Just finished the last chapter on my book TBI S-O-S. Now I need to revisit the whole book and do another round of edits. A lot has changed for me (for the better) since I started writing it, and I want the book to reflect that.
If all my life leading up to this moment is a rehearsal for this moment, then this moment is also a rehearsal for what’s coming later. You can improve your brain matter at any age. You can prepare for any eventuality. I’m convinced of it. I’m living proof that, even after near-disaster, without any clue what’s happening to you, recovery from traumatic brain injury (even a lifetime’s worth) is possible.
These three things have helped:
Understanding the nature of My Self as an expression of my own unique personal abilities.
The constant assessment — judgement or acceptance — of those abilities both by myself and everyone around me.
Repeatedly practicing my progressively developing abilities, all of which have led to further growth and improvements, strengthening and expanding my Sense-Of-Self beyond the limits it once had (even beyond the limits I had prior to my most recent injury).
Read the rest at: 9. The Best Recovery: A Life Well-Lived
It’s wrong, wrong, wrong.
And it’s unethical.
Who has the right to deny brain injury survivors hope?
Now, granted, it makes no sense to set high expectations of a fast recovery. Getting back in the game within days after a concussion or mild TBI is not only unrealistic — it’s dangerous. We know about the biochemical cascade that happens in brain injury / concussion. We know that it takes weeks for the cells just to clear out the gunk that shouldn’t be there. We know that returning to work or play can have lasting repercussions. And we know that the brain needs time to normalize.
But if you take a measured approach that’s common sense and gives the brain time and opportunity to recover, progress is possible. In fact, it’s probable. “Progress” looks different for every single person, absolutely. And some abilities may never come back 100% — while other abilities that were never there before may emerge.
It’s wrong to set expectations that you cannot go back to having a full and rich life after a brain injury. We need to adapt, certainly, and we need to be absolutely honest about ourselves and where we fall short AND where we are getting strong, so we can continue to improve. But even if you have to adapt to some pretty significant issues, you can still build back a full and rich life of your own. A life to live. A life of purpose and meaning and a sense of belonging to something bigger than yourself.
My big argument with how I hear people talking about brain injury recovery and rehab, is that while they may be technically accurate about how the brain functions, they’re missing the biggest piece of the whole puzzle — the effect of brain injury on the person who’s been injured. The state of the human spirit, the Sense-Of-Self… that’s ignored. Yes, there are approaches to retraining through occupational therapy, speech therapy… a whole lot of therapies. And regaining your abilities, to whatever degree, is so important to restoring every bit of life you can experience.
But for so many of us, the real injury is what happens to our soul — our spirit — the part of us that makes us US. The part of us we recognize, that person we have come to know over a lifetime… The person whom we — and all our friends, family, co-workers — are comfortable living and interacting with… It’s the hurt to that part of us — our Self, our Sense-Of-Self — that is the greatest injury of all.
But does that ever get addressed? Maybe with people of faith who have a religious practice to turn to. Maybe with people who have a spiritual or meditation foundation. The thing is, brain injury can seriously disrupt that for us. I, for example, went from being a very “spiritually connected” individual who had a constant sense of being connected to everything, to having no religious or spiritual sense at all… and not even being able to fathom why anyone would. On the other hand, some people become very religious/spiritual after a brain injury. So, spiritual aspects can be tricky, and unreliable.
Religion and spiritual practice can do a pretty good job of helping with a loss of fundamental Sense-Of-Self. Especially with their rituals and routines. But not everybody has that to rely on. And not everybody can relate. That leaves a massive gaping hole in the puzzle of brain injury recovery that I haven’t seen addressed in a systematic, deliberate fashion. Here and there, we’ve got studies and papers about the subjective experience of brain injury. But how do you compose a research paper on the Self? How indeed?
But it’s so, so important. And that’s what sets brain injury apart from other life-altering experiences. All those other life changes we go through … the lost jobs, the changes in fortune, the losses and wins, the inevitable shifts in our situation brought about by the march of time and life being what it is… unless we’re brain-injured when those changes happen, we can face the uphill climb before us as who we know ourselves to be, and we can fully participate in those changes with at least some confidence that we can make it through. Because we recognize ourselves. We know what to expect from ourselves. And when we have reactions to difficult things happening, they’re predictable, familiar, and they reinforce who we know ourselves to be.
Brain injury, on the other hand… that’s such a tough one, because at the same time that our circumstances have changed, our brains have changed, our personalities have shifted. And even the smallest alteration in how we experience things, how we react, how we understand our place and abilities in any given situation, can confuse and disorient us… sending us into a fight-flight tailspin that can take us out — along with everyone and everything around us. Rage erupts. Tears. Frustration. We throw things, break things, attack. Because we’re being attacked — or so it feels. Our very existence is in danger. Because we don’t know who we are.
It doesn’t just happen overnight, either. It can, certainly, but the real damage is cumulative. It builds up over time. One confusion after another, after another… one unexpected mess-up after another, after another… one missed cue, missed clue, misspoken word, misunderstood statement after another, after another after another… We can get to a point where we have no idea who we are, and we don’t know how to even begin to find that out again. And as our friends and family and trusted others become hopelessly confused and alienated and slowly drift away from us… weeks, months, years on down the line… we end up alone, confused, and often unable to understand why.
This is what comes to mind for me, these days, as I navigate all kinds of changes at work and at home. My job is not secure. Or maybe it is. I don’t know. Supposedly, they’re going to lay off thousands, when the time comes. Will I be one of those thousands? If it turns out great for me, due to this pending merger, then great. But I have no way of knowing if that’s what’s going to happen. I don’t even know if I want that to happen. I’m tired, to be honest. I’m tired of being positive and hopeful and pro-active and a team player. I really just want to remove myself from the world, curl up in my dark cave, sleep, and lick the wounds I got from going tooth-and-nail at the world.
But I can’t. That’s not like me, and I know it. After years and years of being confused and disoriented and turned around, I actually have rebuilt a durable, solid, predictable understanding of myself. I have a renewed Sense-Of-Self, like never before. This sense of knowing myself actually feels brand new for me, even though I used to be pretty darned sure of who I was, before I fell down those stairs and hit my head in 2004. And some days I don’t trust it. Even the feeling of familiarity feels unfamiliar to me – if that makes any sense.
Still and all, I’m willing to live with that unfamiliar familiarity. Because I’m getting used to it. And I recognize my reactions to situations that arise, even if they are confusing. I’ve gotten familiar with my confusion. I’ve gotten used to my disorientation. And I know what to do about it. For me, nowadays, brain injury recovery is not so much about having everything be the way it used to be (I used to feel that way), rather, it’s about developing the skills I need to just deal with whatever comes up, when it comes up.
Because it will.
The question is, will I be able to deal with it all?
After all these years of working at it, my answer is YES.
That gives me hope — and a whole lot of it. I hope it does for you, too.
Ken Collins shares his wisdom with us. Great stuff!
Some of the lessons I have learned after 39 years of living with a brain injury.
There are four major areas to work on during the brain injury recovery process:
Adapt, Improvise, Overcome and Move On!
Move on and try not to be critical of mistakes you make because in the early years of your recovery there will be too many to count.
Learn from these experiences and move on.
Keep stress and anxiety to a minimum everyday!
Stress and anxiety triggers the fight or flight response in the mid-brain. You don’t have any control of this response because it is part of the Emotional Nervous System.
When the fight or flight response is activated it will increase confusion and make it harder to process information.
Under stress – be proactive, stay focused, calm and relaxed as much as possible. This will make it easier to think, process information and be less dependent on others to remind you. Reducing stress and anxiety will make life easier and increase your self-esteem.
These free self-help tools are on the Youtube and have been very useful for me to control stress and anxiety:
Emotional Freedom Technique—EFT http://www.emofre.com
Eye Movement Desensitization and Reprocessing -EMDR http://www.emdr-therapy.com
Mindfulness Meditation http://www.minfulnesscds.com
Mindfulness-based stress reduction can be used to help you control stress and anxiety. Find purpose and meaning in your life again because this will make it easier to get out of bed in the morning. Having a sense of purpose and meaning will give you something to live for. This will also help you feel worthwhile and help motivate you and improve your recovery process. This will also relieve stress and anxiety because you will start feeling better about yourself.
Get a Day Planner and write down appointments and other important things you need to do. An iPad, iPhone, other smart phones or note pads will work very well because they have alarms to remind you. These tools will help you rebuild your life and stay oriented to time and place. These devices also have GPS and maps.
Don’t depend on others to remind you.
By becoming more responsible for yourself builds good habits on your part and will improve your self-esteem and self-confidence in the long run. This will also relieve stress and anxiety.
Get a Large Calendar and put it up on your wall and use it. Put it up at a location in your house or apartment where you will always see it every day. An iPad, iPhone, other smart phones, note pads with calendars and alarms do the same. This will also relieve stress and anxiety by helping you to stay on task and not forget.
Get a Key Holder and put it by your door to put your keys when you come home. Do this every night so you won’t have to look for your keys in the morning. Starting your day off on the right foot will make your day easier and help to relieve stress and anxiety.
Make a To Do List to help you stay organized. An iPad, iPhone, other smart phones or note pads will work wonders with this. These tools will help you stay organized, feel good about yourself and will help to relieve stress and anxiety.
Making a list before you go shopping will also save you money by cutting down on impulse buying. It will also help you become more responsible and less dependent on others. Being less dependent on others improves your self-esteem and relieves stress and anxiety.
Get lots of rest and slow down. Many times we try to do too many things at once and nothing gets done. Sleeping on an issue or concern can be the best way to help you figure it out. Getting enough rest will give you valuable energy to think better and problem solve difficult situations. This will also relieve stress and anxiety.
Set up a routine and stick to it. This will help to relieve stress and anxiety and make it easier for you to follow through with what you have planned for the day. This will also help with building familiarity. By doing the same thing every day you will start building trust in your capabilities again and this will increase hope.
With hope anything is possible.
Eat healthy foods and get lots of exercise. This will help you get the energy you need to get the blood/oxygen circulating to your brain. Get a dog and take it for walks. In my case – I have 9 dogs and they take me for walks every morning and night. They also give me the unconditional love and companionship I need to feel good about myself and be happy. This also relieves stress and anxiety.
Find ways to relax that aren’t counterproductive to your well being. Abusing alcohol and drugs to “relax” is counterproductive. Taking long walks, meditation, Yoga and Tai Chi are much better for you and will make processing and problem solving much easier. This will also relieve stress and anxiety.
Be patient and pay attention. Become an active listener. Hearing what people have to say is more important than listening to what they say. Watch their body language. Sometimes when I get distracted – it is harder to understand what a person is saying. Stay relaxed and focus. Take deep breaths because nothing works better than getting blood filled oxygen to your brain. This will also relieve stress and anxiety.
Be around positive people and people who care about you. Nothing is more depressing than listening to someone always complain about their life and what is going wrong in the world. Become active and don’t just set around hoping things get better. Quit talking about it and do something about it instead. Staying active reduces stress and anxiety.
Friends who judge others and criticize you aren’t friends. Don’t take criticism personally because constructive criticism can make you a better person in the long run. Remember that your family and friends want to help but sometimes they don’t know how. When people don’t understand things they criticize it. Many people don’t understand what you are going through so don’t hold them responsible for because of this.
Keep an open mind – stay calm – stay relaxed – take deep breaths – move on!
Be careful of who you hang out with because they will set the stage for how you act.
Grudges will only hold you back. They will be like an anchor and hold you back from being able to move on.
Lighten up on yourself, your family and friends who want to help you. Worry less and smile more. Be content with what you have because there are others how have it much worse than you. Find ways to stay active and less isolated.
Get out of your head and into the outside world.
Don’t give up – Embrace Adversity!
Get off the pity pot – be strong and move on.
Have adversity give you the resolve it will take to get better and improve your life. This will be up to you and no one else! People will be there to help you but all of the work will be up to you. Use it or lose it!
Take ownership of your recovery and get rid of the word “can’t” in your vocabulary.
Life is hard for most people. Life after a brain injury will be hard but not impossible.
Life after a brain injury will get easier over time – be patient! Make the best of everyday and move on.
Thinking too much about a problem or issue can be depressing. This will trigger the fight or flight response and you will be like a dog chasing its tail because of the increased stress and anxiety.
Be good to yourself and don’t take life so seriously. Don’t let the little things get you down because when you think about them long enough they will become bigger than they really are!
Don’t beat yourself up over things you can’t control because this will only increase your stress and anxiety and trigger the fight or flight response!
Be happy with yourself and don’t try to live up to others expectations. Most importantly – don’t set unrealistic expectations for yourself.
Take one step at a time – don’t run before you can walk.
Enjoy what life has to offer and take pride in your accomplishments!
Every accomplishment is a victory – no matter how small.
Every day is a new day and learn from yesterdays mistakes.
Be good to yourself because you are the only thing that is important!
Live life freely and don’t put up obstacles for you to overcome.
Adapt, Improvise, Overcome and Move On!
Everything is up to you and no one else.
Every single day, I become more and more convinced that, more than anything else, brain injury recovery is really an exercise in learning.
- It’s learning to do things differently.
- It’s learning to know yourself differently.
- It’s learning new things about yourself.
- It’s learning to NOT do things that have stopped working — or that never worked, to begin with.
I’ve been watching YouTube videos on neuroscience. Learning about synapses and neurons and the stuff that makes our brains (and central nervous systems) work.
Here’s a video that’s admittedly a bit “dense” in terms of science and terminology, but which I found quite interesting. Did I understand all the terms? No. But I think I got the underlying concepts.
It’s an amazingly beautiful day today. I didn’t get enough sleep, last night, and I’m feeling foggy and a little ill, but nonetheless, the outdoors awaits.
I’ve been thinking a lot about how I got my Sense-of-Self back. It has been back for at least a year, now. After feeling like a stranger in my own skin for years and years, I finally feel like me again.
How did this happen?
I think it’s really been about habit. Developing good routines I can do, every single day, and also developing the discipline to follow through with things. It’s been difficult, but it’s been worth it.
As an example, this morning I took care of a Sunday task that I often leave until the end of the day. It drags me down all day, filling my mind with dread, and sapping my energy. But it needs to get done, every single week. No exceptions. So, this morning after my breakfast, I just sat down and did it. I spent maybe 20 minutes on it, following a series of somewhat complicated steps that have to be done in a specific order. I mess them up, now and then, but this morning I was totally focused on them. And I got them all done in good order.
And by 8:00 a.m. I was done with that, and ready for the rest of my day. I felt so fantastic, I was trotting around the house, and my spouse wondered why I was so chipper.
It’s because I did that unavoidable task exactly the way it was supposed to be done. I followed my own detailed instructions. I did my weekly duty. And the successful and smooth completion of it all left me feeling with a real sense of accomplishment, as well as a renewed sense of myself as a capable and … well, good human being.
I firmly believe that TBI robs us of a Sense-Of-Self by changing our internal reactions and our long-familiar capabilities, and thus making us into someone we don’t recognize. Even the slightest of changes in our accustomed inner experience of life can make us feel like a stranger to ourselves.
But when we re-learn how to do things, and we grow accustomed to the experiences we’re having with them — when those experiences become familiar to us again, just as our old experiences were — we can once again recognize ourselves… and get on with our lives as the capable people we once knew ourselves to be.
TBI recovery is very much about re-acquainting yourself with yourself. It might be a whole new you, in some ways, but it’s still you.
You just need to learn to recognize yourself.