Validated

Yesterday I had my post op appointment for my ankle. My beautiful surgeon got called into an emergency surgery so I saw his assistant. She has been assisting in these surgeries for a very long time; part of that time in the military. She was happy to inform me that my doc was one of the best. I always like to hear that.
When she saw me she remembered my surgery right away -didn't even have to consulate the report to remember.
"Oh, I remember you," she says,
"you were the worst ever!"
No, she did not say that, it was "yours was the worst I have ever seen."
"And the surgeons," she tells me (or least she was pretty sure he had also said it was the worst he had seen, definitely one of, if not the confirmed worst)
She explains how bad it was and how it must have been that way for some time.
"about a year and I half?" I ask.
"Yeah, that is a long time" she confirms.
She explains that there was even a second tear that the MRI didn't pick up because of how bad the tendonitis was.
Remember yesterdays post where I mentioned how all three doctors I saw about it were surprised by strength and my stability?
She stopped herself as tears started to well up in my eyes. "Oh no, what did I say wrong?" she asks.
"Nothing"  I try to explain.
It is validating
and I am glad my husband is there to hear it.
It's Validating for so many reasons and yet so painful also.
It is symbolic and parallel to what is going on with me...
It is painful because I know it could mean some bad things that I did not realize it was so bad. That I did not feel enough pain to get me in sooner.
...and I had just seen the wrist doctor in the same office who suggested I might want to consult with a neurologist about the weird shaking in my left hand.
Maybe I have been working a lot harder than I give myself credit for to not be a burden and a complainer. To be independent and strong.
The overlooking and neglect of it is very much tied to and paralleling TBI to me... and maybe physiologically more than I know. Which honestly scares me.
"Even if I were open to that I'd have to be willing to take that one" he said at one point when I was trying to convince him that I was worth investing his time in. I was and still am not entirely sure what he thought I was asking him to be open to. I am not entirely sure I knew or know what I was asking him to be open to... but what I heard was that he was not willing to take me on because he knew too well the type of burden I might be. It cut me deeply but I did not show it and I have tried to ignore it, especially because logically I know I don't really know what he meant by that..

But I know that I am damaged. I have brain damage. And maybe it is worse than I know. It is a fear I think I really hide and have hidden well. I am afraid of aging and my life feels so much shorter because I know I am more likely to have problems due to it as I age... sometimes I fear that I feel it already. It is part of why the car accident concussion was so traumatic. I don't feel like I can afford it.
But that is fear. and maybe, hopefully that is all it is.
It is my bigger fear manifesting in my ankle. And it is traumatic too because the ankle got overlooked because the mTBI was so much the bigger problem. I needed to do everything I could to take care of that one. And ironically, the exercise and dealing with one thing at a time that were prescribed by the head doctors was contributing to the ankle problem.
These invisible injuries can be so complex.
And I am learning so dang much about myself when I thought I had me figured out. I thought it was everyone else I needed to figure out, because I am introspective and I tend to analyze myself first and what I can do and what my part is or was. I try to fix me first.
...and I know I need to stop trying to fix the broken parts of me by myself, yet, her I am.
I thought I knew how to ask for help. I thought I knew how to say no to people.
...ahh life. The more we learn the less we know.

how to handle the perfect storm

I find myself wondering about perfect storms and how they have the ability to reshape the world. Through them humanity at its worst can come out OR humanity at its best can come out. It all depends on how the "victims" of the storm choose to handle it.
They can help each other to rebuild or they can fight for their own survival.
In rebuilding they can improve upon or completely reshape what had been destroyed.
Who will you be?

I also find myself wondering about how we perpetuate our own cycles of neglect and abuse. How do we break those cycles? We may think we have, only to find ourself there once again... was it them or is it me this time? and often the abused becomes the abuser or the neglected becomes the neglector.
and I don't want to be either.

The perfect storm

I think that I might be the perfect storm.
This will be a disjointed post of a whole lot of stuff rattling in my brain that I just want to get out quickly, so I can move on and be "more productive"
?what does that really mean anyway?
I get my stitches out today; post op on my ankle. "Will you have a scare?" my daughter asked.
" I better!" I reply. 

Why?
to me scars are the tattoos of adventure
and I think I want the scar to show because I have so many injuries that do not visibly show so people are not as careful with me as I sometimes may need them to be.
I think this is true for most people.

With my ankle I have learned:

1.  some seemingly small injuries can become big problems if they are ignored or overlooked. I did not actually ignore this injury. I had my chiropractor adjusting it, I had mentioned it to doctors, but merely mentioned it, and it was overlooked because the head was much more pressing. I also tried to build it back carefully thinking it was just a sprain, and being a runner I knew plenty of ankle strengthening exercises so I had (according to all three orthopedic surgeons who looked at it) really good stability for the injury. But it was overlooked, misdiagnosed by me at the very beginning when it maybe could have healed without surgery, had I been booted. 
2. When your head is a mess you overlook many things. And you behave strange
3. Many variables effect why things like this get missed 
4. It does not mean every little thing needs to be addressed immediately, but it suggests that balance is tricky (especially with a rattled/broken brain and injured ankle :)
5. I got way better at riding switch (using your non dominant food as your lead while snowboarding) because of it; good things can come from injuries
6. sometimes things need to get worse and you have to make decisions to actually allow or make it worse in order for real healing, improvement, and/or growth to happen.

so the ankle is recovering in my eternity of no weight bearing.

I do not know what to do with myself when I grow up again. 

that is tricky

 today I was struggling to get out of bed and face my fears and continue to cause those problems I need to cause in order to keep my other healing and growth going... In order to face reality and break the cycles of fantasy and my broken heart. 

My body wanted to just keep sleeping away my troubled thoughts. But I knew by doing so I would be feeding a very negative and extremely counterproductive sleeping pattern/ routine that becomes harder and harder to break the longer you let it go. It is hard to force yourself to get out of bed when you have such limited mobility, nothing that you have too do, and crap you don't want to face. So I turned on the TV.  I chose to do this and allowed myself to do this, to help tease my brain and body out of sleep and bed. It was a little thing, but it was doing something. 

Turned out to be a great motivator as I "stuck around" to hear the story of a the Maslin's on Good Morning America https://www.today.com/video/how-a-married-couple-rebuilt-their-lives-after-a-tragic-crime-1455671875774  

There are so many great lessons learned in this short clip. And I absolutely love how Abby explains that at the beginning she thought this was a journey about brain injury but she came to realize that this was really a "journey and a story of the human struggle."

Brain injuries and all troubles have a bright side. Mania can me fun, depression can give you depth and complexity, neuroplasticity helps you make connections that other people don't even know exist, anxiety can give you drive, and it can keep you safe, guilt can cause you to think before you act and to think of others... Obviously too much of these is no bueno, but they are not all bad. 

Maybe this is why I liked this article so much:

https://jimkwik.com/kwik-brain-095-how-to-get-out-of-your-own-way-with-todd-herman/

I love the idea of utilizing our own alter egos. I like how they embrace the idea that our identity is constantly changing. Identity is fluid and dynamic not static and unchangeable. 

I love this guy Jim Kwik's story. My sister shared a link to his story, I'll share the link on it's own blog entry because it deserves it's own attention. 

But the point I will end on here is that life is so very strange and timing and things may or may not actually be "for a reason," it may all just be coincidence but sometimes I doubt it.

And other times I think it is just plain helpful and exciting to find so many things aligning that seem to point us in certain directions. 

Other times I think it can be very healthy to give it all a reason and meaning. It can keep life, fun, interesting and meaningful. 

I don't always understand the reasons, and maybe my brain takes things a bit too far. Maybe at times I have a hard time distinguishing reality from fantasy but maybe I am not so far off and maybe imagination is an excellent tool for not only surviving but thriving. :)

Maybe fantasy is the reality that makes life worth living. 

"I love my beautiful crazy life." I tell the mountains as I remembered my blog I had forgotten for years amidst a flooding or memories that had been suppressed, when new me was trying to process the pain and strength of my heart where JP had taken root. 

...Yep, I really love JP, it's one of the best lifts at our resort 

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?

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.

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)