Saturday, March 9, 2019
How to survive TBI
The thing about TBI is there are so many degrees and variables. Some recent information I have found suggests that the degree of recovery and lasting effects may be directly related to the amount of social and psychological support the person has.
... At 12 I was pretty screwed. While I had a lot better support than many people in the world, and I love and appreciate my parents, they had pretty screwed up thinking patterns and psychology from their own traumatic life experiences so it was not exactly in line with what a person needs when recovering from TBI.
Maybe that is why I really liked this article I found:
https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know#comment-44708
I especially wish my parents had understood this one about me when I was a teen:
"We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can."
[I was really screwed on that one because Negative and Critical are my parents' middle names]
That and the stuff about sleeping. I got raked over the coals a lot about sleeping too much and being lazy.
...which is really stupid now that I think about it because in high school I was on the cross country, track and swim teams. Regularly placing, #1 for girls in distance running -holding at least 3 school records. I was on the yearbook staff, I was active in my church activities, I participated in student counsels, I was in the honor society and usually held at least one job.
...sigh... reprocessing
maybe I am not so worthless. ...although I was battling serious depression, mood stability and suicidal thoughts then.
some reliving there.
...But I have made huge progress. I do have much more ground now than I did then.
.... and yet so much less at the same time as my life and prospects grow ever shorter and ever stranger.
40 is possibly my weirdest year yet.
and for some strange reason I find this encouraging.
Dilemmas
Filing a complaint/ opening an investigation
Why am I struggling with that so much?
I don't want to say the wrong things, yet I know I will make plenty of mistakes
I don't want to do undeserved damage to anyones career or reputation but who am I to judge goes both ways: speak up or shut up, either is making a judgement or appears to be.
But I think the biggest reality that I am really struggling with is my sense of self worth
Do I really want my worthlessness and/or ability to screw things up to be confirmed to the next level?
Thursday, March 7, 2019
28 years crushed
I was able to talk to my sister the other day.
The one that is 13 months and 3 days older than I.
We shared a room and just about everything else growing up and she was there (age 13) when I (age 12) sustained the TBI from the tree that my tube collided with upon descending a snow covered path. She was the one who was furious when she saw them pulling my seemingly lifeless body in a sled across the field to the cars. My head rested on her shoulder or lap as she accompanied me home and then to the hospital. She has never even complained about me throwing up in the car, and then riding to hospital in that car. She had to fill out incident reports and medical histories about me. She listened to me scream from the other room "don't take my clothes off" when they were trying to get me into appropriate hospital attire.
Though it was a closed head injury it caused some swelling that lasted awhile and she remembers my head being swollen and squishy. I remember that part too, but the memory of it doesn't bother me nearly as much.
It was a very traumatic experience for her.
This is my sister who knew me better than anyone. I was often her little shadow. She knew me before the accident and she knew me after. She has always seemed to know better than even myself how the accident had effected me.
She is the sister that saw, through our adolescence and beyond, how the head injury effected friendships and relationships. She watched me struggle and has confessed she wishes she had known how to explain to people what they didn't understand about me; that even though it was me it wasn't really me.
So when I told her of how things had taken a turn with my neuropsychologist,
she was very angry.
She was furious when I told her that at one point in trying to understand all of this, my concussion doctor -after discussing with the neuropsychologist- had suggested that the concussion problems may be secondary to mental illness.
"No, the only reason you have mental illness problems is because of head injury!" she fumed. "They need to understand that"
and she was furious that the office manager treated me the way she had. She was baffled that a place that treats people with neurological conditions would ever think that is a good idea.
She pointed out that they put my life in jeopardy. I explained to my sister that I was no longer in crises when that lady yelled at me, but she pointed out it did not matter and that I was still vulnerable. She is right.
Sometimes we need big sisters to speak up for us.
And it was especially wrong considering I had recently had a manic episode. I do not like to admit things like this and also I have made such huge progress I like to not focus on it as much as possible, but the truth is I have had to be hyper-diligent in fending off and being aware of suicidal thoughts and feelings.
and that is all I want to say about that, because I know enough to know I don't really want to die and if they plague me too much or start tainting other desires I've got loads of tools to fight it... including the antidepressant that my doctor recently doubled my dose of.
But even more than all of this the one thing that my dear sister was able to recognize, the most important thing I tried and have tried to explain to Dr. He, was that that moment of him deciding I was done with TBI related treatment and therapy was actually the beginning of me accepting how TBI was the part of my whole self and the perfectly imperfect part of my life that I need to come to understand and accept in order to really stay connected with my self and feel that I was of value.
In that moment, 28 years of hope were crushed
as he dropped me and then allowed me to be transformed into whatever monster of a liar or "crazy person" his facility has painted me to be, ignoring the fact that head injury is what drove me there and what has been driving me to be heard ever sense.
My sister got it as she put it into the word context of what I was trying to explain "28 years of hope were crushed." She understands the magnitude of this for me.
I cannot just let this go. To do so is to die. I cannot believe that I do not belong or am unwelcome at a neuroscience institution that specializes in treating people with TBI, especially when they were my hope and chance to rewrite the wrongs of abandonment and rejection that had perpetuated the negative effects of my first TBI related emotional regulation difficulties.
The rejection of a man I connected so easily and naturally with and could love in any form is one thing
but coupled with the rejection of my broken brain where it is supposed to be safe and cared for is too much to bare.
So I fight for me.
The one that is 13 months and 3 days older than I.
We shared a room and just about everything else growing up and she was there (age 13) when I (age 12) sustained the TBI from the tree that my tube collided with upon descending a snow covered path. She was the one who was furious when she saw them pulling my seemingly lifeless body in a sled across the field to the cars. My head rested on her shoulder or lap as she accompanied me home and then to the hospital. She has never even complained about me throwing up in the car, and then riding to hospital in that car. She had to fill out incident reports and medical histories about me. She listened to me scream from the other room "don't take my clothes off" when they were trying to get me into appropriate hospital attire.
Though it was a closed head injury it caused some swelling that lasted awhile and she remembers my head being swollen and squishy. I remember that part too, but the memory of it doesn't bother me nearly as much.
It was a very traumatic experience for her.
This is my sister who knew me better than anyone. I was often her little shadow. She knew me before the accident and she knew me after. She has always seemed to know better than even myself how the accident had effected me.
She is the sister that saw, through our adolescence and beyond, how the head injury effected friendships and relationships. She watched me struggle and has confessed she wishes she had known how to explain to people what they didn't understand about me; that even though it was me it wasn't really me.
So when I told her of how things had taken a turn with my neuropsychologist,
she was very angry.
She was furious when I told her that at one point in trying to understand all of this, my concussion doctor -after discussing with the neuropsychologist- had suggested that the concussion problems may be secondary to mental illness.
"No, the only reason you have mental illness problems is because of head injury!" she fumed. "They need to understand that"
and she was furious that the office manager treated me the way she had. She was baffled that a place that treats people with neurological conditions would ever think that is a good idea.
She pointed out that they put my life in jeopardy. I explained to my sister that I was no longer in crises when that lady yelled at me, but she pointed out it did not matter and that I was still vulnerable. She is right.
Sometimes we need big sisters to speak up for us.
And it was especially wrong considering I had recently had a manic episode. I do not like to admit things like this and also I have made such huge progress I like to not focus on it as much as possible, but the truth is I have had to be hyper-diligent in fending off and being aware of suicidal thoughts and feelings.
and that is all I want to say about that, because I know enough to know I don't really want to die and if they plague me too much or start tainting other desires I've got loads of tools to fight it... including the antidepressant that my doctor recently doubled my dose of.
But even more than all of this the one thing that my dear sister was able to recognize, the most important thing I tried and have tried to explain to Dr. He, was that that moment of him deciding I was done with TBI related treatment and therapy was actually the beginning of me accepting how TBI was the part of my whole self and the perfectly imperfect part of my life that I need to come to understand and accept in order to really stay connected with my self and feel that I was of value.
In that moment, 28 years of hope were crushed
as he dropped me and then allowed me to be transformed into whatever monster of a liar or "crazy person" his facility has painted me to be, ignoring the fact that head injury is what drove me there and what has been driving me to be heard ever sense.
My sister got it as she put it into the word context of what I was trying to explain "28 years of hope were crushed." She understands the magnitude of this for me.
I cannot just let this go. To do so is to die. I cannot believe that I do not belong or am unwelcome at a neuroscience institution that specializes in treating people with TBI, especially when they were my hope and chance to rewrite the wrongs of abandonment and rejection that had perpetuated the negative effects of my first TBI related emotional regulation difficulties.
The rejection of a man I connected so easily and naturally with and could love in any form is one thing
but coupled with the rejection of my broken brain where it is supposed to be safe and cared for is too much to bare.
So I fight for me.
Wednesday, March 6, 2019
gaslighting?
I learned a new term today "gaslighting"
I feel intimidated and small, and I question myself.
I am not sure who I can trust and every effort takes immense courage.
But my efforts are being used against me.
...and even in things unrelated to where I feel that gaslighting may have happened
it takes immense courage to put myself out there
... even for the sake of my kids (maybe even more for the sake of my kids, because I don't want to screw things up for them)
I feel intimidated and small, and I question myself.
I am not sure who I can trust and every effort takes immense courage.
But my efforts are being used against me.
...and even in things unrelated to where I feel that gaslighting may have happened
it takes immense courage to put myself out there
... even for the sake of my kids (maybe even more for the sake of my kids, because I don't want to screw things up for them)
Monday, March 4, 2019
Power Struggle?
He rubbed his right eye with his right middle finger
while listening to the song I played to help me express the feelings my mind was blocking me from expressing
my transference feelings
the stuff that all the online research had told me I "should" discuss with my therapist
(and there it is that word "should" the mistake of my cherished golden map...)
The stuff that skilled therapists looked forward to as it meant their patient was ready to really start making progress.
Safe, trusted, responsible, skilled therapists
he was that to me... I knew he could help me
he was in the position of power
...but I was not willing to give that to him
There is something more to this story.
while listening to the song I played to help me express the feelings my mind was blocking me from expressing
my transference feelings
the stuff that all the online research had told me I "should" discuss with my therapist
(and there it is that word "should" the mistake of my cherished golden map...)
The stuff that skilled therapists looked forward to as it meant their patient was ready to really start making progress.
Safe, trusted, responsible, skilled therapists
he was that to me... I knew he could help me
he was in the position of power
...but I was not willing to give that to him
There is something more to this story.
How deep or diabolical it is I don’t know
but I know that amidst the omens of gods and spirit animals
it is not the time to drop a patient of psychotherapy
Sunday, March 3, 2019
TBI: embracing my "disability" ?
The more I learn about head injuries (TBI- traumatic brain injury) the more I wonder if part of the counter-transference problem is that I am a physical manifestation of his profession and maybe even of his own work. (and a not so bad looking one either) Everything he has dedicated so much of his life to I embody in a real life form. I have developed my own ways to adapt and the more effective ones, I am sure, have mirrored his studies while other adaptations may make him question. But I am a manifestation of longterm outcomes of TBI.
I don't think he wanted to see that in me.
When he said something to the effect of "being willing to take that on" I wonder if that was a negative stigma and prejudice he, himself held, jaded by his education and career. He has to maintain superiority and elevated status?
I felt it was a major slight to me. Am I Michael Bluth's Mr. F?
Maybe.
But I am not less.
I am significant and I could be of value in the industry and to the facility that has so callously turned their back on me.
I know this field. I know TBI. I handled it alone and built a box to keep it contained that, though incredibly flawed, fooled even the best.
I don't think he wanted to see that in me.
When he said something to the effect of "being willing to take that on" I wonder if that was a negative stigma and prejudice he, himself held, jaded by his education and career. He has to maintain superiority and elevated status?
I felt it was a major slight to me. Am I Michael Bluth's Mr. F?
Maybe.
But I am not less.
I am significant and I could be of value in the industry and to the facility that has so callously turned their back on me.
I know this field. I know TBI. I handled it alone and built a box to keep it contained that, though incredibly flawed, fooled even the best.
Dear Exiling Therapist,
Why did you choose to go this route with me.
To banish me from the hope of recovery
the hope of reconciling my split parts with an understanding of how TBI had effected those splits
To take away any hope of successful reconciliation with anyone
...successful communication
To devalue me so completely.
"you want something to cry about, I'll give you something to cry about"
Do you think I am a fraud in your industry?
Or are you all frauds in your industry?
Is the industry itself a fraud?
I suppose in a very sad way that can give me hope
but can it?...as I continue to fail in my attempts to prove
that I am worth investing in.
Will I ever be given the chance to prove myself or have I already proven myself to my fullest potential
and I need to resign myself to acceptance of this life the way it is and being what everyone else believes it should be.
To banish me from the hope of recovery
the hope of reconciling my split parts with an understanding of how TBI had effected those splits
To take away any hope of successful reconciliation with anyone
...successful communication
To devalue me so completely.
"you want something to cry about, I'll give you something to cry about"
Do you think I am a fraud in your industry?
Or are you all frauds in your industry?
Is the industry itself a fraud?
I suppose in a very sad way that can give me hope
but can it?...as I continue to fail in my attempts to prove
that I am worth investing in.
Will I ever be given the chance to prove myself or have I already proven myself to my fullest potential
and I need to resign myself to acceptance of this life the way it is and being what everyone else believes it should be.
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