Anywhere is Walking Distance if you have the Time

Samuel Johnson said that a little ease is the ruin of great men. This is a fact of nature. Nature strives to be efficient, the most return for the least effort. When one is struggling to survive it is the most sensible path to follow.

Fast forward out of the Neolithic and such hard scrabble existence was not part of my life growing up in the twentieth century. I was not rich, but white middle-class was close enough. I had learned to get by on minimum effort.

When I awoke out of a coma with a severe brain injury everything had changed. I had to learn to walk, talk, read and write, basically everything, all over again. Only this time everything was harder. Much harder. Nothing came easy. I found myself at the proverbial crossroads. Do I give up and accept my lot, or do I push on?

The choice may seem obvious when you see where I am today. I've been happily married for over 25 years. I have worked satisfactorily for 23 years in a factory and have now retired to pursue more fulfilling work as a wedding officiant and writer/speaker. I have a wide circle of friends and an extensive list of awards and accolades. In a word, I have thrived.

When I was in the hospital I had no idea what brain injury recovery involved or how long it would take (essentially a lifetime). Had I foreseen what would be required I would have blanched and quailed. In fact, it was really about two years later, when I reached a plateau, that I became clinically depressed. It was then that I realized that I had to accept that I wasn't going to breeze through my recovery like a wunderkind and that I was going to be “brain injured” forever.

That was when I decided I didn't want to live the rest of my life half lived. I did not want to live a half-life. I wanted to live a full life. This is the time when many would say that they “pulled themselves up by their own bootstraps.” If anyone thinks that’s possible, I want you to reach down right now and pull with all your might. Yeah, it can’t be done. If anyone tells me that’s what they have done, I eye them suspiciously.

The first help I needed was with my depression, which took a few months of therapy and about a year of anti-depressants. The second thing I needed was a support structure; friends and family who believed in me and supported me. Then, with all that in place, I was ready to do the (seemingly) impossible.

I had an overwhelming list of issues and deficits. I chose the one that bothered me most, thinking that if I could at least do that I could maybe keep on going. For me that was walking and being in good shape. I had to have the energy to climb the mountains before me.

I started walking every day. Soon I was running a little bit of the way, kind of a lope, really. My balance and partial paralysis (left side) made running difficult. I kept it up and ten years later I ran a ten mile race in 92 minutes.

A couple years after my accident I saw a video tape of myself at my birthday party. I was shocked at how poorly I spoke! I had always been well spoken and I was not aware that this was no longer the case. This had to change.

I remembered in German class in school how good it felt to leave the class and be able to switch back to English where I could pronounce things easily and that finding the words I wanted to say was easy and effortless. I wanted that feeling again, so I started studying German, not to learn the language, as my memory issues made that a quixotic quest, but to make English seem easier. I was cross training for speech! Eventually, I switched to Finnish because that language is really difficult for English speakers to pronounce. After a few years of studying Finnish for about 15 minutes a day people began telling me I didn’t sound like I had a problem speaking.

Speech has never become easy for me, not like it once was. I still slur and get confused when I am tired (basically, by evening), but for a part of each day I can speak well.

The thing was, absolutely everything was hard to do. Since everything was hard it didn’t matter what was on my plate, it was a challenge. Nothing was too hard. I had learned to walk, I had learned to speak. I could do anything if I just put it in a routine and chiseled away at it. This is the secret to my success. Much of that time didn't feel like thriving, it is when I look back that I can say, “I have thrived.”

"You Disappear" a book review

For a bit of thematic synchronicity, this review is here but not here. If you scroll over and highlight the blocks of text the review will appear. Not my original intent, but that's how it worked out and at the suggestion of friends, I'm keeping it.

Christian Jungersen set out to overcome a number of literary challenges that few other authors would have attempted, and with You Disappear he deftly handles them them brilliantly. First, he writes a book from the perspective of a convincing female main character. Second, he writes on a suite of subjects that require an intimate understanding of broad range of current research, namely brain trauma and it's many psychological aberrations, which is saturated in enigmas with feintly understood ramifications. Third, from the bowels of deeply conflicting social, medical, and political issues he must wrest forth a lively and entertaining story. In each instance he has unequivocally succeeded.

I have read many accounts of brain injury recovery in the last twenty-five years since my own severe brain trauma. The accounts of the slow and heartbreaking recovery from brain injury are at best tedious and draining to read. Jungersen has crafted a story that is a page turner. Among the plodding metronome of brain injury recovery he has woven a symphony of plot twists that are as unexpected as they are believable. Quiet moments of beauty and gentle humor mix with the character Mia's discovery of what it means to be brain injured. Her fugues of hope and despair culminate in a resolution that is as satisfying and complete as it is unexpected.

There are many villains and many heroes and they exchange places within each character. Each of the main characters is a fully realized believable person that changes and grows throughout the story. So many other fictional stories of brain trauma focus on long term memory loss and little else, those are easy stories to write, even though such amnesia is incredibly rare. Jungersen, on the other hand, tells an engaging story that embraces the full spectrum of brain injury symptomatic sequelae by unpeeling the onion of mystery and misconception, rather than just listing the symptoms like ingredients. I found myself crying, "Yes, yes, yes! That's exactly it!"

Finally, as a reader with letters in literature, I was also enthralled by the sophistication the work demonstrated in its employment of a narrator that may be, or may not be, reliable. The confidence the reader places in the narrative vehicle can subtly alter the interpretation of the events as they are related. The mind wants to place black hats on the bad guys and white hats on the good guys, but such verity is elusive. The story, like brain injury itself, is different for every individual.

Jungersen has set a new standard for excellence.

Brain Injured, Brain Damaged?

It used to be, years ago, that those who had disabilities or were different in some way, were categorized and named in ways that were insensitive, if not downright cruel and hurtful. Gimp, cripple, harelip, lung (for TB sufferers), and many more terms too improper to bother printing. Fortunately, that was then and this is now.

            These days there are forums and other vehicles to discuss how these individuals would like to be called. In these modern days we have an avenue to make it known how we would like to be referred to in public. The internet allows for many voices to be heard. It is important that those affected get involved or the terms chosen are still liable to be inappropriate or offend.

            The latest best term for those have suffered a brain injury is "person with a brain injury." This is preferable to 'brain injured person' because the emphasis should be on the person, not the condition. The popular term "survivor" has problems because it is too general. People survive a lot of things, someone whose cancer is in remission is also called a survivor. We also need to avoid creating an overly technical term like neurophysiometrically compromised, we don't want to obfuscate brain injury the way I just did with this sentence, by using a word like obfuscate.

            I've been giving the term "brain damaged" some thought. Although "brain damaged" is technically accurate, it implies a permanent state, which of course it most emphatically should not be viewed as. And yet at the same time, brain injury is forever. I'm not ever going to be "not brain injured." Perhaps it is more accurate to say that "brain injury" is an experience, "brain damaged" is a state. The two are not incompatible, yet they are apples and oranges.

            Similarly, imagine if you had a broken leg. Strictly speaking you are "leg damaged." Yet, no one ever says that. Some still have an occasional limp that they will refer to as "an old leg injury from a car accident." Maybe next time when I have trouble word finding or following directions I'll explain it by saying "My old brain injury is acting up again."

            The phrase "person with a brain injury" is more descriptive of an experience than a condition. When a person's injury is relatively new they may justifiably resist this label as their intention is to re-cover from it. That is why they go to re-hab. If they are lucky, they may re-gain their former pre-injured state of being. That is a really cool thing, if it happens to be your lot you lucky duck. For the rest of us the journey is different. Once you experience something that changes your life you can never go back and "un-experience" it. Just like you can never un-mix the chocolate powder you just mixed into your milk to make hot cocoa.

            Nobody that has a brain injury wants to have another. Although statistically, if you have a brain injury, you are much more likely to suffer another, that is not from any personal desire. However, those who have lived through something like that tend to feel they are better for having made it. Basic training in the military is something that is challenging and unpleasant, and yet anyone who has gone through it will be proud of the fact they did it.

            Which leads me to the final conclusion for which I'm proud, inwardly, for having gone through what I have gone through. Other things, even if they are more difficult to do now because of my brain injury, I don't shy from doing. I am not a better person because of my brain injury, but I am because of what I've done in spite of my having a brain injury. I wouldn't choose to be this way, but as best as I can remember, no one ever asked. The fact is, I suffered a severe brain injury in 1989. Ever since then I have been crawling and struggling, fighting and groaning for every inch, to get to where I am today. And I smile, sometimes I smile through my tears, but I smile. I am here, and that is my victory.

The Infinite Strength of Compassion

            Caregivers often say that they wish they could switch places with the victims. They often feel like there is not enough they can do to really help the victim of a Traumatic Brain Injury, they feel as if all their effort is for naught. Conversely, I am at times thankful that the accident happened to me and not my wife. I couldn't bear to see her with a brain injury and I know I would be tormented by the desire to have had it happen to me and not her.

            So that is the attitude I take. I choose to believe that this accident was meant for her and I said, "No, let it be me." Immediately the question of why this happened to me is clear. Rather than feeling sorry for myself, I stand proud and strong. No longer am I the victim of a terrible fate; shouldering a burden that I shouldn't have to. I have metaphysically lifted the heavy load carried by another and made it my own. I have found the infinite strength of compassion.

            Another, perhaps better way to think of this, is not to imagine a single person you know, rather think of the probability of somebody getting a brain injury. There are going to be a certain amount of brain injuries suffered by a certain amount of people. It has to happen to somebody. Am I so cavalier as to say it should have happened to someone else? Of course not! As terrible as brain injury is, I would never wish it on another. So if I were to wish it didn't happen to me, it would be like I am wishing it had happened to someone else.

            My wish has come true. Someone was going to suffer a brain injury and I said, "No, let it be me."

Digesting Grief

Samuel Johnson, the eighteenth century lexicographer, considered by some to be the greatest English mind of his time, made a very astute observation on grief. He said “While grief is fresh, every attempt to divert only irritates. You must wait ‘til grief be digested, and then amusement will dissipate the remains of it.”

Those of us with brain injuries know this very well. The last thing we want, or need to hear, is one of those trite phrases which we all have heard like, “Well, you’re lucky to be alive” or “You think you’ve got it bad…” or worst of all “I know how you feel.” These genuine attempts at soothing our nerves come from the feeling that they need to say something; something positive and uplifting. As though we’d just turn our heads and say, “My God, you’re right! What business do I have to grieve? Thank you!” and then we’d go walking away whistling Zippety Dooh Dah. Of course, our friends and family members are only trying to offer solace; we certainly don’t need berate them. My point is that people don’t have any generally accepted and useful way of responding to grief.

The most helpful thing for them to do is to acknowledge your grief and share it with you as best they can. As Nietzsche observed, “sharing joy increases it, and sharing grief decreases it.” Unfortunately, very few people know of Doctor Johnson’s quote and few spend their time pondering how to respond to tragedy which is why Nietzsche’s observation is so sagacious.

What all this is leading up to is the fact that the only path past grief is to digest it. We need to accept our situation as bad and just feel it. Trying to ignore it or look at the bright side is not going to let it pass, nor is farming it out and trying to figure out a solution by rolling it over again and again in our minds.

In most situations, one can only grieve for so long and our natural human response is to tire of the grief and move on. It is at that point that the bright words and encouragement, the numerous offered diversions can help us to finally get over it.

The tough part about brain injury is that you can’t put it behind you. Yeah, if it were going to be over tomorrow we’d be through grieving soon enough, but there it is; every day the same as before. It is similar to when somebody has a loved one who remains in a coma, they can’t grieve their passing because they haven’t passed, and yet they aren’t really here either, so they are stuck in between, waiting.

That’s where I was, and would still be, waiting to be better before I could move on. I would always be waiting to get better. I was like the person who says, “I’ll be happy as soon as I win the lottery.” I had made this agreement to be happy once I met an unlikely, if not impossible, condition. Ultimately, I decided that was not how I was going to live my life, waiting for the day I would wake up and not be brain injured anymore.

That was the first day I began living again after my accident.

It's Always A Balancing Act

   Don't see me as "different," but understand I have a brain injury.

   Treat me as you would anyone else; like me, even love me, I have the same basic needs, being human, as anyone else.

   Of course, people can't understand what it is like to have a brain injury. No, not even close. Brain injury has so many profound and different effects that it would take a long time and effort to come to some sort of appreciation and people do have other things to do, like eat, work, and sleep.

   So I have to make the effort, as unfair as it is, I am the one that is different. I must be the one to reach out. It is as if I were the only one who spoke my language, it is not everyone else's job to learn my language, but it is my job to learn speak to everyone else. After all, they have plenty of people to speak to without speaking to me. I however, need to speak to someone.

   I don't want people to associate with me just because they have to, that's what counselors and therapists are for. I want folks to be my friends because that's what they want most from me.

   I have to do what I can to be of value to them. People will be my friend if they like who they are when they are with me. They will like who they are around me if they feel like I like them for who they are, not just what they can do for me.

   This is sometimes hard to focus on. My primary goal is to find friends because I need them. However, if that is the attitude I hold foremost in my mind I will push good people away. People can easily detect needy grasping types of folks, and they will rightfully avoid them. I need to smile and ask them how they are doing, how their day is going.

   There are so many memes, quotes, and moral platitudes about how friendship is about being there, being strong for the other person, and offering them unconditional acceptance and love. Yes, that is all part of it.        But it is what comes after the first part of friendship, the part where people enjoy each other’s company and have an enjoyable time in their presence.

   It is enjoyable to be around people who genuinely like you.

   If I focus on liking people and taking real delight in their world, their comings and goings, their pet projects, their family and friends, then I find that they enjoy my company as well. If they are quality people they will respond in kind without being asked. If I find they are not quality people then I can simply move on. No big drama is needed, no final closure. I just let them slip away as I meet other people.

   Meeting people is a numbers game. Hang out in public spaces, be friendly warm and open. I say this like it is a simple prescription, but it is not. For most of us it is hard to open up to strangers. I may write well, but when it comes to extemporaneous speech, small talk to strangers, I find it very difficult and often I become tongue tied. Through all my pitfalls and hang ups I have managed to find good friends over the years in spite of myself.

   I am trying something new with this article. I am not weaving “because I am brain injured” into every sentence. Still, if it makes it seem more pertinent to you, go ahead and sprinkle the phrase liberally throughout. I find that as much as brain injury separates me from others, it doesn’t separate me as much as I feel it does. When I say I have a bad memory, everybody responds that they have a bad memory too.              Rather than snap back and tell them they have no idea what it really means to have a bad memory, I just smile and use the moment to build a bridge to another human. I commiserate, usually with a wry laugh. I look at them and say, “It sure adds a special quality to the day, doesn’t it?” I invite them in, I don’t push them away.

   I write this because it helps me to organize and focus my identity. It helps me formalize what it means to be me. I strongly recommend that others put their thoughts into written words. I often imagine myself doing or saying things, but when I write these things down they become much more real. Good behaviors and practices don’t just float around in my mind, dissipating with the next breeze of thought; by writing them down they gain structure and mass. If I think of my thoughts as a building I am constructing, the act of writing is the critical diagonal piece that forms the triangle that gives stability to the whole structure.

Mom's Dreams

Mom’s Dreams

 

            My mom is great, I love my mom. I mean C’mon, who doesn’t love their mom? Here you can insert all the clichés that everyone says about their mom, and they all apply to my mom. And like most people, I really don’t believe I deserved all she sacrificed and gave for me.

One of the things I love about my mom is she has always been a dreamer. It’s like she and my stepfather were these old vaudeville actors and they had this tired old bit, talking about their dreams, that they trotted out every show like it was fresh and new. All you could really do is watch the show and smile and nod and be as sincerely interested as you could fake being.

My mom is almost seventy-five years old and you know what she did this spring? She planted an orchard! A pecan orchard or something. She’s imagining in a few years she will stroll along the orchard lanes with a basket harvesting pecans, or whatever she’s growing in her orchard. In five years she’ll be almost eighty! But that’s my mom.

I was in junior high when she married my step-father. They are a match made in heaven. No truly, they are. There is no way that two people who both live on dreams should live in the real world. This mundane world has no place for them. They keep toiling on life’s lower rungs, but they’re happy, very happy. Just up around the next bend the rainbow is going to open up and cast its gold their way.

Like I say, I was in junior high when I first heard their dreams, and I believed them, every word. By the time I was sixteen I was beginning to wonder when this was all supposed to happen. By the time I was eighteen I knew it was never ever going to happen. They didn’t have the business sense to make a million dollars, so they had to rely on dreams instead. For most this would be a poor trade, but it worked for them.

I think deep down they didn’t want the dreams to come true, that wasn’t what their dreams were for. They understood the joy was in the wanting, not the possessing, and they were rich in want. Usually, folks burn out on the wanting and give up their dreaming. Not my folks, not my mom. Wants were her wants. Her dreams never stopped feeding her.

My wife and I are more pragmatic. My wife is much more pragmatic. I just accepted that that was how my mom operated, but it would just drive my wife up the wall. “How can they be so silly?” As if there was an answer why puppies and kitties were so cute. They just are.

So when the time came, when I was lying in a coma in the hospital, and the doctors were advising my family to start looking into long term care facilities, that I saw the value in my mom’s dreams. My young fiancé had a white knuckle grip on the hope that the nightmare would end and I would be okay. Everybody, absolutely everybody, was advising her that she should make a quiet exit. No one believed I would be anything more than a vegetable. In fact, vegetable was too optimistic, I was destined to be parsley, simply brushed aside as a useless annoyance in the meal of life.

Except my mom. As I lay dying, “Mike is going to be alright. You watch, he’ll come through this better than ever.” And my then fiancé, now my wife, always the pragmatic practical one, chose that one time to believe my mom’s dream talk--and that one single solitary time my mom’s dream was spot on. If she has lived her whole life on dreams and scant else, just so that she could be the one to say I’d be okay that one time, and give Linda a foundation of hope to build her own dream on, then I say humbly, thank you, mom.