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.

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.

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.

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!”

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.