April Fool's

 

            April Fool's day is very stressful for me. It is hard enough to follow what people are saying. Oftentimes I find myself stretching to grasp where people are coming from when the say something to me. Very often things don't quite make sense or seem right.

            And then you get a day where people are purposely trying to catch one another off their guard.

"Did you hear we're supposed to get a foot of snow today?"

"Really!?"

"April Fools!"

            Ordinarily that's just good fun, but when a person with a brain injury is the victim it can be quite mean. Everybody feels like a fool when they fall for something like that, and the joker feels quite clever to have put one over on somebody. But it is a painful reminder to a person with a brain injury that they have problems with processing information. Sure, it can happen to anybody, that's the spirit of the April Fools holiday, but for a person with a brain injury everyday seems like that and to have a day that is specifically meant to do that fills them with dread.

            So, if you don't have a brain injury, imagine this; What if every day was like April Fool's Day? What if every conversation you were in had the potential of ending in a "Gotcha!" Imagine how that would fill your day with trepidation. You have to admit that it would get quite tiresome. On April first it is hard for anyone to keep up their guard, sooner or later somebody is going to yell, "April Fool's!" and they will be caught. If it happens too often it gets very tiresome very quickly.

            That's what brain injury is like every day. Except people aren't even trying to pull one over on you, it just feels like it. They might as well yell, April Fool's life!"

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.

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.

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.