Living With A Brain Injury – April 2010

No brain injury is the same no matter its cause and a brain injury is never a static thing. It’s role in your life changes and shifts for a range of reasons. It is one experience when you are rested and, in all likelihood, another experience when you are tired. In a state of fatigue the brain is not as able to compensate for the damage. Aging too impacts the role the injury plays.

As one who lives with a brain injury my responsibility  is to keep an eye on its role in my life and do my best to manage it. My injury is a result of being held up and shot in the head in 1984. There is one immoveable truth that stands tall in the face of this or any disability or disease for that matter. They d0 not define who we are unless we allow them too and the most certainly do not define our value in life.

My closest friend, Michael Sulsona, lost his legs in Vietnam and another good friend of mine, Jim Cesario, suffered a spinal cord injury. Both men use wheelchairs. Both also deal with people talking to them in very loud voices because for some odd reason people think if you use a wheelchair you’ve suffered hearing loss. Go figure. Both men, by the way, stand way taller in life than most people I know.

No matter the wounds of life,  you are not gone.

It seems to me one of the keys to improving quality of life is acceptance, your capacity to accept the reality that is you. This requires honesty. For me, I’ve accepted I am an alcoholic (I will be eight years sober this July 12) and I have accepted that a brain injury and PTSD are present in my life. By accepting the realities you face for what they are, you stay right sized and by keeping them right sized you do not lose you in the process.  That to me is the greatest discovery of all. No matter the wounds of life,  you are not gone.

There are still days my fear and anxiety stop me from getting out of the house, or drive me out of my backyard and back into the house, but even so, I am more than okay. On those days I am by no means a defeated being. I am surrounded by books and the house is filled with music and, of course, the bird feeders are filled with wondrous visitors.

Your most powerful weapon

No matter what you are facing in life, you are not gone. I can tell you too that honesty, which is the core fuel for one’s capacity to accept, is your most powerful weapon.

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Living with a Brain Injury: Them There First Hours

A few housekeeping things on the front end of this essay. First, no two brain injuries are exactly alike. Second, too many healthcare providers (and others) act as if they are alike and treat us as if they are alike and that does nothing by amplify the already formidable challenge of living life with a brain injury. Third, there are some similarities. One of them I will talk about here, is the fact that our relationship with our injuries changes over time. As we age, our physiology changes and we change.

Before I move on, let me say that the number one complaint I hear from survivors across my state and beyond is they are far too often treated like they are children. It’s true. I’ve witnessed it. Two facts to keep in mind: no one every suffered a brain injury and got younger, and no one ever suffered a brain injury and lost their individuality.  I was 30 when I got shot in the head and when I came to on the ground, damned if I wasn’t still 30 and, by the way, still Peter Kahrmann.

All of us who live with brain injuries face the task of learning how to recognize when the injury’s impact is present and then developing ways of managing that presence. Given that this presence changes, many injuries, for instance, are one experience when we are rested and another when we are fatigued, we are all, like everyone else on the planet, a work in progress.

Over the past months I have been relearning how to manage the first hours of my day. When I wake up in the morning I generally know the things I am supposed to do that day. Go to the store, make a phone call or two, write and answer some emails, get dog food, feed the dogs, go for a walk, work on the book, read, go to the market, and so forth.

Now, pretend for a moment, that everything I just mentioned represents a ball I want you to juggle without dropping. Not easy, perhaps impossible, which is exactly how I feel about being able to complete my day’s tasks when I wake up. Impossible! When I wake up and register the things I am supposed to do that day I am instantly overwhelmed, frightened, and positive I can do none of them. I can’t emotionally do the juggling and thus am unable to envision how on earth I will get anything done.

But there is good news. This early morning flooding is temporary. I have learned it takes my brain time to wake up and gather itself because, after being awake for a couple of hours, what felt impossible now feels very possible. And so, my early morning strategy is reminding myself that this too shall pass. So, I have my morning coffee, relax, read the news on the web, and wait for my brain to wake up.

Before I sign off here, a word to those in the healthcare field who work with us. If you don’t provide us with a non-judgmental environment that recognizes our individuality you will fail miserably in your stated desire to help us grow our lives. In fact, you will make the task of growing our lives and managing our injuries even harder. I know what I say here will make a difference to the many providers who truly do care. I also know what I say won’t make a damn bit of difference to the providers who don’t care. They’re out there too. I’ve seen’m.

A Remarkable Peace

I have lived with a brain injury for 25 years now. I am learning it all the time and it is moving all the time. Not physically moving as in location, but moving as in impact, influence. A brain injury, or, to unveil the truth with greater accuracy, brain damage, is never a fixed thing. Its daily role in life can be influenced by many things: fatigue, hunger, weather, sound, noise and so on. Its role changes with the passage of years too. As the body’s physiology changes, so does the impact of the injury.

In my view none of this is insurmountable, if you practice the art of acceptance.

Many if not most would agree that acceptance is the hardest of tasks. But, it is also, in so many ways, the most rewarding. Acceptance gets you off the starting line because once you’ve accepted the reality you’re in, you have freed yourself to manage it. Acceptance brings freedom and returns you to you. You get to realize you have a relationship with what you are experiencing; you get to realize that the light and value and ineffable wonder that really is you  is in no way diminished. You get to realize you are not defined by the life experiences that orbit around you,  experiences that include medical and emotional conditions, addictions, personal histories,  fears and worries along with financial stressors and memories. In other words, the all of what you experience. When you realize this you get to discover or re-discover  that you are the light of you, the nexus of you.  And when you accept  live the moment you are in, you are released into a sense of freedom, and with this freedom comes a remarkable peace.

Today fatigue is on me. I very much want  to read, but when I pick up a book that I have been loving, my brain injury gives me three or four lines before it says, Not now. And so it is not now. And that is okay. Were I to struggle with this truth, I would miss the beauty of this day, the magic of the clouds in the sky, and the clear fresh cleansing smell of fall drifting through my home. A smell that brings with it the joyous fragrance of a remarkable peace. I’d also miss the pleasure of writing to you.