At some point during this 43 year “trip” I’ve spent living with a brain injury, I got fed up: too much of my mental energy was being spent getting frustrated and angry because of things other people said to me. That was the moment I decided that I should not allow my mental health or my well being be dependent on the words of others.
I saw that no matter how much I tried to teach and inform others about brain injury and me, I would never be able to control what they actually thought about me and what they said. The only thing to do was learn to control the one thing I could: my reactions.
In order to change my reactions I had to change how I heard things. When people made statements that I thought were misinformed or insulting, about me and how /my brain injury was/wasn’t affecting me, I stopped looking at it as an attack, and instead began to look at it as if they were just testing me. When I looked at it that way, what I had once thought were uncaring insults and degrading comments became exams; tests given to me in order to see how far I had come on my road back.
I would pass or fail the test based on my reactions.
Each time I went ballistic because someone said something I didn’t like, I was failing the test. Getting defensive and trying to “convince” others who wouldn’t listen or didn’t understand would make me emotional and cause me to lash out in anger and frustration. Not only would I fail, I was losing my power and my dignity.
On the other hand, if I ignored their words and had no reaction, I would pass the test. But ignoring wasn’t easy. I wanted badly to defend myself, and ignoring those hurtful words seemed to go against everything I stood for. What allowed me to ignore their words was learning to not take what they said personally, almost as if I didn’t care.
In order to pass each test, I developed these three statements to help:
I’m not made of glass, and I won’t break if you say something I don’t like.
I will not let the quality of my life or how I feel about myself depend on your ability to either, understand what’s going on with me, or to talk to me a certain way.
I recognize that it would make life just a tiny bit easier if others could understand and validate me, but I’m not going to expect or demand that because I have the strength to move on.
When a person said something I thought was wrong or they doubted what was going on with me, my immediate focus would be on not acting impulsively, and, instead, working to stay calm. I saw the importance of, instead of just reacting, stopping for a second to think about the three statements above to help calm me. These became my mission statements. Once I ran through the mission statements in my head, I was ready to not take their words personally.
Don’t Let Words Bother Me
Finding the strength to be solid and in-control was not easy. Certainly, in the early days when I was most vulnerable and a long way from being able to stand on my own two feet, I rode a roller coaster of emotions, made worse by my reactions to what others said to me.
When I pushed myself to take a hard look at what was really going on, I saw that my reaction to hurtful statements was caused, not just by what they actually said, but also, by how I felt about myself. When I looked deep down, I saw that the honest-to-God truth was that the reason I reacted so poorly to what people said was because of the low opinion I had of myself; if I hadn’t felt so helpless and unworthy, and, instead, had a higher opinion of myself, I wouldn’t rush to interpret those things people said as mean, stupid or insulting.
If I was stronger, those words would bounce off me as if were a superhero.
I couldn’t stop people from saying things, so I had to change the way I heard their words and learn to be that superhero by not taking what they said personally.
I knew it would be tough, but I had to find a way to be stronger and more secure in myself.
My Well Being
I don’t have to put myself at the mercy of others. I don’t have to let their thoughtless words affect me, and I have the right to live my life on my terms and in my way. The old saying, “Sticks and stones will break my bones, but words will never harm me,” became my mantra as I worked to take my life back. I was all done putting my well being in the hands of other people by expecting or wanting them to be a certain way, and by giving them so much credibility.
Others can say things to us that can feel like a gut punch that sends us reeling. Words can really hurt. When others, especially those close to me, didn’t believe me or belittled me or my injury, it was incredibly upsetting, but fighting back by arguing or getting frustrated and angry was not the answer. I had to be that strong person, that superhero, and show them who I was and who I was committed to be; that would have much more value and credibility than trying to defend myself in an argument I couldn’t win.
We, TBI survivors, who can get confused about what our life has become and our position in the world, yearn to be understood and validated, but we cannot demand that or expect others to behave differently..
We win by showing who we are, and by being above the fray and not taking things personally, as difficult as that might be.
Some acts are obviously courageous: a person runs into a burning building and saves a life, or a bystander dives into a lake to save a drowning person. These are dramatic examples of courage and bravery, when people make spur of the moment decisions and put their own lives at risk in order to save others.
There is, however, another, harder to see type of courage, and to appreciate it you’ve got to pay attention because this isn’t dramatic and doesn’t get lot of press. I am talking about the “we have no choice, wake up in the morning and do your work” kind of courage: the kind exhibited by TBI survivors who get up every morning, and slog through their confusion, frustration and anger to fight the daily brain injury battle with no fanfare and no immediate reward.
Think about that. People like you, TBI survivors, live a brave and courageous life simply by facing the battle, head-on, each day; the difficulty and commitment of which is something few people understand.
Your courageous-ness needs to be acknowledged, and that is what I am going to do right now.
The Courage of the TBI Survivor
A courageous person doesn’t usually consider themselves courageous or special. Rather, they act out of a feeling of obligation, or need, and because of this, true courage is often marked by humility. While it is normal and healthy for people to feel pride in themselves or feel good about what they have done, it is a characteristic of courageous people to just do their job because that is what they do, and to not consider themselves especially courageous. They are just trying to live their lives the best way they can and do what they think is right.
In the case of you, the TBI survivor, each one of you exhibits great courage as you attempt to rebuild your life. While it would be nice if others could see that or were able to understand what you go through, it’s much more important that you understand that you are fighting an honorable, courageous battle, and that the rewards you get are a product of being in that battle, and they are priceless. You should also know that other people will probably never understand it.
The TBI survivor’s rewards for being courageous are: 1) be able to live your life in a manner you find fulfilling, and 2) the knowledge and the feeling you get from knowing you have accomplished something great, even though others may not see it.
There have been very few times in my life when I have been acknowledged for what I have done; not because people don’t care, but simply because others just don’t understand. One time, I was speaking with a girl I had just met in college and the conversation shifted to the fact that I had been in a coma for a month. She stopped, looked at me and said, “You must be the strongest person in the school.”
I can remember being completely floored and not knowing what to say. I sheepishly shrugged my shoulders and walked off. That was so nice of her to say, and so completely unexpected.
How I reacted was an example of how we can be affected by our self-image. I couldn’t accept a compliment from her because, in my own mind, I was a long way from what I had been before my TBI, and not worthy of such a compliment.
That is a huge issue. Many of us can feel so unworthy and downtrodden, it is not only hard to let compliments in, we blame ourselves for too much and apologize too often.
When people pay you compliments; try to really listen to what they are saying. Don’t deflect them or refuse to believe them. Try to understand the magnitude of what you are doing. So many of us think we don’t deserve it because we aren’t what we used to be before our Brain Injury, and that we are not worthy of praise.
But you are.
You all are courageous and you are worthy
It’s hard to measure or see, on a daily basis, the results of your courageous-ness. Progress can be agonizingly slow. Add to that the fact that you aren’t performing up to our old standards, and it makes accepting any type of praise difficult. No matter how well you are doing things, it never seems good enough.
However, each day you grow. You learn. You become.
The courageous-ness you exhibit is not for a one-time event. It is on display every day, starting when you wake up and drag yourself out of bed to fight an invisible and silent opponent. In many ways life becomes a grind, one that’ll chew you up and spit you out if you let it; but you battle. You fight for your dignity and your life, and by being engaged in that fight you gain so much. That’s a hard thing to explain to someone, but you know.
Your courage is not rewarded, and is, in fact, many times overlooked, mostly for the following reason: people are unable to recognize it. Most of you heroes toil in obscurity for what you think is important; simply because that is how you need to live your lives.
There is dignity and honor in the way you live your life, and you should be proud of every thing you have accomplished.
We love those uplifting, feel good stories about survivors who have battled adversity to create a life following brain injury; who have proven doctors and doubters wrong by raising themselves from the ashes.
These stories are good for the human spirit and good for the soul; handing us doses of confidence and inspiration by focusing on the best of our human qualities; demonstrating, for all of us, the possibilities in life.
However, there are TBI Survivors who find it difficult to relate to these feel good stories. These survivors are the “silent ones”, who we don’t often hear about because they don’t make movies or write books or articles about these brain injured individuals who struggle to find a way out of the rut they are in; who can’t get themselves to make meaningful progress; who flounder and feel unsuccessful despite having the best intentions.
The battle back after brain injury is long, hard and frustrating. It takes an enormous amount of mental strength and fortitude, not only to bring yourself to the fight, but to stay in the battle day after day. There are many who desperately want to get better; who want to keep fighting after brain injury, but they get bogged down, unable to find the will to make it happen day after day.
What Do We Mean by Will?
The Free Dictionary defines Will as, “The mental faculty by which one deliberately chooses or decides upon a course of action.”
The will to positively affect our lives is one of those things that, as human beings, we all like to think we should have. And it’s not only us. Often, others expect us to be able to exercise our will with ease. They say, “Just make up your mind and do it,” or “Where there’s a will, there’s a way.”
There is no denying there can be value in these oversimplified sayings…for some people. However, in our messy lives, making “choices” and exercising our will is not always clear cut, especially when brain injury is involved.
There are those among us who are doing their best but find it hard to keep up the fight, who face hardship daily, and who want to shake their head and scream when people tell them to “Just do it”, as if all we have to do is flip a switch and we can find the will .
As Yoda would say, “Easy, it is not.”
Why/Why Not– Me?
My college roommate would ask me how I was able to do what I did after my brain injury: relearn how to walk and talk, go back to college, graduate and work, while he was unable to get off drugs. I didn’t have an answer. I wish I had some answers for him or even some hints because he might still be alive.
Two of my roommates died too young. One kicked drugs. One didn’t. Both had the desire and the want to get their lives straight, but only one had the will to follow through and complete the task. My other roommate couldn’t find the will, and you know what? It wasn’t his fault. He didn’t know where to look.
Where Do I Buy Some Will?
What makes it super complicated for us who have experienced a brain injury is that the ability to exercise our will can be compromised by some of the things that go hand in hand with brain injury; distractedness, short span of attention, depression, physical ailments, judgement issues, motivation, etc., and the situation can be made even tougher by financial or familial difficulty.
Finding the will to persevere can be elusive, but maybe we can find ways.
Understanding Your Will
Just wanting something doesn’t guarantee we have the will to get it. If we try to understand that having the want is different from having the will, perhaps that will help us because then we can develop a better understanding of what it takes to actually find the will.
In order to begin to find the will we have to discover what drives us and what motivates us to accomplish things, and it is important to understand that this is a process. Why some of us are born with a personality that keeps us driving forward, always in action, is a mystery to me, and, for many of us, our will is not going to magically appear to lead us to the promised land. Our will may need to be manufactured and nurtured.
Manufacturing and maintaining our will starts with having the ability to look forward and seeing that the future can be better than the present. Then we must want that for ourselves so badly that the want blossoms into the will. We must see that there is some benefit that will come as a direct result of, not only, putting in the work now, but also continuing to do it day after day with little immediate reward. You almost have to relish the idea of taking baby steps and persevering with a goal in mind, and as difficult as it is, learn to accept and appreciate the exquisite slowness of your progress.
Having the will and exercising it is not glamorous or sexy: there are, most likely, no celebrations or public acclaim. This is just hard, lonely work, and in order to work that hard you have to accept and be comfortable with yourself and your situation.
The journey can be rocky. There may be times when you’ve had enough and you don’t want to do the work anymore; it can all be so overwhelming and might even seem pointless. It is enough to make you want to stop, but remember, no one has the will all the time and there might be times when need to take a break. You need to be good to yourself. You are in it for the long haul.
The story of our life starts the moment we are born into this world. Our story is full of what makes us human: joy, failure, triumph, heartbreak, perseverance, love, facing obstacles and learning what it takes to live.
As stories go, each story has a beginning and has an end, and we, at some point during our lives, become aware of our mortality and learn to deal with the concept of death in our own way:
Some of us pretend we are indestructible and live as though we will not die: hoping to pass in our sleep or have our death be instantaneous; wanting to be blissfully unaware that death is on our doorstep when the time comes.
Others grudgingly accept the reality of death: although we know it will someday come for us, we try to keep it away by not thinking about it. In other words, we choose not to deal with it, and, although we know it is there, we tuck the thought of death away in a corner where we can’t see it.
There are still others among us who actually embrace the idea of death in the hope that by doing this, the lives we live will become richer. We hope to die a “good death”, unafraid, desiring to teach others and leave a legacy by how we choose to approach the end of our lives..
Our Relationship with Death
Our feelings about death, or our relationship with death, can change when we experience a serious illness or a traumatic injury such as a brain injury. In very general terms, those of us who have suffered a a brain injury have had a closer brush with death than others who have been in good health, and and our feelings about death can be influenced by this.
My life has been greatly impacted by my brain injury, but my TBI has also changed the way I, personally, face the idea of death. For one thing, I probably think about my own death more than the average person does. I don’t dwell on it or wish for it, but I think of my eventual death as a natural byproduct of my life, and, above all, I want to be ready when it comes.
They way I look at death has been influenced by a singular experience: I went from being an active teenager one instant, to waking up in a hospital bed a month later, wondering what happened to me. That makes me feel that I want to know and understand when I am dying. I don’t want it to just happen without me knowing it.
Brain Injury changed my life and my relationship with death. There were years when fear of the future, depression and despondency prompted me to wonder why I was even alive. I never seriously contemplated suicide, but I would occasionally say to myself that it didn’t matter to me if I died that day. At the time there seemed to be nothing to live for; I didn’t think I would be missing anything by dying, except perhaps more confusion and heartache.
However, I wasn’t entirely comfortable with those thoughts; they were such a dead end and didn’t make me feel good. To combat them I looked for things to live for so I would care if I died; things that meant something to me, things I found important.
I saw I needed to take an active role in creating a new, meaningful life so I could live the best life I could, and, hopefully, die a good death.
Instead of telling myself I wouldn’t mind if died today, I began talking to, and treating, myself differently. I started checking in with myself, almost daily, asking myself questions like these:
What if I die today?
Will I be ready?
Will I feel as though I have done all I can with the tools I have?
Living, So I Will Be Ready to Die
I know full well I can die at any time, and I want to make sure I am making the most of my life. Living does not mean I want to make the most money. Nor do I measure “living” by the number of “things” I do or have, or places I go. I don’t have to be “successful” in the classic sense.
I think about what I value. I think about the TBI battle that has taken up much of my life, as well as the progress I have made and what I have accomplished, however small and meaningless to anyone else. I don’t feel a need to defend myself when others don’t understand what I mean by “living”. My life, living with a brain injury, is often very different from other peoples’ lives.
I measure my time on earth by the number of people I have been able to have a positive impact on. By the richness of my life. By what I have learned. By things one can’t measure.
If I die today I will definitely miss some great things, but I and my loved ones will know that I have given my best, despite whatever hardships I have faced. I hope they know that the hardships I have faced have not taken away from my life, but in a strange and inexplicable way have added to the richness I have felt and the joys I have known.
I get a laugh when I mention to somebody that I lost my car in the parking lot and they respond with, “Oh yeah, I do that all the time.”
I know they are just trying to be cute and funny or to find a way to make a connection with me, but what these people don’t understand is that there is nothing cute or funny about a brain injured individual having to deal with constantly forgetting, misplacing or not understanding.
I’m sure many, if not all of you, understand exactly what comes with saying, “I lost my car again,” when you have a brain injury.
You know about the confusion as you stand in the parking lot trying to remember where you parked, unable to figure out why you can’t do something simple like remember where your car is. You know how that confusion gets worse, not better, the more you try and figure it out. You know about the frustration that comes with forgetting…yet again. You feel that not knowing where your car is parked is a reflection of what your life has become, and that these type of things, which are just nuisances to other people, put you deeper and deeper into the suckhole.
The last straw is that losing your car brings back every fear and frustration you’ve ever had, making you feel as though you don’t belong on this earth.
I almost fell into that God-forsaken trap the other day.
Luckily for me, as I stood dumbfounded in the busy parking lot, teetering on the brink of the trap trying to suck me in, I had one of those rare revelations we sometimes have: you know, a flash of light and a single thought that cut through the fog and lit up the sky with clarity.
For that one great, shining moment, I saw the answer and I understood my life.
What was it that clicked?
In the millisecond just before I fell into the trap, I was able to pause and ask myself: What is really going on here? Why does it have to be like this?
It was in that moment that I took control.
Right then I understood that the “Brain Injury Trap” wasn’t something that happened to me. The truth was this: I had brought the trap on myself. Yes, me. I did’t have the parking lot or the cars or my brain injury to blame, although that is very convenient. The trap was about to spring on me because I doubted myself; and the trap was like quicksand: the more I struggled and fought back, the harder it was to escape.
The Brain Injury Trap
In that moment I saw that I needed to do two things:
I needed to come to terms with the idea that due to my brain injury, I may, at times, forget where I park my car, and that was ok. That sort of thing will happen from time to time because I don’t have a ton of control over how my memory works.
Secondly, coming to terms with this would help me accept “lil-ol’-me” and stop me from beating myself up. It would also allow me to deal with situations constructively instead of using them as a reason to get pissed at myself.
I saw that I needed to exercise control over my mind. Contrary to what I might think, it really wasn’t the “forgetting” that was the issue. It wasn’t the “Forgetting” that made me a bad person. I made myself into a bad person by thinking I shouldn’t be forgetting and by beating myself up and judging myself.
Making myself into a bad person springs the “Brain Injury Trap” on me.
Avoiding the Trap
So how do I avoid falling into the “Brain Injury Trap”: the beat down I give myself, as well as the terrible lack of confidence I have when I feel I can do nothing right?
We want avoid the trap and reach the goal of having that shining moment of clarity and trust in ourselves, like I had the day I lost my car, last as long as possible. We must begin the process by accepting who we our. That will enable us to think objectively about the situation, and we can move on from there, using our brains in a proactive and objective way.
If I feel the trap coming on, I try to focus on things outside of myself. I try to turn myself into a problem solver rather than a problem maker, and the way I do this is by thinking about what I am not doing. I find that when I fall into the trap it is usually because I become very focused and create new problems by doing things over and over again and expecting things to be different; for example, I walk up and down the same aisle in the parking lot looking for my car because I think I must have walked by it.
These are the times I need to think expansively; think outside of myself so I can be more objective and not get caught up in doubting myself. Often the solution is very simple and I just have to give myself the room to find it.
For the last forty three years, since my car crash and month long coma, I have essentially been performing one big balancing act. Over this time I have learned what it takes to maintain my balance on the brain injury high wire; balancing what I used to be, what I was becoming, what I thought I was and my new reality in order to build a life that works.
I will be balancing for the rest of my life, balancing on a straight and narrow line so I can continue to live my life and move forward.
I have learned that staying balanced requires that I remain focused on the big picture and not get caught up in momentary wishes and desires, dreams of what could have been, or on day to day events. I can’t let myself get either too low or get too excited. I have to just be the way I am.
I would love to live my life being footloose and carefree, but “staying balanced” means that is not going to happen. Instead, I keep myself in check and in control, a little bound up and tense as I discover what I am now all about; always preparing for what could happen.
That is my reality since my accident; though I am positive and forward looking, I have a persistent tug in the back of my mind, a slight nagging feeling telling me that I have to be careful and watch out.
I have been fighting the brain injury wars; minute by minute and breath by breath, for a long time. For forty three years my life has been chock full of one battle or another, and it is draining, but it is important to stay vigilant as I stay in the present and in reality. I can’t let visions of what life used to be like bog me down. Nor can I dream beyond my capabilities.
I have now arrived at a place where I am at peace with my life, but that doesn’t mean I have won the war. I would never say I vanquished my brain injury. Rather, I will say I found a way to survive by maintaining my balance.
So that is what I take away from this: it’s all about balance and staying on the straight and narrow. Balancing on that fine line means we don’t get distracted, don’t let our minds wander, and we find a way to stay strong, to persevere and quietly stay confident; we do what we have to, not because we want to, but because it is our job.
Walking on that Line
Over the years, through my own experience and the experiences of others, I have come to appreciate the fragility of my life and I have learned about the strength I have. I marvel at my life; not just the idea that my life can change in an instant, but also the idea that I have the power to maintain balance and direct my life, even when I feel out-of-control. I have found the strength and power to fight distractions, stay focused, and set the tone and direction for my life; as well as the power to not let myself be affected by the things happening around me that could throw my balance off.
When I think back on my life, I credit my success on my ability to stay balanced; to stay away from the highs and lows, to not let the fear win, and to focus on the little things. I am still amazed that I didn’t snap; or that I didn’t lose my balance and fall off that cliff or lose my sanity. What kept me sane? I think back to certain situations, especially when I was alone with my wild thoughts, with my worries and my fears; balancing on that fine line between normal and crazy, and how I was saved by vigilance and balance.
Staying in control and balanced was a great goal to have.
I will never claim victory in the war with my brain injury; that would be egotistical and wrong. I have learned that it’s not necessary to yell, “I’ve won,” in order to be victorious. Claiming victory would disrupt my balance, and pumping my chest and yelling would interfere with the learning of important lessons one discovers when one is humble.
I have done the best I can and have built a life I can be proud of.
Yes. By learning to be balanced I have found what powers me, and it’s something we all have. I have found the power to block out distractions, fight my fears, stay focused and persevere. Being balanced may not be the most fun, but it is what has enabled me to get to “this place”.
As I said earlier, I know “this place” is fragile, and as good as I might feel right now, I have to remember all that stuff from my past is buried somewhere in me, waiting to jump out and make me unbalanced. I live right on the edge and I always will.
Those of us who have experienced a chronic injury or who have a chronic illness are used to being treated poorly by others.
You would think people would be more understanding, but apparently, that’s not the way it works.
We all have war stories. We can all testify to the number of times we have been insulted, demeaned, overlooked, made fun of, criticized or not believed; all because of the way we look, act or function. What makes it so confusing and frustrating is that even though we know we don’t deserve to be treated this way, we’re not sure how to correct this situation.
Typically, when an incident happens we react by getting confused, angry or defensive. We react emotionally; and that is understandable because being treated this way makes our blood boil. That helpless and frustrated feeling causes us to lose control and react impulsively, compounding the problem.
I knew that, in my case, controlling myself in these situations would be really hard but essential, and I knew I had to find a way. I saw that how I responded in the moment, in my frustration or anger, was probably not going to educate anyone or make me feel better about myself.
Something else important I saw was that, although what was said was directed at me, it really wasn’t about me. Maybe what was said was about some idea this person had in his or her head about people like me, or was said because something bad was going on in his or her life and it was making them frustrated or mean. Maybe their words had nothing to do with me.
So, what do we do?
There is no quick comeback or witty response we can make that will make us feel better or magically change another person’s attitude. Probably, nothing we do in the moment will help them see us for who we really are. So, instead of getting defensive or yelling or arguing, we should try to look for an answer that is within us; something we have control over.
We can start by calling these incidents what they really are: abuse. Abuse is never about the person being abused.
Dictionary.com defines abuse as: “bad or improper treatment; maltreatment.”
Bad or improper treatment can come from many sources and appear in many ways. Bad or improper treatment is uncalled for, emotionally damaging, and it stops us from living our lives. This abusive treatment hits us at our core; minimizing what we have struggled through and what we continue to struggle with.
If we all start by understanding that this kind of treatment is abusive and wrong and that it isn’t really about us, maybe we can find a way to deal with it. Maybe, accepting it for what it is, and giving it a name, will enable us to find our strength and deal with it better so that all of us survivors feel in control of our lives.
While verbal or emotional abuse is never justified and is not acceptable, we need to understand that we cannot change the abusive behavior of others by reacting to what is said. Instead, we have to take care of ourselves by learning how to deal with the situation internally and not responding to the words.
This is tough.
We want to respond. I know I did. I wanted to defend myself and fight back, but every time I did that I lost some of my strength and my dignity.
By dignity, I am referring to how you carry yourself in the world. In order to maintain my own dignity I tried to stay above the battle, and not get sucked into a war of words or an argument I couldn’t win. When I reacted impulsively and defended myself, I put myself in a no-win situation, where I could not teach anyone or make them understand , and I didn’t make things any better. I saw that even though I was supposedly defending myself, I really was giving up my dignity and my strength
So, I did my best not to react, and I tried my hardest not to take those words personally. I decided to maintain my strength and dignity by treating the other person better than they were treating me, even though it might hurt. By trying to be magnanimous and not falling into their abusive trap, I could maintain my strength and power, and I could walk away with my head high.
Even though you may be hurting inside, you can be proud of the person you are, and you will be hurting less than if you had engaged in some kind of verbal battle which you can’t win. By doing this your power and strength can grow, as well as the ability to feel good about yourself, and you can be proud of the person you are; regardless of what anyone else says.