Sunday, December 16, 2012

No one survives a brain injury


 
                I was reading a really excellent account of a man's recovery from a severe brain injury he suffered in a bike accident, written by his wife. I find it interesting to read accounts by care-givers as it is the other side of the coin from my experience and it allows me to gain insights that I otherwise might miss. The book is called Learning by Accident and it is written by Rosemary Rawlins.

                At one point she is mentioning hearing the phrase, which we all have heard so many times, "He's lucky to have survived!" I won't go into her own thoughts about that as that is her story, but it got me thinking about that.  When somebody says to me that I am lucky to have survived I usually nod and agree, because that is polite, but it starts this internal dialogue:

Am I?

I did die, yet here I am.

I wouldn't say I almost died, I'd say I almost lived.

I had a near-life experience.

It was like I had a stare-down with Death and he blinked. If I ever write an autobiography I'll probably call it, Death Blinked.

Death's Scythe missed me by that much! Said in my best Maxwell Smart impersonation.

And of course, there is my old favorite, "Lucky sure sucks!"

                The point is, I'm not who I was. I won't say I'm better or I'm worse, those are relative terms and don't really address the issue that I am concerned with in this case. I was baptized by a gravel hauling Mack truck of a St. Peter while I was wearing an F-150 pick-up truck robe. It washed away my past and left me spiritually cleansed. I am different, I am not who I was.

                Nevertheless, I bear a striking resemblance to my former self. I impersonate him all the time. I feel like an intruder who has snuck in and lives in his house and sleeps with his wife. Back in 1989 when this happened I felt like I was trying to impersonate this guy who had a dream life. A beautiful house, a more beautiful wife who loved him unconditionally, a good job and good friends; and it was all mine, if I could just keep the charade going. However, that was turning out to be a trick that made learning to walk seem easy (learning to walk is my description of the hardest thing I ever had to do).

                I live a double life, but with a twist on the conventional meaning. This double life is not lived simultaneously, but rather in serial. Instead of trying to conceal one life lived from another, I'm trying to join two lives, one after the other, seamlessly. That is a fiction that cannot be done. The only way I have found to cope is to acknowledge the past as the past, and move on. The A team that was running my life has been knocked out of the game. In its place I am now the B squad; the second string. The game-my life-still goes on.  The odds makers have reset the numbers. I can still do really well, only now it always has a qualifier; I can do really well...considering.

Please return to paragraph two and read it again.

Saturday, November 10, 2012

The Forty Seven Percent Rule


There is an old joke that goes, "Forty-seven percent of all statistics are meaningless." I've always enjoyed the sub textual humor of that. Now when somebody, like my employer for instance, wants to know my exact limitations I will tell them, with respect to a certain task that I happen to find difficult because of my brain injury, I can do that forty-seven percent of the time.

I look them square in the eye and say it with all earnest, as though I have kept a record with carefully calculated results, and I am recalling the exact number from memory, which is in and of itself ludicrous, as I have a brain injury. It is also ludicrous to try and describe my very real limitations from brain injury in black and white. So I tell them I can do it forty-seven percent of the time.

This is a very specific number to illustrate the absurdity of the question. First I start with the basic fifty percent "sometimes I can" "Sometimes I can't." Then I trend downward for Murphy's law. This is the law that says when it is really important I probably won't be able to do it, but still almost even. Forty-nine and forty-eight are too easy round up to fifty so I have to dip a little lower. This leaves forty-seven because at forty-six and below I start sounding like I mostly can't do something, and that's not the way I look at the world.

            On days that I'm feeling immortal I go for the polar opposite 'fifty-three percent,' which says that I can usually get it right, but since this whole discussion usually comes up when I'm trying to illustrate that I do, in fact, have a brain injury, that does, in fact, hamper my day, I usually go with the downward slope to forty-seven.

Wednesday, September 19, 2012

Learning to See



I see the world differently now. I see it with “TBI Vision.” I’m not talking about my double vision, or the difficulty my brain has in processing the information my eyes are taking in. Those are very real and serious limitations. What I am talking about is the way I see things now.

All too often, ordinary people get caught up in what they see. They place too much emphasis on what is plainly right before their eyes. If something doesn’t square with the facts then it must not be so. “A is A” as Aristotle said. “Ding an Sich” (a thing in itself) as Kant said. Time and again it is repeated that we gain knowledge of our world through direct observation. None of these beliefs allow for brain injury, where that information is confused, obfuscated, or just plain missed.

This would seem to imply that a brain-injured person is less able to operate effectively in the world. In many cases this is just not so. Blind people can operate effectively, as we know. In fact, many blind people who get their sight are unhappy with what they see; the “real world” is not a world they are comfortable in.

This is an insight into what I mean when I say that I am glad for my TBI and would not wish it away even if I could. I see so much more with my heart and I would not want to give that up. I use to see the world in very cold and hostile terms. Now I see it in warmer friendlier terms. Has the world changed? No, I have. Instead of only seeing what is, I also see what can be.

It was a long and arduous process to come to this knowing. Now that I have it I would not give it up. This is what I mean when I say that I am glad to have sustained a severe TBI. All the pressure is off. No one expects me to be the best, or the smartest, or the richest. All I have to do is be the best me I can be. I can be a good friend, a good volunteer, and a valued person.

I live my life with passion. I care. I laugh. I love. All of these are things that I gain by sharing them; they make me a wealthy soul. Because I want these things in my life (and who does not), I give them away. They rebound back to me. I like myself when I am this way, when I like myself I find others like me also. I ask no one for compassion, joy, or love. I simply give it unconditionally and I find my own cup overflowing.

This is how I choose to see the world; this is my “TBI vision.”  
 
That was my original essay written some time ago, today I would add that, Like Voltaire's Candide,  when I am harangued by folks who wish me to dive into this cause or that problem, this hangup or that philosohy, I say to them, "That is all very well, but lets tend to our garden." Our garden is a metaphor for our life, the only thing worth growing in it is love and respect. If we tend to those two crops we will have a full life.

Monday, August 20, 2012

Consuming the Rage

When I was in the hospital, when the time had passed and it finally occurred to me just what I had lost, That was when the rage theatened to consume me.

Gone, it was all gone. Everything that had made up what I considered the best part of me, everything that was my reason for living, was just gone. I remained, seemingly only to bear witness to the fact that I was gone.

Betrayed! I was betrayed by life and fate. I was berthed and burdened by fate. I became my rage and I became my betrayal. The hatred blackened my heart until I could feel it no more. And then I reached a point where I had absolutely no capacity for any more hatred.

My hatred had burned white hot as it concentrated within me. My whole universe of anger focused to a point so intense that it exploded out from my very core. It washed over me and it flooded my hospital room. It knocked everything off the tables and buried them against the wall. Then it burned the paint off the wall and exploded out the window. I was left laying still and empty and weak in my bed.

As suddenly as it exploded, it was gone. Empty, bereft, and alone, I lay there, and I surrendered. I could not take it anymore. I had no more capacity for hatred. It was like my great lungs of hatred were emptied and I drew in a deep sweet breath of grace.

If forgave myself, then I could forgive fate, and then I could forgive everyone. What else could I do?

In surrender, I had found Epic Grace.

Tuesday, August 14, 2012

Brain Injury and Marriage



            Relationships and marriage can be difficult for anybody, which means with brain injury they can be exceptionally tough. I was engaged to be married at the time of my accident in January of 1989. After I came out of my coma we had to decide whether or not to continue with our June wedding as planned and risk forfeiting our deposits, or to put it off for another year.

            Against the advice of many, we decided to go for it. All my wife had to do was work full time, pay the bills, and plan a wedding for two hundred, as well as take care of me. I had to learn how to walk so I could make it down the aisle. In the end I did my part and my wife did hers.

            That was the easy part. Most relationships don’t make it past a brain injury. Brain injury can fundamentally alter who you are. A common lament in many troubled marriages is that one’s spouse is no longer the person one fell in love with. Brain injury pretty much assures that fact. After over 20 years of marriage I can give you some hints as to what you can expect.

                        If you marry a brain injured person you may feel like you have to do everything. You have to support the household because your spouse may not be able to earn a significant income. Fatigue is a major component of brain injury so you may have to do a lot of the work around the house and yard. Your spouse may no longer be able to do mechanical repairs or cook, and if they try do some of the things they could do before, it can have disastrous results. There are no clear boundaries, which means, you are perpetually walking on a mine field.

            At first, and for the foreseeable future, you are going to feel like you gained a child, not a spouse. No adult wants to be treated like a child, and no adult wants to admit they need to be treated like a child. Nevertheless, with brain injury that is a fact of life. A brain injury survivor needs to admit they need help and their spouse needs to admit that an adult is not going to enjoy being taken care of like a child. The lines of tension are set very taut and very ambiguous.

            On the off hand chance your marriage lasts long enough, there is yet another hurdle. Supposing a brain injury survivor gains the ability to function more or less like a competent adult, a process which can take years, the marriage must once again adjust to shifting roles. This doesn’t happen all at once either. Just like that troubled part of life we call adolescence, returning to the role of co-equal partner is an awkward process of fits and starts. All the boundaries can change and there is no set or certain rhythm along the way. One hopes that after everything else, the marriage can make this adjustment.

            At this point in my essay you are probably asking “is it worth it?” I will tell you in all honesty, probably not. I say this because I don’t want to fill anyone’s head with all sorts of unrealistic hopes. I don’t believe that soul mates are found, I believe they are made after years of effort. I believe one of the reasons so many marriages fail today is that we listen to all these love songs that place unrealistic expectations on a relationship in which things like fellowship and respect and good communication are just supposed to happen. The love song that I do believe in is one by RUSH called “Ghost of a Chance” and it starts out like this:

“I don’t believe in destiny or the guiding hand of fate

I don’t believe in forever or in love as a mystical state

I don’t believe in the stars or the planets or angels watching from above

But I believe there’s a ghost of a chance that we can find some one to love

And make it last”



I have a wonderful marriage; my wife and I are very much in love, but it hasn’t been easy and I certainly don’t want to say, “Hey, we did it, you can too!” For us it has been worth it, but it has meant a lot of pain and regret as well as happiness. It is possible; it’s just not easy; which can be said of marriage in general, only with brain injury it is more so.

Sunday, August 12, 2012

The First Time I Walked

Imagine my fiance, 25 and very beautiful, quick, curious, and playful. She was engaged to her soulmate and they were to be married in June. Her life was pregnant with possibility.

Then her soulmate was in a tragic accident. At first it didn't seem likely he'd live, then it was assumed if he ever came out of his coma he'd likely be in a very low functioning state, needing constant care, living in a nursing home for the rest of his life. His own family was telling her they'd understand if she left and got on with her life, in fact they were telling her to move on with her life. But she said, "no, that won't be necessary, Mike will get better."

As I lay there in my hospital bed, I couldn't believe that my child hood sweetheart was actually with me and planning to mary me. I felt more than a debt, I felt gratitude and thankfulness of the deepest most intimate kind. If I loved her I would be a partner to her, not a burden. The best way I could show her this was to walk down the aisle with her in June. It was February and I was still unable to walk without assistance or supports.

I decided that if I loved her, then I could walk. I made my walking a metaphor for my love. With each step being a metaphor for telling her, "I love you." I couldn't tell her with words, my speech was so poor at that point.

The day came, they took me down to the rehab room and wheeled me in front of the parallel bars. I stared at them trying to overcome my fear of failure. My therapist told me, "Give it a try, its okay if you can't." She began to say we could try again tomorrow, but I cut her off."

"No it is not!" I mumbled, feeling quite pathetic. I reached for the bars and I tried gallantly to pull myself up. I didn't know it would seem so impossible, but I thought of my fiance, I felt my love, I winced and I strained and with shakey uncertain legs I stood. Everyone in the therapy room cheered. I paused, gathered my strength and set my intentions. I shifted my wait to my left leg, the one that felt heavy with water. I tried raising my right leg to bring it forward. I panicked and set it quickly back down. Sweat was on my forehead and my teeth were clenched tightly. I set my intentions. I tried again, I felt like a skyscraper leaning in the wind, I thought of a sailing ship foundering in a gale, I closed my eyes on the inhale and opened them as I exhaled and took a step.

"I love you." The inner monologue resonated from my heart. I had done it! I had taken my first step.

Now I was in a jam. I had one foot forward and felt very off balance. Now everybody was watching, no cheers, just stunned silence. I rocked back and forth from foot to foot, trying to find a stable platform. There was no avail. Fear gripped me, I clenched my teeth as my breath coarsed sharp and short between them. I leaned forward and dragged my left foot ahead.

"I...Love....You! I had done it, I had walked! I wanted to raise both my hands over my head but no sooner had I tried then I started to fall and I brought my hands down and grabbed the rails tightly. White knuckle grip. I leaned on one hand with my hip and bowed my head while I raised the other arm in the air. Victory! And I breathed.

Monday, July 9, 2012

Loss of Ability


It is a pleasure to do what you're good at. I, like many folks, can't think of anything more boring than accounting, but I have a good friend who enjoys accounting. I asked her how she can enjoy such detailed precise work, it must get really boring. She told me that what she enjoys about it isn't necessarily the work itself, although being so exacting fits in with her character, it is the fact that she is very good at it.

That made sense. I can really see that, because where I work, which is a factory, although the work is repetitive and boring, what people like is doing a job well. They like that others appreciate their effort. Part of my job involves spending part of each day working with a machine which is very fussy. No one likes running it and so they gave it to me to do and I stuck with it and learned all its foibles and tricks. Now I take immense pride in being the person who operates that machine. I like that part of my job.

If I bring this concept to brain injury it becomes immediately obvious what is so depressing for myself and others - I can no longer do things very well. I am not very good at anything I used to be good at and I don't seem to be able to do much of anything else. I used to be able to do many things well; I used to be able to do a few things very well. Now I'm doing handstands because I can tie my shoes. It is a major adjustment.

Sure I'm grateful for what I have, but with that gratitude comes an appreciation for what I have lost, and any loss stings and the greater the loss, the greater the sting.

Saturday, June 16, 2012

The Hero Returns


I have died, yet here I am. I am not talking about any near death experience. There was no light to go to, there was no comforting voice welcoming me or telling me to go back. No, I died. The person driving my pick-up truck was killed in the accident. The body that they kept "alive" at the hospital is inhabited by a different person.

            In the classic Hero tale, a person dies or leaves, returns, and is changed. Sometimes this change is subtle, sometimes it is quite profound, but it is quite clear that they are different and not quite of this world in the same sense as everyone else.

            It is also never a trip taken lightly and the passing of the person is mourned, the returning Hero is often times not really accepted because they are so different yet eerily similar.

            That is how I would describe myself after my accident, eerily similar. I am most definitely not the same. With Brain Injury, the twist on the classic Hero's tale is that the new incarnation is not initially superior, far from it! The so called Hero is, in fact, quite dependent and needy. And so, with fits and starts, I began to construct a new me. I did not try and reconstruct the old me, that was not an option. This took a couple of years to realize and come to terms with.

            It was in the act of reconstructing myself that I realized two important things. The first was that I could not be what I was because that would require this new person to not have a brain injury; the notion of "recovery" became quixotic. The second was that I had an opportunity, both rare and unheralded, to become a better person.

            Enter the Hero.

            I had no idea what the Hero would be like. Piece by piece and hurdle by hurdle I reconstructed my identity. I succeeded at things I would never have attempted before, achievements where the effort did not seem commensurate with the result. Things that I would have considered not worth trying. Things that I would have called too hard. Accomplishments where the result, no matter how gratifying, paled in comparison to the willingness to persevere.

            In this process I become not the end but the means to the end. I trade a life for the living of a life. I am this or I am that becomes simply, I am.  The power of 'I am' opens a door to a myriad of bright possibilities. I was static, I am dynamic. I can't always succeed, but I can always try. These are the guiding principles of the Hero.

Tuesday, June 12, 2012

Cars Like Brains

How many times have I had to explain to people that I am tired? More accurately, how many times have I had to explain why I'm tired or why I can't do something because it makes me too tired? For me this inveriably occurrs not after an episode of physical exertion, people get that, but at other times when it is mental or cognitive exertion that has worn me out.

For me, cognitively taxing activities are those that require my focused concentration, either requiring my mental attention on a specific task, or more commonly, requiring fine motor skills. Sometimes it is a combination, with results not unlike playing a video game at a really challenging level for a long time, leaving one dazed and confused, even disoriented.

The simplest way for me to explain this to somebody is to liken it to a car's engine. When it is in tune it is efficient. As the engine gets out of tune it loses that efficiency. It is hard to start. Moreover, it uses much more fuel to go the same speed as other cars. Eventually, if it is not tuned up it completely quits and it will not run anymore

My brain is the same way. It is very out of tune. If I try and do the same work as other people, my brain uses many more resources to accomplish similar tasks and the result is less. If I don't listen to it, it gets more tired, fatigues at a higher rate, and even shuts down.

One key difference is that a car can just get a tune up, a brain cannot. My brain can heal and recover, but it will never run. Actualkly, it is a lot like the vehicle I was driving when I was t-boned by a semi-truck. They totalled it. It could never be fixed to run like it did before the accident. I lived, but like my truck's engine, my brain will never run like it used to. It runs differently and less efficiently.

I don't dwell on that fact, but I do acknowledge it. I have to acknowledge it because that is the only way I can make my peace with it. Until I acknowledged that my brain was damaged and it would never run like it ran before I could not begin the monumental effort of trying to achieve my new personal best.

Sunday, June 3, 2012

My New Superpowers


            I have acquired some new superpowers. Like most superpowers, I acquired them as a result of a mishap. In my case it was not exposure to radiation and or a chemical spill, it was not even X-rays from space or exposure to a meteorite; it was the result of being hit by a semi-truck.

            As is typical, it took a while for me to discover and learn to use my superpowers. Just like in the comics I did not welcome my new superpowers at first. Just like in the comics I hid them and was ashamed of them. I did not want to admit that I was "different."

            My first superpower is that of "Radical Acceptance" or as I call it "Epic Grace." It started when I first accepted my injury, fault became immaterial because it didn't change anything. Once I forgave myself I could forgive the world. Once I forgave the world I could forgive anyone and anything.

            My second superpower is "Unique Perspective." I have died and yet I live. Nothing really seems like a big deal anymore. I have lost everything, anything I have now is a bonus, each day is extra, tacked on beyond what I would have had. I no longer fear death.

            My third superpower is "Indomitable Will." After my brain injury everything became very difficult. There was no easy way to do something. If everything is hard then it doesn't matter what I try, anything can be done. If I can learn to walk, I can run a marathon. If I can learn to talk, I can learn a new language. It is all the same.

            So with this trio of Superpowers I make my way through the day. It not only makes my life easier, it makes life easier for all those around me. These superpowers are special too, as they can only be used for good; no matter what my intent, the result is always positive.

Thursday, May 31, 2012

The Sleeper Awakens


Everyone is capable of much more than regular life asks of him or her. This is proved when you watch the news and they talk about some accident or disaster and the “heroes” that rise up out of the rank and file of every day life to deal with the traumatic event. Rarely are these people who have any claim to fame or greatness other than they were just there and they did what had to be done.

            This is not to belittle what they accomplish. In fact, it is a solemn salute to the great things that are regularly achieved by those who are faced with an overwhelming hurdle.

My brain injury was the bitterest pill I ever had to swallow. I always felt inwardly that I could handle anything that life dished out, as long as I had my mind to rely on. I somehow felt that if my mind were damaged I wouldn’t want to be saved. Coincidentally, that’s where I got hit, right in the mind.

Much to my surprise, even that didn’t make me give up. A part of me that I had never had to rely on was there when I needed it. In mystical terms this is that time when “the sleeper awakens.” That is that inner strength you never knew you had. This is Clark Kent diving into a phone booth and emerging as superman to save the day. This is that part of you that, when you find yourself trembling on a rocky ledge about to fall, screams “No!” and pulls you back. This is that part of you that finds the courage to turn around and walk the razor’s edge, face the fire, or just get out of bed.

Brain injury is your opportunity to be great. Most people live whole lives waiting for something to happen to them to make them great. Lucky us. We’ve been pre-selected for greatness. Hey, nobody said being great was easy. I am great-full. If I had anymore greatness I’d be depressed. My plate of great is overflowing. No more greatness for me thank you, I’ll leave some for the next guy.

Seriously, it’s all a matter of perspective. This is just one way to look at brain injury. It’s important to note that you aren’t great because you’ve had a brain injury, but you can be great because of what you do in reaction to your brain injury.

Most of us spend some time wallowing around in denial and this is natural. It takes awhile to accept that this really happened and you are not just having a bad dream.

 A sign that you’ve accepted your brain injury is when you first take responsibility for your injury. I’m not saying it is your fault; blame is irrelevant. Being responsible means accepting that recovery is no one else’s job more than yours. You have to decide that you want to get better. You have to decide that you want it bad enough to work at it. Being willing to work at it means that you aren’t going to be hung up on the end result. It means that you want recovery so bad that you are willing to work at it even though you have little or no success. There’s no point in giving up because you can’t go back.

I can’t guarantee you’ll recover successfully. I can guarantee that you will grow. It’s not reaching the destination that makes you a better person; it’s the journey. If we have an advantage over ordinary folks it is that we are on a seemingly perpetual journey that’s all uphill. To quote Bill Murray in “Stripes,” “Talk about massive potential for growth, I am the acorn that becomes the mighty oak!”

Tuesday, May 1, 2012

Asking is not Begging


When to ask for help, when to accept help, and when to say ‘no’ to help. These are cross-roads we are all faced with in the path of life.

            The child within us would always like to get help. When I was very young I was watching a movie that was taking place in the 1930’s. A man’s family was hungry and cold, it was Christmas and there were no toys for the children. Help was offered and he turned it down. The narrator explained that he was too proud to accept charity.

            I did not understand this. I reasoned that if you wanted something and it was offered to you, then you should take it. Issues can be so simple to a child. They can seem simple because a child does not have the experience of life that teaches how to balance living in society with being an individual, which teaches there are costs other than monetary that have to be considered.

            These issues are seldom black and white, in spite of what we hear every day during an election year. Be this as it may, what are the options to consider when we, as TBI sufferers, are offered or need help?

            Pride, or as it is known in the modern vernacular, self-worth, is a valuable commodity. It does not injure your pride to ask for help when you need it. People are only too happy to assist most of the time, especially with small projects that are not overly time consuming. Asking is not begging. Helping another human being is its own reward. That is as long as it is voluntary. I would cross the line if I went from simply asking for assistance to demanding it. If I demand help I degrade myself as well as the person I’m asking. If I say “you have to help me because…” I am obligating them to assist me. If they agree to assist me they become my servant.

            I am explaining all this to illustrate that there is nothing wrong with asking for assistance when you need it. Some people have trouble asking for help because it seems like they are begging or that they are showing some personal failure because they are not an island unto themselves. Refusing to ask for help when it is obviously necessary only makes you and others miserable. The “and others” is a critical point here. I can’t impress how foolish you look to others when you obviously could use some assistance and you just won’t ask for it or allow them to help.

            However, getting help can be like taking a drug. It is fine if you need it, but it can easily be abused. It can become easier to get help than to do something yourself. It is easy to drift into the habit of always getting assistance. In the end this only makes you weaker. In order to maintain some semblance of self worth you begin to deceive yourself into thinking you need all the help you take and that you have it harder than others.

            This leads to self-loathing, when you loath yourself you can only loath others. This is no way to live your life.

            The magic of life is that you have absolute authority over so much of your world. You divide things into what you need and what you want. You decide when enough is enough.

Thursday, April 26, 2012

My New Superpowers


I have acquired some new superpowers. Like most superpowers, I acquired them as a result of a mishap. In my case, it was not exposure to radiation and or a chemical spill, it was not even X-rays from space or exposure to a meteorite; it was the result of being hit by a semi-truck.
 As is typical, it took a while for me to discover and learn to use my superpowers. Just like in the comics I did not welcome my new superpowers at first. Just like in the comics I hid them and was ashamed of them. I did not want to admit that I was "different."
 My first superpower is that of "Radical Acceptance" or as I call it "Epic Grace." It started when I first accepted my injury, fault became immaterial because it didn't change anything. Once I forgave myself I could forgive the world. Once I forgave the world I could forgive anyone and anything.
My second superpower is "Unique Perspective." I have died and yet I live. Nothing really seems like a big deal anymore. I have lost everything, anything I have now is a bonus, each day is extra, tacked on beyond what I would have had. I no longer fear death.
My third superpower is "Indomitable Will." After my brain injury everything became very difficult. There was no easy way to do something. If everything is hard then it doesn't matter what I try, anything can be done. If I can learn to walk, I can run a marathon. If I can learn to talk, I can learn a new language. It is all the same.
So with this trio of Superpowers I make my way through the day. It not only makes my life easier, it makes life easier for all those around me. These superpowers are special too, as they can only be used for good; no matter what my intent, the result is always positive.

Friday, April 20, 2012

Why I Don't like Motivational Speakers


I really don't like motivational speakers because, when I see one of them dancing about the lectern and spouting trite adages with a silly grin, I hear one of two things, and these are really the only two messages they can possibly give me; one is that they obviously have no idea what I've been through or they wouldn't be up there smiling and dancing in mockery of me, or two, the alternative, which is that they do know what I'm going through, they have had it even tougher than I have, and look at how much better they are than me, as they have beat their demon and I am being consumed by mine.

I have learned that when I tell someone my story or even discuss a small part of it, if they tell me something vapid and pithy like, "Life is like a box of chocolates..." I just roll my eyes and shake my head. They obviously have no idea. Once again I feel alone and misunderstood. That is mere sympathy and it is very condescending. Not unlike when someone says, "I must have a brain injury too, I'd forget my head if it wasn't attached." I don't hold it against them, they're just trying to say something nice. If however, I share something and they shake their head and say something like, "Wow, that's nasty!" I feel much better for having shared, because they obviously have heard me and appreciate what I'm going through.

I also don't mean to say that what the motivational speakers are saying is nonsense, far from it! Only that it doesn't help for someone else to tell me to be strong, because that message needs to come from within.

This is my motivational message: Recovering from brain injury is tough, it is often without reward, and frequently you are alone and unappreciated. When I hear THAT acknowledgement from someone else, I feel better. That renews my strength to carry on.

Sunday, April 1, 2012

Fairness


The other day I was talking to the HR rep at work as we were once again trying to find a place, a role, a job that I could perform successfully. Some jobs were discussed that I could perform, but they were held by other people and so they were not available. She explained to me that it would not be fair to those people to take their job and give it to me. I nodded, I knew she was right, I understood that we must be fair; but inside I was seething, because there was no attention given to fairness when I was hurt, but now I have to be fair. Fairness had become the end of my rainbow, always out of reach. When I got home I wrote this:


Fairness


They didn't save my life, they made me not dead. I am alive, but I have lost my life. I am still me, but everything that I was is gone. I may look like I have lost nothing, but how I look is not how I feel.


I have lost my dearest competencies. I have lost my most cherished abilities. I have lost my certainty and with it my confidence. I have only the most tenuous grasp of reality; the reality I have does not seem to be the reality shared by others.


And you presume to lecture me on fairness. Oh please, really? You are going to tell me that what I'm asking for is not fair? Do you really want to go there? When did fairness crop into this situation? When I came to in the hospital and I could not speak, walk, or remember anything, there was no fairness. When I struggled for days, which became weeks, which became months, which became years, there was no fairness. When I fought to put any kind of meaning in my life, a life where friends slipped away, where job opportunities slipped away, where possibility burned off like the morning fog, there was no fairness.

To me, fairness is a luxury so rare and fleeting its occurrence is mere coincidence. Fairness is a naive childish notion, like unicorns and leprechauns, a trite conjuration of innocence to be properly discarded with adulthood. Maybe fairness has weight and meaning for you, but it has none for me.

Saturday, March 31, 2012

Free Kindle e-reader for PC

If you don't have a Kindle, here is the url for the free kindle e-reader. I know a lot of people don't like the though of reading whole books on computer, but since mine is a collection of essays to be read on occasion, this actually is a pretty good alternative.
http://www.amazon.com/gp/feature.html/ref=kcp_pc_mkt_lnd?docId=1000426311

Thursday, March 15, 2012

Routine Reality


Routine is a constant reference as to when and where I am. With brain injury one realizes just how fragile our awareness of place and time really is. I can be at the mall with my wife and be looking at something while she walks away. I will look up and suddenly nothing is as I suspected and I will feel this sudden panic as I try to reorient myself, try to find some clue that will tell me where I am and when I am. Not just what time it is, or just what day it is, but what year is it? How old am I? A split second of panic until I regain my perspective.

Routine allows me to compensate for my lack of initiative. I may not notice that the house needs vacuuming, but I know that on Mondays I vacuum. It is good to make lists for many things, but inserting something into my routine allows me to do a number of tasks that would overwhelm me if I saw them all on a list. Routine allows me to be a more effective person.

Most people view routine as boring. “Boring as compared to what?” I ask. “Boring as compared to being confused and inactive?” I query. Variety is very important. Many people are distracted from accomplishing long-term goals because they want immediate variety. I get my variety long-term because routine keeps the distractions at bay. Day by day my routine may seem boring, but I’ve accomplished so very much in the last eleven years since my brain injury! These are things I would never have even considered doing before. In addition to doing all the tasks you might imagine in an ordinary life (I prefer “ordinary” to “normal”) I also run five miles several times a week, I read seventy pages a day, I ran for Lt. Governor in 1994 and 1998, I expect to get the Libertarian party’s nomination for Governor in 2002, I facilitate the Stillwater support group, I speak four languages besides English, and my writing has appeared in a few Libertarian publications as well as in the brain injury newsletter, I designed and built a teaching aid to show the effects of time distortion at relative speeds, I protested the stadium tax increase, and more.

I don’t list all that to brag. I’m certainly no genius and I sure don’t have limitless energy. It just really amazes me how much a person can do if you just put it into a routine and doggedly persist. I don’t question whether or not I want to do something on a daily basis, I just get up and do it. I face each day with child like wonder and boundless curiosity. Oh yes, and as always, I hone my will on adversity.


Thursday, March 8, 2012

Real Healing


            A reporter asked me recently, “How long did your recovery take?” My stock reply was that you never fully recover from brain injury, that most people see the lion’s share of recovery within the first two years. All of that is factual, but none of it is correct.

            It is like asking, “How long does it take to grow up?” Growing up is a process that never really ends. One does tend to develop in different ways as one gets older and at some point we consider ourselves “grown up.” However, you never really stop growing.

            The same is true for brain injury. There can be discrete measurable gains after brain injury that can be described as recovery, but beyond that there is the intangible of personal growth.

            Part of this personal growth I like to label healing. Healing is the act of reconstructing ourselves after the “loss of self” that is part of brain injury.

The first step is to accept that we have a brain injury. This is more than just acknowledging the fact that it happened. It is accepting the fact that you are not the person you were. Trying to be the person you were is living in the past. When you are truly ready to be who you are you are ready to move on.

The second step is to get over it. It is all too easy to try and hold on to the deficits of brain injury. It becomes so very much a part of who you are, that to move beyond it is like losing yourself all over again. Yes you have deficits, but you are you in spite of your deficits, and THAT is what makes you a better person.

The third step is to find value in the experience. It is restitution for the soul. Restitution is the act of putting right what is wrong. This is the true nature of healing. If you do not see your brain injury as valuable, then your brain injury has accomplished nothing. This is completely your choice. I found that my brain injury knocked me off my high horse and allowed me to become a more compassionate person. Compassion has unlocked riches I would have never received. My world is now larger and encompasses broader horizons than I would have ever imagined. We must all find that which has value to us. This will be different for everyone and is part of this fortune hunt called life that is far too fleet.


Saturday, March 3, 2012

On Being Dependent


One of the most difficult things about brain injury for me was the helplessness. I was not used to being taken care of. I was used to being independent and strong and letting others lean on me. After my accident it was always a constant battle, striving to recover and yet yielding to assistance when necessary. It was a balancing act and it was one I wasn’t very good at.

            Facilitating a support group gave me a whole new perspective. It allowed me to view my situation through the eyes of others. Listening to caregivers and victims sharing their feelings I was able to be on the outside looking in. For the first time I was able to imagine how my wife must feel and I was able to hear how I must sound to her. This new knowledge is one of the rewards that I have found in being a facilitator. My only regret is that it took me ten years to figure this out. 

            A brain injury is tough and it is overwhelming, one of the first things I was faced with was that many of the things that brought me joy were now beyond my reach. It was often easy to feel like there was nothing left to live for. I saw all my dreams shattered. I felt I had been cheated and I had lived my life to completion. As I often do in dark moments of despair I turned to “Illusions” by Richard Bach, my favorite book I paged through it looking for an answer and this is what I found:



Here is a test to see if your mission in life is over,

if you’re alive

it isn’t.

                                                                            

I’m just one person, but with over twnty years post TBI, I keep finding reasons to be here. Open your heart and touch a life, there is never a shortage of those who need someone to lend an ear.

At times I honestly felt there was nothing left to live for, but in saying so I was telling others that they are not worth living for. I can now imagine how that must have hurt. They were helping me because they loved me, not because they pitied me, which is the way I felt. I decided I must never esteem the love of others too lightly!

            I had always been the strong one. The one all others could lean on and draw from my seemingly inexhaustible reservoir of strength. Now it was time to accept that I had to be taken care of, and that I must yield the care giving responsibilities to others, especially those I had previously taken care of. The shoe was on the other foot! So, as much as I may not have liked this new arrangement, all the wishing in the world wouldn’t make it otherwise. I had to face reality.

            This didn’t mean I would stop trying. If anything, the way I feel should motivate me to do whatever is required to expedite my recovery. Until then I can accept help. All false independence does is make everyone miserable. The least I can do is be thankful, humble, and cherish the love I receive from others.

            This is how I have decided to view my world. This should make my path a little easier to traverse and I know it will make the lives of my caregivers more rewarding. We live for them as they live for us.

Wednesday, February 29, 2012

Meta-Cognition:Thinking about Thinking


              Recent studies have overturned the long held belief that as you get older your brain gets weaker and more inefficient. The brain does not get worse with age; bad habits erode the mind. New brain cells are constantly being grown in the hippocampus and the brain is always building new pathways.

  The brain is like a muscle. With use it will grow stronger. With disuse it will atrophy. Unlike many other organs of the body, it never wears out, but it does fade out from lack of stimulus. 

Many people find themselves trapped after brain injury. Trapped in a body with a brain that cannot do what it used to. So they sit and wait to get better. Unfortunately, that’s not how brain injury recovery works. Brain injury recovery is work. The work doesn’t have to be unpleasant, but it must be fairly consistent. It is only by dogged determination that limitations can be overcome.

A word about limitations: Limitations aren’t permanent. Limitations are markers that say how far you’ve gone in the past. They say nothing about the future except how much further you have left to go. View your limitations as the highest rung you’ve ever reached on a ladder. You can always try to go one rung higher.

At any point in your recovery you may not get any better. The Doctors really can’t give the families or the victims of brain injury any definite answers to the questions “How long till I get better?” and “Will I regain this or that ability?” They can not wave a magic wand or give you a magic drug that will make you whole again

Take control of your brain’s functions. Accept that your brain is an amazing organ and that you can make it better and stronger. How good and how strong is up to you. You can always improve, but there may be a point of diminishing returns. You must decide how you want to proceed.

Your brain can be very obedient. It will do what you ask of it. Program your brain to perform a certain task within a certain time limit. Tell yourself that you will complete a task within a certain (reasonable) time. You will be surprised at how much more you can accomplish. They have tested for this under laboratory conditions and it is a fact that if you give yourself a goal and a time limit the brain tends to work faster and more successfully.

            Acknowledge your limitations and devise techniques for working around them. Instead of saying “I can’t remember” try saying “I will remember when X happens.” Give yourself a command such as “When I park my car I will shut my lights off.” Visualize doing this. When my wife asks me to pick up certain items for her when I go shopping I visualize selecting the item when I get to that part of the store. This works for me provided she doesn’t ask for too many things and that I know where the item is so I can visualize it. With practice you can actually get quite proficient at this sort of thing. As always, start with baby steps. Success builds success.

                Visualization is a key that you can use to improve your brainpower. It is a tool that you can use to fight the failure mechanism that we all struggle with. When we tell ourselves “I must remember” it is usually with this nagging feeling that we will forget. When you visualize actually remembering to do something you over ride that failure impulse.

            So, you start by taking control of your brain’s functions. Your brain is very obedient and will respond to commands. This does take practice. Practice being successful at something. Acknowledge your limitations. Visualize yourself being successful.

            I am not talking about saving a drowning child, landing a crippled airplane, or curing a wasting disease. I’m talking about wearing matching socks, turning off the stove, and calling your mother on her birthday. We can be successful people.

Tuesday, February 28, 2012

A Memory Like All Others


What do you think these three people have in common?

1.      A man tees up a golf ball and hits it straight down the fairway. After waiting a few moments for his partner to hit, the man tees up his ball again, forgetting that he hit the first drive.

2.      A man puts his glasses down on the edge of a couch. Several minutes later he realizes that he can’t find the glasses, and spends half an hour searching his home before locating them.

3.      A man temporarily places a violin on the top of his car. Forgetting that he has done so, he drives off with the violin still perched on the top of the roof.



If you guessed that they are all men you have guessed correctly, but that is not my point. What else do they all have in common?

None of these people have a brain injury.

I have recently completed reading a book, by Daniel L. Schacter who is the chair of Harvard University’s Department of Psychology, titled “The Seven Sins of Memory – how the mind forgets and remembers.” In this book he outlines seven different ways the mind manages to forget. Seven different ways!

Of course, he makes many valid points and observations, but I was looking at more than just his observations and conclusions. I was trying to determine if there would be anything valuable for a brain injured person to learn from such a book.

After reading the dozens of accounts of people’s mnemonic shortcomings in the book, I was able to make one salient observation. Everyone has an imperfect memory; our memory may be more imperfect than most, but ordinary people are constantly hampered by memory failure.

I’m not going to say that we have nothing to complain about, because if it’s bad for other people, it is that much worse for us. What I am going to suggest is that there are definite ways we can work to improve our memories. If other people can do it, so can we. Our hurdles may be higher, and the road fraught with increased perils…So what else is new?

As always, the first step is attitude. In Illusions Richard Bach says, “if you argue your limitations, then sure enough they’re yours.” The mind is surprisingly obedient, if we tell ourselves we can’t do something then we can’t. If you first say that you can’t, you’re almost never wrong.

Unfortunately, the corollary is not true. If you believe you can do something, it doesn’t necessarily mean you can. I’m just saying, as a first step, you must believe you can succeed.

Tatiana Cooley, the 1999 national memory champion can remember thousands of numbers in a series as well as other memory feats. What she can not due is get through a day without post-it notes and a day planner. She is terribly absent-minded. The reasons for this are explained in Dr. Schacter’s book, but basically, there are two different kinds of memory at work here and one she is able to improve on and the other she sacrifices.

Imagine an ordinary person forgetting something, they probably will quickly dismiss it as just another memory failure in a long list of mnemonic shortcomings. If you or I forget something we say, “it’s my brain injury.”

The only people I have ever heard of who have had excellent memories are people who subsequently sustained a brain injury. Apparently, the best way to guard against a TBI is to have a bad memory to start with. I’m being facetious here, but I am making a point. We often remember our memory as being much better than it was. The logic of the last sentence is clear. Dr. Schacter calls this the sin of bias. This is what is normally called seeing the past through rose colored glasses. It is a natural condition of memory. Not surprisingly, it is that much more pronounced in a TBI survivor. We need to be easier on ourselves.

In summary let me say this. Our memories are worse than most people’s memories. Everyone has to use various compensatory strategies to make it through a day and it is more so for us. There are strategies to improve memory, though we have to realize that it is going to be harder for us, and we will accomplish less. Maybe this all seems dark and foreboding, the light to draw from what I am saying is that there is hope. Set realistic goals and expect to work hard, when you succeed you will be that much more rewarded. As Thomas Paine said, “That which we obtain too easily, we esteem to lightly.”

Monday, February 20, 2012

Learning to See


I see the world differently now. I see it with “TBI Vision.” I’m not talking about my double vision, or the difficulty my brain has in processing the information my eyes are taking in. Those are very real and serious limitations. What I am talking about is the way I see things now.

All too often, ordinary people get caught up in what they see. They place too much emphasis on what is plainly right before their eyes. If something doesn’t square with the facts then it must not be so. “A is A” as Aristotle said. “Ding an Sich” (a thing in itself) as Kant said. Time and again it is repeated that we gain knowledge of our world through direct observation. None of these beliefs allow for brain injury, where that information is confused, obfuscated, or just plain missed.

This would seem to imply that a brain-injured person is less able to operate effectively in the world. In many cases this is just not so. Blind people can operate effectively, as we know. In fact, many blind people who get their sight are unhappy with what they see; the “real world” is not a world they are comfortable in.

This is an insight into what I mean when I say that I am glad for my TBI and would not wish it away even if I could. I see so much more with my heart and I would not want to give that up. I use to see the world in very cold and hostile terms. Now I see it in warmer friendlier terms. Has the world changed? No, I have. Instead of only seeing what is, I also see what can be.

It was a long and arduous process to come to this knowing. Now that I have it I would not give it up. This is what I mean when I say that I am glad to have sustained a severe TBI. All the pressure is off. No one expects me to be the best, or the smartest, or the richest. All I have to do is be the best me I can be. I can be a good friend, a good volunteer, and a valued person.

I live my life with passion. I care. I laugh. I love. All of these are things that I gain by sharing them; they make me a wealthy soul. Because I want these things in my life (and who does not), I give them away. They rebound back to me. I like myself when I am this way, when I like myself I find others like me also. I ask no one for compassion, joy, or love. I simply give it unconditionally and I find my own cup overflowing.

This is how I choose to see the world; this is my “TBI vision.”  




Monday, February 13, 2012

Sense of Self


What is this “sense of self” that everyone is talking about? Your sense of self is that knowledge of what kind of person you are, how you feel and act, how you have developed over time, the roles you fill and the roles you play.

Your sense of self was turned off like a light bulb when you had your accident, when the light was turned back on the room had changed. It had become a shambles. It takes a long time to put it in order and it will never look the same. Who you are is a dynamic process. This sense, the personal experiences, are the sum of events over time. Permit yourself the time to become a whole new person.

How many times have you heard the phrase, “if I could do it all over again…” Well, now you can.

Brain injury is an opportunity to design yourself all over again. When you do something or behave in a way that is unsatisfactory you can tell yourself, “that wasn’t me, I’m better than that.” Saying it makes it so.

One thing that makes for a positive sense of self is a sense of accomplishment. Unlike many people, I get a real sense of accomplishment just from tying my shoes. In 1989 I had to re-learn how to do that. It was a lot of work, I still must work at it, but I’m getting better all the time. Now I only look back to see how far I’ve come!

Post-TBI everything is hard, so it makes little difference what I’m trying to do, whether it’s tying my shoes or learning another language. I hone my will on adversity. I started small and worked my way up. The nice thing about having no short term memory is that it rarely occurs to me how long I’ve been working at something. I just put it into my routine and work at it every day until I succeed.

            I believe you will find that success suits you.


On Being Well Liked


One thing we all need, not just TBI survivors, but everyone, is for people to like us. How come some people have lots of friends and others don’t. I will tell you what works for me. Many people will say, “Well of course you have lots of friends Mike, you’re so good looking and funny and smart, but what about everyone else?” Actually, I’m joking, nobody says that about me. So just why do I have so many friends?

            I have many friends because I like people. I’m not shy about it either. When I meet someone I am genuinely pleased to have made his or her acquaintance. When somebody I know walks in the room I am glad to see them, as if I was alone in the room until they showed up.

            In conversation, I try to talk about something I know they are interested in. If I don’t know what they are interested in I will try to notice what they are wearing and tell them I like it.

            The single most likeable thing about someone is how much he or she likes you. The important thing to note about that is that it gives you a lot of control over how others feel about you. The trick is to give others the benefit of the doubt. Assume that you have met your new best friend when you are introduced to someone. If you find out otherwise later you can just move on, no harm done.

            One piece of advice, avoid talking about yourself. Unless you are asked a question, talk about them. If you don’t know enough to talk about them then ask about them. If they ask about you, be polite and answer briefly. Save full disclosures for another time. If you want people to see past your brain injury, then you have to see past your brain injury. Here’s an example:

Them: So you have a brain injury?

You: Yes.

Them: So how did it happen, if you don’t mind me asking?

You: No, I don’t mind. I was in a motor vehicle accident.

Them: Are you all better now.

You: Actually, I still have quite a few problems.

Them: I bet its tough. I have a brother-in-law who fell off a platform at work…

You: How is he doing?

It’s usually the case that someone knows someone with a brain injury. Show concern for THAT person, are they getting the help they need, have they contacted the Brain Injury Association? When people ask about your injury they are usually just being polite, be polite and respond briefly. When you ask about someone they mention, you are just being polite, after all. This is how civil society works.

Good friendships with quality people take time and constant effort. If you wish to attract and keep quality people then you have to work at being a quality person yourself.

Monday, February 6, 2012

Giving Yourself Credit


One of the most common complaints about brain injury is that no one can “see” your disability.  We look fine and even among people who know we are brain injured we often find our disability is overlooked. Add to that the fact that so many have no idea what a brain injury is all about, and you’ve got a recipe for misunderstanding and alienation. This is one of the many reasons we are impatient for our complete recovery.

One of the most common complaints heard in any support group is frustration over the length of recovery. There is so much pain and so much hard work and so little reward. Day after day we face the same dull tasks, day after day we don’t seem to get better, and if we do improve they just raise the bar and we start over from square one. Its like being in training for the Olympics except that there is no gold medal, no adoring crowd, and no cheesy interviews from network personas in cheap suits.

There are many aspects to the outside world that we cannot change. Recovery is slow and difficult, but we can change our perspective.

That is what I decided to do. I was as bad as all the other people who would look at me and see no brain injury; who would see nothing amiss. I had to reevaluate my position; I was in such bad shape after my accident that I almost died. What I needed was a big gash or bruise on my head to remind my self that I was horribly injured. Some sort of mark that could visually remind me just how hurt I was. Since that was not to be, I just had to consider how far I had come. I had to realize just what a complicated piece of machinery the brain is. Skin can just scar over and the wound is healed. The brain doesn’t use scars. Scars are the body’s duct tape, tie wire, and Bondo, that can cover up a damaged chassis. Repairing a high performance engine will use none of those things and is a much a more involved and delicate process. If an engine is damaged severely enough, it may never run as well as it used to, I accept that. It was time to accept that my brain may never run as well as it used to.

Fortunately my heart can compensate for my brain. I believe this has made me a better person than I ever was before. As difficult as it is sometimes, I have to ignore what I’ve lost and focus on what I have gained.

Saturday, February 4, 2012

Boredom


My friend Carlos had a period during his adolescence when he didn’t have much to do. You know that age, to old for all the stuff you used to do, but not old enough to do all the things you wanted to do. Well, he came across a whole pile of rubber bands, an almost limitless supply. So he rolled one into a little ball and then he grabbed another one and wrapped it around the first one. That was so much fun and so rewarding that he selected one more rubber band and repeated the process. He did this whenever he had some spare time and wasn’t going anywhere for awhile. By the end of the summer he had a rubber band ball about the size of a basketball. He called his creation “Boredom.” Boredom became an institution to us. We took it wherever we went. That was twenty years ago, the last place I remember boredom was at college, in the Student Governing Board offices, where it was our constant companion.

            Even before I had left the hospital boredom had found me again. In my opinion, the hardest thing about brain injury is the boredom. Everyone finds being infirm to be boring, but brain injury lasts forever! If not forever, for an uncomfortably long time. Everyone with brain injury has memory problems, but everyone can still remember how much fun they used to have and how interesting their life was before their brain injury.

            It’s like the football player who is injured and told he will never play football again, except you were playing life and now it appears you will never play life again. What do you tell those well-meaning people who want to give you a kind word of support when they ask what’s wrong? Do you look at them straight on and say, “I’m bored.” In the work-a-day world where people are longing for some peace and quiet how do you convey the utter futility of your predicament? It’s like you’re waiting to get better, but that’s years away if even then.

            I do remember the first year after my accident, not in detail, but in general. I remember how bored I was. I still get bored, I think I will spend my life running from boredom. The difference between now and then is that now I’m not bored all the time. I have discovered a secret. The opposite of boredom is purpose. If you find a purpose to your life you will have a way to alleviate boredom. Purpose fills each day with opportunity and each moment with wonder. I actually find myself lamenting that there aren’t enough hours in the day!

            The tough part is actually finding a purpose. In my experience it is rarely found by sitting back and wondering what it might be, wishing upon a star. Usually, people are going through their life and this purpose just bites them on the nose. This isn’t much solace for those who are bored now, so what can a person do?

            I would look at volunteer opportunities. This is not to say that this is the best way to find your passion and purpose in life, but it does give you something to do until you find your place in the world.

            Remember to look inward. Before I was of much use to anyone I spent time improving myself. “Invest in yourself first,” a sage once told me. That is my mantra now, whenever I talk about brain injury to survivors I talk about ways that I found to improve myself after my accident, many of these techniques I have written about in these pages, but everyone is different and we all must chart our own course.

            Good luck and happy sailing.