“Hi my name is Luka and I’m a recovering “fill-in here words that bring least stigma”

Last night, I read from Rachel’s blog. It got me thinking about something that ultimately had more effect on the outcome of all my struggles- stigma. She describes two scenes. One is that of a person with a broken leg or arm. The patient is surrounded by friends or family who are signing the cast. The image I get includes laughing and talking, a discussion of how it happened, and the approximate date the cast can come off. There are some people from the team discussing that she will be missed and she is consoled in having to miss the second half of the season. When visiting hours are up, she asks for the remote and watches her favorite television show. The second scene speaks to someone with an injured brain or a disease of the mind. The image that I have is that of a person who sits staring ahead while hearing familiar voices whispering in the hall. People enter with very concerned looks but they focus on the dinner tray that has been barely touched. One tries to make light. “The hospital food looks really appetizing.” Then, the young man’s sister dares to get close. And she puts some nabisco peanut butter crackers on the night table.She acts in such a way that suggests that she’s been there before.  The others watch carefully. “What do you want me to tell the team?” “Should I tell them it’s asthma?” The patient responds, “you know Pat it doesn’t matter, it’s an adult league”. He doesn’t look towards her but she understands why. “yeah, Jake but it might matter in a month or two.” Jake nods. Strangely, he finds his voice and begins to lighten things up. He makes a few jokes about “sharp objects” and “shoe laces”. There is now laughter in the room. One has even found a chair. Jake asks questions that he has no interest in. They start to fill him in. So and so got into law school. The neighbors are selling the house. The Flyers lost in the first round. And it’s supposed to snow tomorrow. Nobody asks him much. There’s not much to say anyway. Jake appreciate that they don’t feel the need to go there. But they do tell him that the doctor is confident and that he might get a pass to go outside tomorrow. “What in the snow? In my gown?” They laugh knowing that he’s trying to be funny not critiquing what they are saying. But one of them, looks a bit puzzled even annoyed. The patient asks what he is saying to the other sister standing while wondering if he sounds paranoid. His brother hesitates and says, “you seem fine to me”. “what are you doing here?” The sister who brought the ritz can feel tension. She feels a need to defend Jake whose first authentic feeling of the day is shame. “Sam, it might be best if you wait outside now”. The other sibling looks confused. And asks, “what was that all about?”. Time jumps. Jake hears them in the hall. The one sister is saying “doesn’t he realize that Sam worked all day and gave up his kid’s time to come here”. The first sister peaks her head in one last time and says, “Jake remember nothing stays the same; this too shall pass, Good Night”. They are gone just before the voice comes on the speaker to announce that visiting hours are over. Jake looks over for the first time in hours to see if his roommate is awake. He wonders if the guy even has a family. He can’t see his eyes but the drool  from the corner of his mouth suggests, he’s not. It’s going to be a long night. And hopefully a long time until another visit.

A little but not too late.

Some days, I feel that my improvements this time are going to be “too late” and not enough to make me feel a useful person for this world. It is very important for me to create and to accept on a gut level what “enough” means. Also I need to forget thinking about the life that I had hoped for and accept the pain that came with having another brain injury that took away years of hard work and persistence to get in a late position to realize certain dreams that I had once had.

I want to be like the children building sand castles on the beach. They do not see it a waste of time putting in all the effort to build their castle when a wave comes and takes it away. They don’t care if the beach day is coming to an end. They stay focused and go to a new spot even if the sand is not as good  and they begin building again. They enjoy it all. And if their mother says it is time to go and they have just started on their new sand castle that is incomplete, they may stamp their feet and protest to their mother, but soon enough they are sleeping in peace from a day well-spent.

“Show Me the Way” even if its the door!

As a TBI survivor many times over, there is one thing I’d like people to be with me. Blunt. Say what you mean and mean what you say. I’m sorry, reading between the lines is not easy for me. Sometimes, I get your hints, but usually there is a lag time. I will not take offense. In fact, I will like you more. When you have no patience left just say “I’m tired now and don’t want to deal with you. There is the door. Leave.” Wouldn’t it be nice if people who have trouble understanding non-verbal cues, could hear this more.

“Are you my friend”

In Argentina they have a “friend day”! Here we have mother’s day and father’s day and they also celebrate these days. But being isolated from friends for so many years, I would like to see my country have a “friend day”! Now before you get thinking that I am thinking how great Argentina is, please consider that  I am very proud of my background and almost gave my life for it. But we won’t get into that.  You will find me alone still standing for the pledge allegiance especially ” God Bless America” and if I have a cap on, I’ll take it off. Yes, all alone. No show and tell. I’m introverted in a society that adores its extroverts. I’m not too competitive in a society that loves its winners. And I have had multiple brain injuries.I realized that my people saw my problem as a weakness and other cultures saw me as valuable. I don’t know why or how that played out, but I do not feel that modern medicine knows much about brain injuries and that no matter what your political stance is that our returning soldiers need your appreciation and not on a superficial level. My blog is about traumatic brain injury and how it affects people on levels that most people could not imagine. It is not a political blog.  It is pro-soldier, in that most soldiers like my father come home changed men. And we as a people need to become more understanding of PTSD and TBI. I also believe that we could all use a good friend. Be a friend to a vet or at least go visit your mother or father in a nursing home even if they have temper tantrums and hardly recognize you.  Being a coma survivor, I can tell you that many of them know more than you could imagine and they need your loving touch and your presence.

Are You My Brother?

When things go wrong with the mind, there is a tendency to demonize or to romanticize it. I never understood enough to know that there was anything to demonize or to romanticize and I couldn’t even get that people were demonizing it.  I know that I am no JOB and myself in need of grace of mercy, I cannot feel this anger at the medical system that in the words of my last girlfriend who was convinced that I was autistic, said “The medical system let you down, Luka. I’m sorry.” My first somewhat successful job after the coma time, came teaching ESL. The fact my students were from a different culture and did not understand language much, was a huge help. I was basically alone, free of those moments that I would get sensory overload or lose context due to lag time in understanding. I also felt their marginalization feelings on a gutt level. But when our “side by side” textbook had me modeling the dialogue “this is my brother” or How many people are in your family? I had to leave the room and I cried hysterically alone- not knowing why. Later I figured it. a Salvadorean student who was very intuitive told me to come visit and she spoke of my “soul injury”.  The fact I remember her saying this 23 years later. Teacher I’m sorry something happened to you. You are a very noble man, and it’s ok. Tell me about your family.  Where are they? Ok teacher don’t answer, it’s ok.

“Are you my mother”

Traumatic Brain Injury- May, 2015

The early 90’s were a strange time for me and the visual that comes to mind tonight is the well-worn cover of a book that is pale blue/aqua with some yellow that stands out. It contains a children’s story of a perplexed baby bird who has fallen out of the tree and is trying to make sense of his surroundings while instinct tells him he needs to find his mother. The book is entitled “eres tu mi mama” (“are you my mother”) the symbols of this book now have a tremendous meaning to me. The story captures much of the experience that we MTBI survivors understand on a personal level. The bird is existing but he is out of synch. He has lost “context” (or never had it) and his urgent need to find his mother does not match his curious meandering and pondering. No, I doubt the bird hit his head on the fall, but he might as well had. The bird is unaware of his plight. His naive nature is age not a result of injury but nevertheless I relate to it. A predator? What is that huh? He does not understand that his survival is in jeopardy. He comes across several beings and finally a big crane. He is very bewildered but nothing seems to really register. This works in the bird’s favor as he does not panic.  He fits in nowhere and is brushed aside which he glosses over and smiles in an amused state. He even tries asking this big machine with a crane “are you my mother”.  He is somehow jovial strolling along unaware of the fragile state that he finds himself in. And this is how some of feel in between our fatigue issues and depression from fleeting realizations that something has been lost. I imagine that if the bird were a human he’d be seen as a “punch drunk” or a bird that played “too many games without a helmet”. (My own mother threw out that line in a non-malicious humorous way when I was young. But it is no laughing matter when it speaks to my experience some 40 years later.) I now picture the bird going through the other stages of recovery and see that if the book was longer it would not been the children’s book section but in horror fiction. But the book has a pleasant memory attached to it. It is the affective memory that has me thinking about it tonight. I see my daughter looking at me with eyes pleading and her mouth saying “otra vez” “again” The year was 1994/5 and two years had passed from my coma state. My comfort zone was a healthy distraction -a two year old and a child’s book. And I was unaware why it was so comfortable. And how the word “again” was one I wanted to hear. Yes, the instinct to parent was there and the blessing huge!  But the PTSD need for distraction was being met in area that I felt intellectually competent and a perfect atmosphere even if I hadn’t processed it yet.

Aside from not really understanding the severity of his plight, he sets out to find his mother. (his mirror). The one who will meet his physical needs and help him figure out who he is and that he is worth keeping. These needs are very much like the TBI survivor’s especially in those first years and I want to shout from my treetop to tell all the “care-givers” but this blog must do for now. Peace! Luka