The Unfair Fight

Yesterday I went to the Brain Injury Alliance Conference.
It was refreshing and painful.
What was refreshing was talking to survivors. It is interesting to see the levels of severity, the diversity and the similarities. It  was refreshing to talk to and hear stories and to hear the similarities. It was fun and fascinating to hear how many similarities we have that others think they understand or relate to but just don't quite get.
TBI cracks you open.
TBI makes it difficult to articulate.
and a common complaint, "but you look fine."
Yep.
What was painful was realizing just how much I have hidden myself over the years and how much I have been misunderstood, discredited and my symptoms downplayed or overlooked. It was painful to once again have to face just how alone I really have been in my journey.
But with that pain I also realized just how much I have accomplished, and how far I have come. I really can be proud of myself. I realized that I have accomplished significant things comparable to what these doctors have accomplished, and some of it I legitimately understand better then the doctors.
Their research confirms and validates me.
What I also found interesting is just how delusional, arrogant, and ignorant the professionals can be in their ego's.
I am going to criticize here.
I talked with a well known neuropsychologist while I was there. She is a beautiful and well poised little thing. She is intelligent and has obviously done well. She works specifically with people who have concussions and TBI and has developed an entire rehabilitation program that is unique and well marketed.
I wanted to know if she knew anything about the Neuroscience Institute. She did not recognize the name so she asked me who my doctors had been. I told here. She personally knows Dr. He, my ex-neuropsychologist. Now this is where the conversation gets tricky, though I will admit she came off a bit arrogant from the get go, but then she turned real arrogant and defensive using her status and profession and that bullshit claim of "ethics" in her attempt to avoid conversation.
In her defense it was unexpected, it would have been confusing, and if the situation were reversed I can't say I would handle it any better (*note added 5/14/2022- I had to deeply entrenched a habit of debasing myself while simultaneously giving too much credit to others. I would have handled it better and I have demonstrated that many times).
But... and there is that but,
what was most interesting was that she tried to tell me she wasn't my therapist and she really wouldn't or couldn't be because of the conflict of interest.
This part of the conversation was interesting because obviously I was not asking her to be AND how ignorant and presumptuous to assume that is what I was looking for or that I even needed that.
I do not need another artificial environment to try and "work through" these issues.  I need reality.
Ultimately I apologized to her for making her uncomfortable and I tried to explain, even though she did not want to hear it, and likely did not, as I tried to explain that it was a difficult situation that I simply don't know how to handle and their is still a part of me that just wishes to understand what was going on with him and why because I really don't want to hurt him. She could care less about anything I had to say and was rude and harsh.
And the comic irony of it is that is probably the reality I needed to see.
This lady who has so much experience and expertise with TBI being so offended, rude and harsh to a TBI survivor at a TBI conference, for behaving like someone who has had a TBI and also been treated badly by her people in her industry.
TBI effects filters
and boundaries
We seek for clarification by asking questions
We are often accused of being too honest,
too blunt.
We are emotional and feel things more deeply.
We have to fight to survive.
Depression and suicidal thoughts are common
...so many things
and might I mention that the ethics of this situation were obviously so warped and I had been treated so poorly with no resources to help, that this boundary violation of mine with this lady at this conference is equivalent to stepping on a sidewalk crack.
This beautiful lady, could not seem to realize that obviously therapy was not even in the vicinity of what I was asking of her and she also could not control her own defensive unprofessional emotions even in an environment where a conversation like this, bold, too honest, and confusing, could be expected, since it really comes with the territory. She lacked empathy and she could not seem to understand what I was asking or why.
I am left reflecting and feeling like there is a lot of fraud in this industry.
But in it, in the reality of my willingness to make an ass of myself for any kind of understanding and closure, it has also helped me see more clearly the arrogance, ego and ignorance of the Neuroscience Institute more clearly as I got a glimpse of the reality of the professionals in real life and real time when I was not manic and so very broken and still foolishly trusting them, the experts and my providers. She was not and has not been my provider but in her taking that approach of acting like I was asking for that I suppose, for a moment, she provided a transference scenario for me that helped me to see better who the people at the Neuroscience Institute really are.
So maybe I am harsh here and I am criticizing. I realize this may negate my apology but upon reflection -and touch of chastisement from a fellow TBI survivor who pointed out that, by apologizing, I was  (at least partly) approval seeking and trying too hard with a person that didn't care and was being a jerk- I think I am okay with that. I am okay negating my apology because these things need to be talked about and addressed and it is too bad if it makes people uncomfortable. I know, because it makes me and has made me very uncomfortable for many months now; especially since it has kept me neglected and it has had very real effects and consequences on my treatment that are not fair. So maybe I was not fair to her, but there in lies the problem with people not accepting responsibility for their actions, especially people in positions of power, and the problem with allowing the perceived week and vulnerable to be the scape goat; the ripple effect brings not fair to far more than it needs to.

I have very literally been fighting for my life and I am not done fighting.
I am improving. I may soon be able to let this go and switch from fighting to doing, I feel that change coming and happening. I am letting go the more I see the reality of their delusions that I threaten. The hard part now is deciding if I should allow them to continue in their delusions or if I should fight that because they are causing harm...