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.

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.

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.

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.

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.

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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.

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.