Brain Injury Death Game

Immediately after my injury the paramedics were unsure if I would survive. My few memories of being in the ICU I believed I shared the room with many wounded soldiers. Months later when we moved into a different home I sensed ghosts and dealt with them for a month. We worked out an agreement.

Yeah, a brain injury is a weird place to wake up to. As we try to explain how much things have changed it's truly beyond explanation. The rules change. Our entire being has moved into a new dimension.

I have entered into periods of suicidal thought. I have entered into a desire to fight and swear. I have jabbered my nights through dreams like great novels or frightening tales were being laid out before me.

It weirdly seems as though the Spirit of Death's attention was drawn by any almost there experience. As though it believes that it drew a good card from the deck of our life. They say that a cat has nine lives. How many do we have? The lack of skipping and singing my life through hints that my nine lives have shortened. But my mind does not want to work like that. I spread my awareness across today and away from yesterday and tomorrow. This type of awareness of thought is due to my days of meditation. Do I still meditate?

Huh?

It seems like a "pick something" game. For cognitive injury you reach in and choose. How many?

For physical. For psychological. Not sure how each bag fills up but once a survivor you do find others who picked similar to you. Some? Oh, shit. Depressing and sad and glad where I am. Only through comparison I guess. Not that I'm complacent with my picks. In my struggle for the surface for much breathable air, what if I were locked inside myself in a long term care facility?

No. This is not a good time. If I met the Spirit of Death  face to face,I have maintained my desire to never bow.

I challenge.

Brain Battery loss

What many TBI survivors experience is the battery of the brain running low. As we reach a level of improvement we find periods of strength. Fatigue is still present but through care giving and support and many types of therapy we do begin to find our feet under us return. Yes, we are different. Life and our reaction to it is a foreign world.

As survivors we know well the experience of three steps forward and two steps back. Even two steps forward and four back. It is difficult, to say the least. We can also tell of moving forward (?) and feeling perhaps more confident. It resembles riding a block of ice through and ice flow. When the water gets rough what we're riding on gets slippery. Hanging on is hard.

Today, I awoke like I took bad mescaline and woke up in some weird tent in a hard to get my bearings community. It brought me back to the early days of hospital release. Emotionally my fear and tears floated just below the surface. My fatigue was similar to losing my IQ. Imbalance and dizziness returned. My neck was tight and hurt. A feeling of isolation was present. The day's end is present. I napped this afternoon and it felt like five minutes, not ninety minutes. Hope felt lessened.

I hope to sleep very late tomorrow.

Brain Injury / effort

A couple of adventurous twelve year old boys, Rick and I tried to cross the expansive marsh in mid-winter. An impossible summer cross due to deep holes of water and mud. In the winter the holes froze. With the water rising and falling it was impossible to have confidence in crossing the ice between the grass humps and ill defined islands. It appeared dangerous. Scary. Unsure. The cross was one step at a time. There was no turning back.

Our lives are almost solely based on effort. We look to achieve, to gain or lose something we dislike. We live our lives in an effort looking for change. More money, love, better things, lose weight. Effort is ongoing. We define ourselves by wanting or desiring change.

Having survived a Traumatic Brain Injury we use ongoing effort seeking change. With effort we seek who we were. With effort we look to diminish our suffering from our list of cognitive, physical and psychological changes.

No similarity between surviving a brain injury and crossing the mid-winter marsh. Or is there?

TBI change is difficult. The level of change we participate and suffer from is as versatile as being born. Where we are born. Where we live. What we have available. What we have for insurance. The level of help that is available for us. Which is radically different for us all. How do we survive?

Based on experience, on learning, on observing, I find that slowing things down helps. When we live today and like breathing become aware that yesterday is yesterday. Tomorrow has not yet arrived. TBI works like an enemy. We can learn by observing our labeled enemy. As we seek and work at improving the beat down of TBI I observe and have seen that slowing down is helpful.

Yes! Work hard! But accept today as it is. It is! Our wanting to return to where we no longer are is natural but it is not as natural as nature. It is mind. It IS difficult. Accepting may as TBI survivors use a beneficial medication. Use it! It may lead us towards assistance in finding this comforting tribe/family or a good day.

Do you experience things differently? Is my view too radical?

Let's talk.

Different is well, Different!

Having worked in positions whereby I gave direction and encouragement and help set the path, much has not changed. It's my misjudgment because I sometimes drag it from where it was into our world of living with Brain Injury.

Those who have worked with me or for me or as clients or children is a formative position. In TBI there are similarities drawn from narratives and physician's conclusion but we are all different people. I can share and hope that something may be helpful but that is your call and not mine. I do hope to encourage yet this is based on my path and what I have seen and experience.

Cognitive skills are different from what we had confidence in. Physical abilities have also gone awry. Psychological steadiness is much like vinegar and oil. It needs to be shaken to be mixed which is never peaceful and quickly separates. As I stated before it's as if our needle has lost its groove.We're trying to find the old groove with balance, steady music and an absence of skipping or rejecting the whole album which we loved and enjoyed.

But is not change natural? The only constant is change. If we spend time of mind fighting change,does it avail? Suffering is suffering and it is a natural extension of life itself. It's not fun being harnessed by our injury. My new level of anxiety and depression and imbalance and pain and confusion and memory loss and etc, etc, etc... due to my head injury. It is unfair and judgmental of me to say such things?

I will be attending Adult Daycare soon. I couldn't drive for the first six months of my injury (10/2014) and I've undergone much therapy. Things are ongoing and not done. Thinking beyond the day adds to what?

Consistent Inconsistency

I've used a badly sprained ankle as an example many times. Your injury is such that when you're in pain and lose your place in the line up for a while you implement suggested measures and work on bringing down inflammation and stay off your feet. Over an extended period of time it begins to feel better and you limp around taking it easy. Slowly you find that your shoe is allowed back on the foot of the sprain and with continued soaking and pain medication you reach a point of it becoming workable. In time, you feel normal and finally reach a period where you're okay. The sprain is forgotten.

Having a traumatic brain injury makes the rules are completely different. Thinking, feeling and physical issues change as cards do in a card game. We see an Ace in the game played and the deck no longer holds it. The game continues as another shuffle is made. At some point in the game the Ace reappears.

Your dizziness and/or imbalance disappears. As does your anxiety or sleeping problems. Your word search or other portions of memory improve. The list goes on. And on. With a sprained ankle, once you reach a point of advance, you dismiss that portion of your injury. Having a TBI, an issue gone resembles the card game. It is re-dealt. Many times over as in a long poker game. This does not mean that things are left without hope. Like a poker game the cards can change but the time and game is a gamble. We never know what hurdle we'll overcome or when it will occur or when it is over.

In my experience some positive changes appear permanent. Some linger and roll like waves. High, low, and sometimes an unexpected current. It is important that you keep track. Keep a journal or pay close attention. It's also important to name without emotion. Use awareness to keep score. Not as one might in a game but as you would in creating something. In building, playing Jenga or playing Lincoln logs, it is foolish to knock it all down and walk away. Perhaps it's like painting a picture. It's juvenile to toss paint all over the canvas and try to walk home. We need to work on things. We need to avoid seeking those who suffer as we do only for the point of complaining.

Sometimes letting it all go is a way of gaining ground. Sitting with my buddy and have a Spring clean up bonfire made things seem normal. We've done it many times before. No expectations and light conversation. I stated that it was fun and good. It made me feel so normal. He agreed. Just two buds doing an old thing together. Find those friends who are from the days of old and acceptance. It is very healing,

The Depression Game

We can likely agree that depression travels the world and lights upon as many as it can. I could discuss depression on many levels based on multiple thoughts but my primary reason is about you and me.

Depression is not exactly the same for all of us. And because we are designed differently and our traumatic brain injuries are not all identical, depression treatment can also vary. I have observed that many years of meditation brought me into a position of being observational without judgement.. Meditation helps one come to an analogy point of one watching clouds drift from horizon to horizon. We watch the clouds on a blue sky. If watching our thoughts come and go as we do the clouds we are not under the tutorial of our thinking. With practice, cloudy or raining or winter creates watching and non-judgmental awareness.

The result of having a TBI is we loose our groove. Like the needle on a record we begin to skip or fly off the record entirely. Then we often search for the same record or some way of placing the needle back in the groove.

When I awaken from a negative or a restful sleep getting up to greet the day is usually a battle. The depressive drive desires that I sit and wallow and want escape more than I want today. In the depression game I seek to do the opposite. Like being tired and worn out I know that I must continue my path and not lie down at the end of the field. Difficult, but in time one learns that this is a winning move. Not easy.

How do you continue on?

An invisible disability, no limp or staggering slur / et al, those who have survived a TBI, experience their transformation like ghosts. Cognitive issues such as memory loss and difficulty and/or struggling to focus, read or listen hides itself well. Whereas I now most resemble (at least in my view and experience) a ninety five year old home bound man. Yes, I'm better than I was but improvement comes exceedingly slow. And how far can I go?

My excessive reading, staying strong, experiencing the peace of mind through a quiet mind. Sleeping well, ability to socialize and make decisive decisions. Laughingly, I need someone to visit me. Take me out. Feed me. As one who knew Tai Chi, Qigong, the benefit of meditation, many methods of exercise, I'm an old hermit in the woods. But there has been improvement. I read a little. Can't play the guitar too well. I walk regularly but not without difficulty. Pain meds and muscle relaxants in addition to anxiety and depression meds with excessive insulin resistance..... Hemingway calls!

After my ICU and Rehab hospital stay I underwent physical and cognitive therapy locally and later with the magnificent Spaulding Rehab. I saw a neuropsychologist. And Disability states after me having an interesting and versatile career that I can never hold any position once held. But there must be something I can do.

Huh?

I'm continuing. I am using this Blogger vehicle as a journal. I hope that a few TBI survivors may also gain hope. Perhaps exchange ideas.

My first use of the phrase, "Going Hemingway" came about as I worked hard at writing a book. Ernest had said, "There is nothing to writing. All you do is sit down at a typewriter (or computer) and bleed." After seventy five percent completion, my "Cluster B" personality wife destroyed my computer and my back up CD's. There it lies today.

Life goes on....

Life Suffering Regret

Going Hemingway....

What do I suggest?

Living among all that is present in this world is never easy. Adding to our measure of awareness our own personal suffering , adding learning and experience and involvement in the world's suffering, creates different things for different people.

I am often reminded through the versatile life experience of Ernest Hemingway that a well lived life does not always lead to fulfillment and a restful slip into death. Death. Which is where we are all headed. My parent's interesting lives were perhaps not known by them that it was such. Yet we are born and will one day die. Doesn't this hint that life is for learning? It cannot be a period of time where we hang on as if it will accomplish or not accomplish something. Hemingway did not hang on. I enjoy and learn and relish where he had gone and what he had accomplished as well as his great works of literature. How did his life end in suicide?

Entering my sixth decade of life (Ernest died at age 61) with a lengthy trail of injury and family crisis and divorce, I experienced a Traumatic Brain Injury. I joke by stating that the Irish in me pushed me down. I brought a friend a bottle of her favorite to wish her well in job hunting. A bottle of good Gin on sale. The Irish in me never drinks it. That night in October 2014, I did drink it and left a house absent of an outside light or hand railings. I left the top and landed on my head. The right side cracked open as the brain traveled at an enormous speed to the left side of my head. My brain injury arose from a left hemisphere and some left frontal damage. Add to that the crumbling of the inner ear bones leaving me with 2% hearing on the left side. Your cognitive life shifts. Your physical strength and ability shifts. Your psychological sphere is out of balance. The norm is no more.

Common to others in the plight of TBI and the often additional PTSD suicide beckons. I understand that Hemingway and others in his family suffered from Hemochromatosis. He also suffered from many injuries through life. It is also noted that he drank heavily. There have been five suicides within the Hemingway family over four generations. As we TBI survivors have worked to push on I have heard words similar to that of Ernest's brother. "Like a Samurai who felt dishonored by the word, or deed of another, Ernest felt his own body had betrayed him."

I've been invited to join Facebook support groups for TBI & PTSD and have also looked into community support groups. As I recently told a TBI friend, we all feel as though we're in a hard race. If I begin to tire and kneel and perhaps vomit it is encouraging to feel the support of another who stops and consoles and places a hand on my back. But as my head raises and I look at the race pushing on around me I see where everyone is just better or worse than me. It's a rough crowd seeing the disabled all trying to push forward. What are we doing? Where are we going? For me, it is better to go the park and watch the world go by. Watch the dogs run, the kids play.

Going Hemingway? I know through having the cognitive, physical and psychological thought of feeling dishonored by the word or deed of another. I have lived it. And I also have felt that my body has more than once betrayed me. I have thought of suicide.

I am hoping and planning to explore the way of going on. Of learning from life. Of sharing my pathway.

Share with me!