Participating Artists: Ruby Marcotte and Eugene Williams
Art Piece Story: This is the moment of sharing our inner sanctum with you, the viewer. You are now looking at one of the many moments in our lives since we have experienced brain injury. We have openly and honestly shared our truths so that you may learn more about brain injury. The words around the edge of the art piece represent the emotional facets that fill our lives; affirmations, organization, brain, understanding, concentration, denial separate entity, support, honesty, stumple (I mean stumble), duality, emotions, difficult, isolation, faith, mind reader, overwhelming, frustration, humility, and compensation. Time was spent writing in detail about these words. A conscious choice was made to place positive writings only on the table because the table is symbolic of unconditional love and support. Praying hands exhibit the faith, internal or external, that is the center support for our personal scales. We must constantly struggle to re-create balance in our lives. Although different in origin, the light bulb and the candle have the ability to achieve the same goal– enlightenment. Just as, coming from different paths, we have to find the way to achieve our own personal balance. A head with the ability to heal (which doesn’t come fast enough) balances atop the scale. The face depicts the human expressions of duality. The background surface, painted yellow, is filled with writings about the frustrations and other limiting aspects of having a brain injury. Some writings reflect the humor that is necessary to cope.
Participants’ Stories:
STUMBLE over:
WORDS
RESONING
CHARACTER FLAWS
PUTTING THINGS IN ORDER
WHERE HAVE I BEEN and
WHERE AM I GOING
the list is endless……..
Emotions-this word is really unclean to me but I know that crying is an emotion. Crying releases tension. Crying there has been alot of it since my head injury. Anger is another emotion. Working through the anger will always be an on going process. I get angry at myself when I have repeat and repeat a function over and over again. But the good thing about EMOTION is, it can be balanced by the positive.
things into simple terms-I’m gonna call someone who has similar experience/situation
Affirmations-
I’m getting to feel inadequate sitting to near Ruby. And thinking that I could put more substance to my writing from before not comparing. I’ve now done/completed what I was down on myself before about. I feel much better. A lot of that stuff was kind of floating around in my head. It’s like having company in the house and ignoring them-now I’ve paid them attention. I’m ok to be a host functioning. I’m not inviting you to live here. It’s what to perceive it as. I’ve never my feelings that someone in my house-they ought to feel comfortable-it personal satisfaction . The brain injury is here- I can’t bait it nothing I can do to make it go away-it will go on its own schedule. I didn’t like that-but I haven’t yet. But it’s certainly not beyond the realm of possibility.
Frusteration- Color as a kaleidoscope. I think that, not because I’m unique, but I’ve kinda have an analytic eye. When I’m frustrated I examine all of the facets of the frustration itself. If I’m unable to do a particular thing, like climbing a ladder, I’ve never had a fear of heights, feeling very anxious and fearful of climbing a ladder, I simply look at it now b/c my sense of balance is distorted. But that answer is not satisfaction to me. I know my balance is not 100%. But I keep saying Why? Why? So I go back and tell myself that I’ve had a brain injury. And I have no power over the outcome. And experiencing that powerlessness lack of power, is a seed bed frustration for me.
Powerlessness- I can relate to this in my experience as an addict or alcoholic that once I pick up that drink, etc…Its like putting a ring through my own nose. And the negative process is sometimes as powerful.
The emotional state refutes the intellect, setting off a recurring civil war-& further negotiation, sometimes I win, sometimes I loose. That’s about it really. That goes on during my waking hours some days more-some days less. And that’s what it’s about. It is frusteration-end of story.
FUTURE DREAMS/GOALS- In a nutshell-to get to where I was I can only see it through patiene and perseverence. That’s all I can see by way of lets get out of this place. How do we get out. I really am, I regard myself as being flexible and willing to do whatever it is I need to do, because the option for me is unacceptable. I spent many many years reading lots of biographical books I’ve always salvated the author on the changes they were able to accomplish! Now it seems that it’s my turn. I have accomplished a lot of changes and I don’t want to sit on laurels. It goes back to perseverance-To me-I do not want to use the phrase Making up my mind! I guess it’s not inappropriate. Making a determination is probably a better phrase and living with that decision. I make a determination not to sit down and feel sorry for myself or sit and watch the boob tube and become productive. To be honest-when I say productive-it could be, for me, intellectual productivity, physical productivity, change lives, repair broken floor board, share with other people who have been through similar injury, what it was like for me so it can help them. One of my strengths has been my personal history, held me in good stead. I think that I try to put ……
SEPARATE ENTITY-My thought process sometimes goes it’s own way in spite of what I’d like it to do. Thoughts are disorganized, and sometimes totally unrelated, and as hard as I try, it’s difficult to get those thoughts back on track for more than a brief minute or two. It’s kind of like being a captain in the service or a general and having your orders followed and then waking up and finding the star is gone and a single stripe on the sleeve. That loss of control is bearable when it’s external, but loss of control over your thinking process almost makes you feel like some separate entity to be bargained with. Trying to persuade my thought process to stay on a specific subject or even in a general area, which it refuses to do for reasons it han’t sharred with me. Kind of makes me feel like I want to get physical, like punch myself in the head or bang my head against the wall…………
….find now he was absolutely right. I’m going to continue to try to be civil and learn what I can from experiencing the project-of getting well. It’s like me learnig to lay under block by block by watching guys lay under block. I kind of understand some of the basics-I haven’t personally experienced it-but I understand journaling importance, what we’re doing, I have to keep learning from others-
Experience and doing it are synonomous!!!!!!
Go to Group?? Why??
I’m perfectly okay!
incomplete inventory…too much of one product…not enough of another. Must empty and re-stock shelves; maybe change labels.
OH YES-GO TO THE LIGHT AND TAKE A LEFT. SO FAR SO GOOD. GO DOWN THE STREET 2 BLOCKS. GOOD I KNEW YOU COULD DO IT. THERE IT IS THE GREEN, NO GREEN DOESN’T SOUND RIGHT. MUST BE SHE SAID BLUE HOUSE. OH I KNOW HOW I CAN TELL SHE SAID SOMETHING ABOUT THE DRIVEWAY. I THINK SHE SAID IT WAS SHORT. OH OH LOOK AT THE TIME IF I DON’T HURRY I’LL BE LATE-LUNCH IS AT 1:30 AND IT’S ALMOST ONE NOW.
CONCENTRATION- It’s ther, I know it is. If I pay closer attention I can concentrate! Turn off the radio, turn down the harsh lights. Will somebody stop the dog from barking? I can’t.
CONCENTRATE. Make the grocery list shorter, there are too many items to choose from. How much did you say the bill is-#3.15, now is that a dime and a nickle or 3 nickles, stop talking I can’t CONCENTRATE. I finally drive my truck. I’m not afraid to drive on a lonely country road. One way there one way back. Lunch sure the break would be nice. Just take a left at the light, go down two blocks and you’ll see a yellow house with a long drive. See you at 11:30. Think now.
Understanding is a two way street. I must try and understand that not all people, actually very few, understand what I’m going through. The searching and editing of my words before I speak. The hours upon hours of trying to remember how to spell (still have a hard time.) The feeling that I will never be good enough and knowing at some point I will have to accept my disability. Understanding is having my friends and family be patient with me. Those that understand wait for me to process the information at my own pace. Understanding myself and others is a necessary word on the road to recovery.
Compensation, what that word means to me is finding whatever means possible to get a job done. Before getting involved with BAC and a wonderful woman named Maureen Del Giacco I had just about exhausted all means of compensating. Lists, notes, friends, family, unknowingly all these “helpers” were keeping my daily life together. I used pass words, colored coded and set up back up systems and then set up another system to back it all up. As gradually as I put all of this in place for several years it took only another accident and whiplash injury to tear it down. I ran out of ideas. The familar no longer worked. It was time for outside, professional help.
MIND READER-you know what? I am not a mind reader. Not yours and ESPECIALLY NOT MINE. But surely you must know that after my head injury I can no longer recall if I know you, have we met? You didn’t tell me to meet you at nine, if you had I would have been there. You know, why are you being so impatient with me? But you used to, what does a “BUMP ON THE HEAD” have to do with driving into town to meet me for lunch at OUR favorite restaurant?
Difficult, I had to learn to accept the fact that things were more difficult for me after my head injury. Things that I took for granted were gone either for awhile or forever, I didn’t know. Adding simple numbers, recalling telephone numbers, using the shower and saying, now which one is HOT? In the beginning it seemed unmanageable. OH YED DID I MENTION SPELLING?
Isolation-Being isolated was an unconscious way for me to deal with my head injury. By “keeping to myself” it wasn’t necessary to admit to the outside world that there was anything wrong. I felt if I didn’t have to speak no-one would know, I looked normal!
As I write this today more than 30 years post head injury, I would be no where without my faith. Faith in my all mighty God. Faith in people like Bitten Foster and Mureen Delciacco. Faith in a support group where people have similar problems and concerns. And probably most importantly Faith in Myself. I came very close to losing that but thank God people who cared and loved me stepped in.
HONESTY- There comes a point after TBI that you must be honest. How could I expect people to be patient, UNDERSTANDING, loving, if I wasn’t honest with them. I LIVE IT, ITS A DAILY FACT, IT IS “TRAUMATIC BRAIN INJURY.”
Brain- I hurt my brain. Why does it seem so different not to consider that it will take a period of time to heal. If you break your leg it has to be immobilized for a long time then given serious therapy to get it back to where it was before the injury. Sometimes it seems totally healed and you slip and turn it the wrong way. More time, more healing, more therapy. One big difference between brain injury and a leg injury it is obvious waht has happened. The road to recovery is clear cur but with an accident involving the brain nothing is obvious especially if one takes the path of isolation, denial, not being honest. The best way to heal is with knowledge.
DENIAL-THERE HAS BEEN LOTS OF IT. I felt that if I could continue to work and be productive there wasn’t a problem. Excuses were often used. I can’t, I’m tired, I’m sick, the kids are on my nerves, maybe later. All these things to avoid saying, I’ve had brain trauma, I don’t process as well as I used to.
ORGANIZATION-
BEFORE BRAIN INJURY- 1 2 3 4 5 6 7 8 9 10
AFTER BRAIN INJURY_ 3 5 7 6 5 8 9
1 22 4 10
OVERWHELMING
Too much thinking, so many details. I want to cry, scream in anger, it in a corner and pout. I get tired and confused. Will I ever be NORMAL? What is normal anyway? I think to myself-try harder-do more-no,!!-relax-Rest! I can’t remember-does the sauce go first on the pizza or is it the cheese? Oh never mind, I’ll just sit here and stare out the window and wait-wait for what, I ‘m not sure.
I CAME THROUGH THE VALLEY OF THE SHADOW OF DEATH…INTERESTING TRIP; GLAD IT’S OVER!
MADE A DEAL WITH MY BRAIN…HOPE IT CAN BE TRUSTED!!!!!!!!
Isolation-For me, isolation is pretty recent experience, since the head injury. I’ve always been social, outgoing.
Having to deal with other people as a sales person was never a problem for me. I’ve always had lots of friends-male and female, over the years! I’m feeling like people are avoiding me or wanting less to do with me on a social level. And I kind of attribute that to friends and acquaintances knowing I have a head injury. They are intimidated with dealing with me. Things that strike me, I’ve always had friends call-since I’ve been home the phone has ceased ringing period. I feel isolated. It’s a very needy feeling and kind of frightening because it’s so alien to my personality and my attitude that it’s kind of like having a board of health notice-contagious disease-on my door and I’m powerless to remove it.
Humility, living with this traumatic brain injury has humbled me. Oh what I took for granted before it. Just being able to look at an object and name it correctly no longer comes easily. When I want to voice an opinion, and no matter how hard I search, my words aren’t released. If they are they fall out without meaning. Humility is finding the courage to say I can no longer do that. I have to retrain my brain to do some of the simplest tasks. Reading and rereading is a way of life. Do I really understand or am I just pretending?
FRUSTRATION IS……..
BEING TURNED DOWN FOR A JOB I KNOW I CAN DO.
BEING UNABLE TO READ MY GRANDDAUGHTER JENNY A STORY AT 3RD GRADE LEVEL.
BEING UNABLE TO BAKE A CAKE WITHOUT GREAT CONCENTRATION AND A SYSTEM OF HOW TO KEEP IN INGREDIENTS STRAIGHT.
HAVING TO EXPLAIN
LOSING MY FOCUS SO AS TO BE ABLE TO FINISH A THOUGHT OR A PROJECT.
If you were part of this fantastic creation and want me to edit or add anything about your art piece or stories on the web site, please contact me! – Namasté, Bittin