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Friday, September 6, 2019

Happy Stories

The roads less traveled:
Last week I had a Friday morning appointment with Dr. She (new Neuropsychologist) and since apparently Friday morning traffic isn't as bad, I found myself arriving in the city with extra time. I really don't like how crowded the main streets can get in the city so I decided to see if I could find an alternate route on the less used and unknown backstreets.
As I explored these less used roads I enjoyed the peacefulness of it and seeing places I had never seen before. I don't think it was any faster but I enjoyed it. Then it occurred to me what I had chosen to do with my extra time.
I laughed at myself as I realized how very reflective this was of my patterns of thinking. Always looking for other options and taking different routes. I shared it with Dr. She, she also found it amusing.
Awhile back I made a meme about something like this, it has a picture of 2 kids working on academic tasks and reads "Not all who wander are lost." I will not share the meme because it has pictures of children and I do not wish to tie them to this blog, but you get the idea.
It is funny how our thinking and behavior patterns can manifest themselves in so many ways.

Omens:
Even though I know it can make me seem crazy and truthfully I can, at times, struggle with finding the right balance here, I believe in omens, signs and symbols. At certain times there seems to be more appearing than at other times. Maybe I am just paying attention, or maybe my mind feels it needs them so I subconsciously find them. I don't really know and I don't really care all that much because I think omens are fun and they make life so much more interesting.
Yesterday this little guy showed up. I was already in the house before I noticed him crossing from my shorts to my leg. It is a ladybug. I don't remember where this superstition came from but I think it is a common belief that when one lands on you it is good luck.
I like this omen. And I especially like that it came the day after my "Lucky" blog entry.
A little glimmer of hope I carefully passed along to our aphid infested roses.

More Lessons from Art Therapy:
Sessions with Dr. She are so helpful, and I feel so level and clear minded when I am talking with her these days, but is is still very tiring work for me. So yesterday I decided to paint to help relax my tired brain.
I have been wanting to paint more structured and intentional paintings. Like maybe learn to become a "real" artist, with some skill... I got this far:
Then got tired of it. Bored or too insecure to continue, I am really not to sure which. But I decided to abandon that for a bit and ended up painting this:
 Which eventually turned into this:
And it is so silly but I really like this weird picture. I enjoyed painting it. I enjoyed the process. It makes so much more sense to me and it feels comfortable.
So am I a bit stuck in my own unstructured box - a child's messy toy box? Or am I learning to embrace and appreciate the me that I am?
Maybe both, since I am likely to return to the Tiber and see how I can distort that world.
And so my lesson in art therapy yesterday... Well, I am not entirely sure yet, other than I seem to have a specific style that suites me for my sake and maybe that is okay.
Or maybe the lesson is that I am too ADD to be a lot of things
-including a stalker. And I think that is funny because I think Dr. He wanted and tried to paint me out to be one in order to save his own ass. Only asses need to save theirs by-the-way.
And I do wish the level of light hearted humor I say shit stuff like this would come across better in my writing and communication. Maybe it is a TBI or "prior undisclosed behavioral health" sense of humor that normal people just can't understand.
But, just so you know, I am not crying, I am laughing.
So, dear world, you are welcome to laugh with me.

Self Esteem boost:
My daughter has been really great for my self esteem lately. Today  she told me this is my theme song:
Dark Horse
I am the Perfect Storm
and she is Fabulous.


controlled re-entry?

I think sometimes when I see a glimmer of hope I grab it so quickly and tightly that I crush in an instant. Other times I watch and admire the little glimmer with adoration yet too insecure to catch it and keep it for myself; letting it float buy to find a more worthy recipient.
I would like to take those glimmers of hope and carefully plant them deep in my chest and then nurture them until they grow into a bright and lasting ray and a beacon of hope for others trying to navigate the waters of their own rocky shorelines.
So I am trying to both take it slow and pay attention to the glimmers of hope floating all around. I am trying to listen to each one to hear their story so I might know how to handle them carefully before I reach too quickly and carelessly.
So today as I debate staying awake or allowing sleep to overtake again and again, I find the desire to ramble down another dusty scenic byway of my brain and share stories about the journey.
...sleep keeps winning by the way. Maybe because I am trying discuss-and-compromise while it is straight up fighting to over take. I say, "okay, I'll just shut my eyes for a moment" and then sleep has me. again.
I suppose I'll fight back now with Aderall and then return to my ramblings because today that is feeling more important than once again jumping too quickly back into the world of the living and crushing my glimmers of hope.



Thursday, September 5, 2019

Dear Dr. Creon

My daughter had to read the Ancient Greek play "Antigone" for school. She really liked it and insisted I read it too. I think she a had bit of ulterior motive in having me read it. She can be a bit like that, communicating her feelings through sharing indirectly related items or themes.
It was easy to see, especially as she explained to me who the main character really was, who she connected Creon with.
She may be right.
And that is the lead in and slightly vague backstory to this letter of mine:

Dear Dr. Creon,

Please stop. Please don't sacrifice Antigone for the sake of your ego. It does not have to be that way. She means no harm to you or the kingdom.
It is all madness, hers and yours. You are the one in power and you have the power to stop this madness. Please stop the madness and the perpetuation of the damage and harm already caused by these wars that were born from misunderstanding then fueled by egos, passion, and power.
Listen and be open to discussion and negotiation.
You are not on opposing sides.
Please see that, before it is too late.

Sincerely,
Your Once Loyal Subject


Wednesday, September 4, 2019

Whose to blame? and how to change?

Circles.
It is time to get out of this loop. And I think I can now. I have not wanted to file that report with DOPL because without help from someone I would have likely filed in an incoherent illogical way. Just ask Patient Advocate, of course that should have been sufficient evidence that a missed or misdiagnosis had certainly transpired but they choose not to see it that way. The gods that they are.
Here is the thing that really REALLY BOTHERS ME, doctors and nurses are told by their superiors and the facilities they work for to never admit fault. Never admit a mistake. I do not know if this is just a local common practice or if it is nationwide. However, I do know it is ethically and terribly wrong.
If the mistakes had been addressed early on I could have avoided a whole lot of problems, but instead they perpetuated, fueled and fed the problems in there denials and acting fake treating, constantly trying to pass the buck so that I would go away.
So the real problem, as I see it, -the much bigger and more disturbing issue- are the industry standards of not accepting responsibility, denying, ignoring, and passing the buck. It is malevolent and abusive.
They claim to do this because of "all the sue happy people" so basically they are retaliating. But their retaliation is not targeting those who have "hurt" the industry, they are retaliating against me and people like me. People who accept that doctors are human, flawed and make mistakes, and are willing to forgive them easily in exchange for the correction. But they will not admit fault, thus, especially in a situation like this, they cannot correct their actions and further perpetuate harm.
It is stubborn and asinine but they get away with it, time and time again. Who knows the reality of lives and livelihoods lost due to these apathetic practices.
We preach honesty and yet repeatedly punish the honest.
And the thing that gets me, that keeps me from moving forward, is that I know that in order to be heard the massive organization is likely to pick a scapegoat and punish one while reinforcing bad policies. I do not doubt this because it is exactly what they did with me. They even told me so when I questioned the investigation (I really did not understand it, a huge problem for an intelligent, brain damaged, PTSD-style memory returning, manic altered mess of a person). "It is not likely going to help you but it will help other patients." they told me.
Not true, not fair. If they refuse to even apologize and are claiming others and themselves will benefit from my misfortune but I will be expected to take all the fall, blame, pain, bills, expense than I do not trust them at all. Not a bit. It is a farce and fraud.
Yet, what can I do?  Just to be heard I am going to have to make my voice big. I will have to start advertising and soliciting the whole thing, basically marketing my mental deficiencies to the world in an effort to win enough support so they will listen. I have to prove to the world I am worth saving... Those are big shoes to fill and I have had to fight so damn hard just to believe it myself.
And To go after them, the multiple mistakes that doctors I cared about made could jeopardize their careers.
Yet they absolutely deserve it. But if they were following protocol then this either, again, reinforces bad policies or they will become the scapegoats. I am not okay with either. They need to learn, but they should not be too harshly punished as individuals. And yet, maybe they should be, because this has been a ridiculous journey, insane in so many ways, and them being the insane.
For example: I have talked with the police officer who responded to the call. He felt they should not have called, he's explanation to me is that they were trying to pass the buck. He is sorry to have traumatized my son.
My new psychiatric PA was surprised they called also. She said if I told them I was not in danger and not an immediate threat to myself their was no reason to call. I also know this rule and I had definitely told her that. The conversation ended with me explaining that I only had 20 minutes before work and I needed to get my head straight and talking to her was not helping. Obviously I had every intention of going to work, not harming myself.
And still, I can tell you, of this HUGE company that has many providers all over, I have not heard a thing from anyone as a follow up to that call. To me that suggests ulterior motives which do not include my or my families wellbeing. They do not wish to help but they will not hesitate to further traumatize.
The whole thing is corrupt, and who is to blame?  I won't have any say on who takes the fall and how hard they choose to throw them down, if they do in fact decide that.
So circles...
frustrating bullshit harm
I did not want to hire a lawyer. Still don't, but I am begining to see, I may just need to live up to their expectation... When in Rome...
What a messed up system.

Lucky

my doodle. I'm pretty sure I didn't plagiarize the words so I even signed it :)

I'm not sure who actually reads this blog, but thank you. Thank you for reading me. Especially to Bob. He will occasionally check in with me and give me feedback and I both love and appreciate it.
Right now I feel tired. This journey of mine has been exhausting.
But I also feel very lucky.
I am so very lucky to be in a position where I don't have to work and I can spend time and energy on healing. My new neuropsychologist and psychiatric nurse practitioner both feel this is a good thing. "Take it slow," they say and I am so glad I can. But that's also kind of funny because of how fast my mind has been going. In circles, maybe, but still very fast. I am glad it has slowed.
I also feel very lucky to have found this new team. Beautiful young PA thanked me for trying to get better and for trying something new. That was funny to me. I had thanked her for helping me, the medication is helping me to feel alive again in ways that I was faded and fading from. She, in return, thanked me for trying to get better and I responded with "I had been this whole damn time" which she understood since we have had lengthy conversation on what brought me to her. She then said, "well then thank you for trying something new." That made me laugh.
I like her.
And I laughed for a few reasons, one, because I am not sure I have ever been thanked for trying something new. And I am very good at trying new things. It reminds me of my daughters comment, "Mom, the box can't handle you."
I am also very lucky because I have friends. Amazing friends. Not the kind that I hang out with everyday or even all that regularly, but good friends none-the-less.
Yesterday I had a conversation with one such friend and she talked about my brain healing and getting myself back. I wasn't quite sure how to explain that I do not really want my old self back, because the reality is that old self was never quite good enough. I hadn't quite figured out enough tricks to working with my brain. Also there is the unfortunate reality that potentially comes with every injury and/or trauma, and that is you will never be the same. You may have to accept a new norm. She understood, but then reminded me of the me she was referring to.
Oh yeah... I love that me and I love that she remembers that me. The adventurous fun me, she called it. Oh, yeah again, that me, the one that always had big dreams and ideas that were too big for my britches but I would often try to pull off anyway. The me that her kids would randomly miss.
That me.
That me is coming back.
And starting to dream again.
Starting to ponder the endless sea of possibilities ahead of me with a returning desire to set sail.
Ahhh
We also talked about my blog and my writing. She was glad I do it. She thinks it sounds more like me because it could help people. She feels if I pursue this whole writing thing I could help a lot of people. She has confidence in me, and to her that sounds more like me. This made me feel so happy. To be understood and even appreciated. Thank you friend.




Tuesday, September 3, 2019

To be or not to be, who gets to decide? IHC? Insurance Companies? Directors of Facilities? Patient Advocates? Dr. He, Dr. Concussion? Office Director who yelled at me?

As I have been processing today, specifically my conversation with Dr. She (I need to come up with a better name for her) I remembered some stuff.
First, part of my issue with the whole situation that transpired was that is was fairytale bullshit come to life. The feelings I was feeling were very real, exquisitely intense, and very profound and yet I did not entirely trust them. I trusted him. But then he fed those feelings with ambiguous words and phrases. Implied, but neither confirmed nor denied- One could claim: open to interpretation. What was I to believe and what was I to do with that?
My own personal bias is that romance is mostly a load of shit that Hollywood and maybe even Walt himself feeds us to get us to easily open our pocketbooks and pants. I think a lot of it is a conspiracy of men; feed women these fairytale fantasy's of fast and furious love that always results in happily ever after and getting her to drop her pants and hop in the sack is going to be a piece of cake. Create the culture of it and you'll be able to get any woman easily and quickly. After all she wants to be loved passionately. ... So it's a conspiracy that we are molested with in our youthful innocence. And boys are molested too. They think that is what they are supposed to do, get the girl in bed by any means possible or if they are feeling these very sexual attractions, it must be love.... blah blah, I could conspiracy on and on, but mostly, and likely because I am one of the very fortunate few who was not actually physically molested as a child, I can see through the bullshit and I know it is just that AND I know that men can control themselves and blah blah...
And I don't want to head down this rabbit hole because I find it infuriating how many girls are molested as children, or raped as teens. I am mind blown again and again. and while I had some shitty youthful experiences I am extremely grateful I do not have that one in my bag of buried skeletons.
But my point is that I refuse to buy into that fairytale love, fantasy soulmate shit, and yet somehow I still do... and there I was in the thick of it, like I had never been before...
and in my misinterpretation or miscommunication I was then left trying to hold up his world at the expense of mine, and I wasn't sure how to proceed with understanding what was really going on.

Dr. She pointed out that I recognized how the fairytale feedings had likely played into this scenario, and she agreed that they likely had. I felt nauseous with myself and I want to deny it, even though I know better.
And the stupid thing is, that is the story I was more inclined to accept as it was fertilized by their bullshit of denial, ass-covering, and gaslighting. It was something similar to the common problem of children being labeled as "bad" or some other negative label by a teacher or parent and then they are stuck with carrying it and the label following them throughout the rest of their school life as the teachers spread and pass this lemming judgement on. The child then, finding no way out, eventually relents, embraces the label because they cannot seem to shake it, and starts purposefully living up to the expectations placed on them. It happens ALL THE TIME and its not fair to those kids. The person in power has them labeled and has stopped seeing them. Then the child starts believing they are bad and so therefore that is how they should continue to behave. It's so funny how there acceptance of this label can actually be evidence of their desire to conform and be accepted. Even evidence of their goodness.
Again, I could philosophize about this forever...
but ultimately I chose to buy into the fairytale fantasy more often then the IHC advocates, directors, and staff who were simply labeling me a liability and "not worth our time." Can you blame me? Especially amidst the intensity of emotions and rejection that happened. Can you blame me for wanting to believe it was a forbidden love that was the problem over an innately flawed and unsalvageable me?
One thing I can say is that initially I was fully willing to take the fall and accept full responsibility for my "misinterpretation" of the situation and conversations that led me to believe that dear Perri Cheri had in fact developed romantic feelings. I knew that he implied them and I knew that he had definitely lost objectivity, but I also perceived myself as a challenge, and indeed I may be. I could accept then that I had brought it onto myself.
But I should not be taking the entirety of responsibility in the mistakes made, especially when and as I kept asking for clarification, they not only refused that potential and reason for misinterpretation, but also started playing avoid-the-liability games with me.
I was fully prepared to face the embarrassment and shame of the situation because this is not new to me and it was so important to me to be able to understand what I was doing wrong and learn how to fix me, -the me that has been rejected like this before, the me that has frightened people away before, the me that I was thinking was likely tied to some of the problems my brain had created unknowingly in it's initial rather unassisted recovery from TBI...- I would have taken the fall for those mistakes and I did, but the perpetuation of harm and the denials of any wrongdoing or mistakes on their part, the unwillingness to even follow through with the help they had offered AND help they were legally and ethically obligated to follow through on, I am not willing to take the blame for.
And once again a main point that I remembered and realized is why I so desperately needed them to talk with me and to allow me the opportunity to clear this mistake up: It was a repeat of so many patterns and of so many misconceptions of me that, without clearing up, absolutely confirmed all the negatives, all my failings and shortcomings, AND they were telling me I was not worth there time, I was not worth saving and/or I was unsalvageable; the professionals, the experts.
I have had to be pretty damned determined to prove to myself that they are wrong.
Aaaahhh thus the blog. thus the obsessive writing and processing, thus the determination to turn this suffering into something meaningful. It has to be. Or I am not.
And if I am not
then what?

Wars and Rumors of Wars

I just got home from the appointment with new neuropsychologist.
I am tired.
My head is tired.
It is so tired of trying to work this out.
Dr. She is right, they caused harm and I need to move on from this so I can start putting the pieces of me back together. She does not care about the intentions. She does not care about the motives they way I do. She does not need to. That is very lucky and also why I am there. She just cares about what they said and did and how it caused harm to me.
I care about intention and feel like I have to understand that because I want to rely on that to help me decide how to proceed and handle this. Initially I was like, "Yeah, you screwed up, but I don't want anyone to get in trouble even though I don't fully understand why or care why you screwed up, I just want help figuring out what is going on with my head and why." And I was trying to proceed while also trying to protect the guilty-position-of-power party. (much to my detriment)
As it progressed from me trying to understand and get the help I needed, to standing up for myself, to outright fighting for my life, I also progressed in my need to understand intent.
I think this is probably because I don't want to hurt anyone and I think individually and ultimately they are all likely [mostly] good people that made mistakes. But these mistakes have come at a very high price to me as they proceeded in their denials of making any and avoiding responsibility.
My tired brain and breaking family reminds me of this.
And I know these mistakes need to be acknowledged and they had a responsibility to me that they failed to fulfill again and again thus perpetuating harm. I know these mistakes are not okay and not fair and I know it has been my OWN sheer determination to minimize damage, come out okay, and make the best of it that has kept me going. I mistakenly had attributed some of that to dear Dr. Cheri, but that was likely due to his abandonment while I was in the thick of transference.
I am able to own my success now, and that is good, but, I assure you, it has taken so much more determination than you may ever be able to comprehend. I have a few advantages, namely previous head injury -I have been through so much of this before. The mistakes of other misunderstanding and misdiagnosing, so I have an advantage but I do not think everyone would fair so well...
For that I am not okay with just letting bygones be bygones, and for the expense of this and the burden on my family.
Viktor Frankl would understand; the best of them did not make it out alive, he says. And with out others fighting to end the massive insanity that was killing innocent people and plaguing the world, he would not have come out alive either.
I cannot compare my suffering to theirs but I can tell you, if I were not a fighter and if I did not have that sheer determination to survive, I would not have made it through this.
...Yet I am not out of the woods
I am so tired of trying to solve.... and the reason intentions has become an obsession in solving is likely much like in any war: we don't want to fight a war unless we are sure the other side really deserves the same level of pain and punishment they are inflicting. Intention seems to be the easiest way to judge that. And I have already said, I don't want to be the judge, but that is the position I have been put in, so I am looking for the lifting of the burden of conscience because I do not want to feel responsible in anyway for the upholding of rules I don't necessarily agree with that could create a high cost to the individuals, when it is the collective and the institution that ultimately failed but will likely get off scotch free at a high cost to one or two individuals. Or they will gain more ground and win this battle further perpetuating their false sense of rightness that is harming others.
...and my brain is tired.