slumped into a depression. I saw myself as a failure and to be honest, what I didn’t need were any excuses to make me feel down!

Depression is a difficult subject and certainly not one I am qualified to advise on; I can only tell you how it has affected me. I kept getting so tired both mentally and physically, and the more I thought about it, the worse it got. I ended up praying for that three-year mark when I would be better. When it didn’t happen I thought this fatigue would never stop, I could never join in with anything my friends were doing, I was forever destined to be someone people felt sorry for, I could see no future and nothing was worth living for and all I could feel at the time was a huge emptiness. I spent a lot of time looking at social media; I couldn’t see that this was a highlight reel of people’s lives and that many photos were filtered as lives were made to look as amazing as possible! People close to me attempted to comfort me by pointing out others less fortunate but making me aware of more misery didn’t succeed in bringing me any joy! Whether I was actually ‘depressed’ or not, I don’t know, but it certainly wasn’t one of the highlights of my life!

There will be a natural healing process along with encouragement early on where you will see yourself improve quite drastically with minimal effort. In two to five years you will inevitably hit that plateau, but this is by no means the end of the line, it just means that further improvements are now down to you.

Having a brain injury was something that took me well over five years to come to terms with and 12 years on I am sure that I have not accepted it 100%, but one thing I can say for certain is that I have made no improvements when I have been in a negative state of mind. I have realised that nobody made me feel any way about anything, I am in control of my thoughts and I can ultimately choose how I react to a situation. If I am unhappy about a situation, I can do nothing in which case nothing will change, or I can do something about it.

Some symptoms of a head injury will disappear over time and some symptoms are permanent, meaning that you will have to find an alternative way of dealing with them. I have been left with a memory problem, but this is a story of how I came to use my smartphone to remember things for me.

I see my friend Ben who I had not seen for a few weeks one morning and arrange to meet that night in the local pub at 6 pm to get some food and catch up. However, I get a phone call from Ben at quarter past six asking where I am; I have completely forgotten! This is embarrassing, causing me to apologise unreservedly; this is definitely a situation I don’t want to repeat. I always try and take something positive from a bad situation, in this case, the positive I take from this is that I am more aware of my memory problem and how it can affect me in the real world.

The next time that I see Ben is exactly a week after the first time I saw him and I manage to convince him to meet in the local pub again, and for last week’s inconvenience, I offer to pay. However, because of what happened last time, trying not to forget our meeting causes me anxiety and attempting to keep something in mind is something that I find tiring, it drains my battery if you like. I understand that if I leave it to memory alone, I will forget. So, whilst it is fresh in my mind, using the calendar on my smartphone, I set our meeting as an appointment. I know that it is unlikely that I will remember to check my calendar, so I set the alarm to go off an hour before our meeting. After I have successfully transferred the information to my smartphone, I can relax because smartphones don’t forget (providing the battery is kept charged). I have now unloaded the responsibility and so relieved myself of the anxiety of trying not to forget.

5 pm comes around an hour before our meeting – again, I have forgotten about our meeting, but this time the alarm goes off to remind me that I am meeting Ben in an hour. My memory hasn’t improved, but I have ‘got better’ at remembering! The problem this time is that I was a bit peckish on the way home and I grabbed a sandwich, so I am no longer hungry. Out of politeness, I don’t cancel the meeting, but instead pretend I am not feeling great and just order something small (that I don’t really want!). I made the meeting on time, but I forced myself to overeat and wasted my money on the sandwich earlier in the day. This week I remember the meeting, but not in time, so I have made an improvement, but this technique still needs work.

We enjoy our catch up so much that we decide to make this a weekly meeting so whilst the information is fresh in my mind I transfer the information to my phone. Only this time, I set my alarm to go off one hour before and also an additional alarm to go off two hours before to remind me not to eat anything. The result: I show up on time to meet Ben, and I arrive with an empty stomach making it third time lucky for a successful meeting! At no time over the past three weeks has my memory improved due to any physical healing, but I have ‘got better’ at remembering things due to a memory technique that I further improved on.

Your physical healing will stop after a time, but it doesn’t mean that you stop improving; it’s just that now the improvements are no longer down to nature, they are now down to you. I believe that attitude and ambition has a major part to play in the improvement, and no progress will be made if no effort is made. This won’t happen overnight, learning new skills can be much harder after a brain injury, but just because it is harder, it doesn’t mean it is not possible. You will have good times as well as bad times when it may seem like progress has stopped, but in my experience, the only way that you will stop improving is if you give up!

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