Ride On

 Learning to listen to your body can be challenging. 

Today my body is insisting it is tired and it wants to sleep. More. But I don't want to and I have a lot I need to do. Which may actually be why it is saying it is tired. It's feeling a bit overwhelmed by all that needs to be done and all the people that need my thoughts and concerns, and thus I am spent before I even begin. 

Or is it because I spent a lot of time out working in the sun yesterday? Something that tends to wear most people out.

Or is it because I have not taken Adderall today? 

And that is an annoying aspect of my new disabilities. I feel like I need a drug to manage every aspect of homeostasis. I need lexapro to keep me out of the lows and anxiety, I need seroguel to keep me from going to high, having too much energy and becoming too big for my body and to make it so I can sleep, and then I need adderral to help me wake up, focus, and keep going in the day... That is strange. 

But I still feel very lucky that these medications work as well as they do for me and my mixed up body. I am grateful that I can and do function so well. 

On a somewhat related note, I got to ride that trail again with my husband. This time, although it was the same time of day, I did not experience the brain short-circuiting like I did last time. That was nice and I am glad that I can build up some tolerance. Of course my day before the ride looked quite a bit different then the day before the previous ride, but even still, I rode better and never felt like I was over-running my brains headlights. 

So life is good and that which I persist in doing is becoming easier. Not that the tasks themselves have changed but that my ability to do so is increasing and that is a good feeling. 

The Sound of Silence

"Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
No one dared
Disturb the sound of silence

"Fools" said I, "You do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming

And the sign said, "The words of the prophets
Are written on the subway walls
And tenement halls
And whispered in the sounds of silence"

            -Paul Simon

The Sound of Silence 

They capitalize on peoples tragedies and they do it by further abusing the vulnerable victims who continue to go unheard when their voices most need to be heard- and so the cancer grows.  

Today I just need a moment to cry

and you and I, 

we both know why

my tears fall 

for the sound of silence... 

The Ups and Downs of the Downs and Ups

 So much too do and so little time that sometimes it is overwhelming. Right now I am not so much overwhelmed by all I have to do as I am by how voiceless and powerless so many people, including myself, are. 

Recently I have been trying to help a sister-in-law who is going through her own legal battles and who has been a victim far too many times and by the "systems" who are supposed to protect victims. My heart hurts for her and where she feels beat down by how voiceless and powerless she has been, I feel angry and I want to fight for her. The thing is she tries so hard not to be a victim and has done and been all that she is expected by society to by denouncing that she is a victim, but this has not helped her and she continues to be beat down by people who don't understand what it is like to be a victim.  

The thing is, it SUCKS to be a victim. And it is an unfair expectation that you are not supposed to be a victim when you are a victim. You are somehow supposed to be proud, brave, confident, and all kinds of bold when you are small, beat down, powerless, and being vilified for your efforts to stand up and speak out while being expected to stand up and speak out. It is sooo much more complicated than people know to not be a victim. 

Take me for example. Clearly I DO NOT make a good victim. I don't succumb to manipulations easily, I talk WAY too much, am too honest and open, and I feel an obligation to warn and protect others. I am a whistle blower when it is needed and I refuse to accept the degradation no matter how bad, how long it has been going on, or to the level it progresses, BUT that still isn't fixing anything and I continue to be victimized in many ways for my efforts, openness and honestly -which pisses me off more while simultaneously annoying others who will accuse one of "always claiming they are the victim" when I try again to point it out and try to end the victimization of myself and others... What a conundrum. Especially when I can relate to all sides. But that is all I want to write out about that today. My frustration is not resolved but also not feeling super productive right now; so I am going to pack it away and tackle it, if I can, on another day in some other way.

Because now I want to write about this: 

I am sorry the picture is not better but I think it demonstrates pretty well what we (myself, my husband and my son) were doing and and how we got there.

For my birthday this year my husband bought me a Sur Ron, which is a lightweight electric dirt bike. I have always wanted to ride motorcycles the way my husband does and has been doing since he was tiny. Now I have had a Honda 150 for a few years, but I have so little experience and I am starting much older. These disadvantages have made the Honda feel like too much bike for me and I am far from skilled enough to take it on the single track trails my husband prefers. Additionally, if I make a mistake on the Honda it is hard to recover from since it weighs quite a bit more than I do. The Sur Ron on the other hand, weighs less than I do and doesn't have gears I have to worry about (which I am not super proud of- but have to admit- does make riding easier for me most of the time), so it is much easier to recover from if I do make a mistake. Overall I find this little bike quite fun and, even though it is said, "it doesn't replace your dirt bike," for me it does and I am okay with that. 

But this little rambling is not meant to be a Sur Ron review, rather I actually wanted to talk about the ride from the picture and how my TBI effected it 

...because I find it interesting. 

Since I am such an inexperienced rider and still learning the nuances of my new bike, I feel like Madonna 1984, every time I ride ("Like Virgin") until I start to settle in again. Because I am so new and still learning it is more cognitively demanding than it would be for someone like my husband who has been riding since he was in elementary school. 

And

I have that damage to my brain from those TBI's to contend with which can wear me out a bit quicker and cause some interesting phenomena. One thing I found interesting was how depleting all the depth and complexity of the mountain terrain was. The visual stimulation that was moving past and beneath me at higher speeds than is normal for a body to move at in such terrain was really cool but also a huge draw on my cognitive resources and I could feel it. Yet, as the sun set and daylight began to fade so did the colors, depth and distant that I could see and I was surprised how noticeable the effects were on my cognitive energies; riding in the fading light was not nearly as cognitively depleting. 

However, by that time, I was truly and genuinely cognitively fatigued and I had to keep that in the forefront of my thoughts because I didn't feel tired physically. Now maybe you think I am limiting myself too much or making up excuses etc for my lack of speed and skill but I assure you I am not. The effects of TBI are, and genuinely can be, very odd. If they are not recognized for what they are there is a lot of potential for all kinds of trouble in so many aspects of your life, so self awareness is absolutely crucial after your brain has been altered. Plus if you do pay attention and utilize self awareness it can be quite fascinating to analyze what is happening as it happens. Which is precisely what I was doing, and needed to, when my brain started shorting on the ride. 

"Shorting?" You ask. 

I think this is quite a common phenomenon that many experience when they are tired. Your brain just kind of misses what's going on for a moment. It happens a lot to kids in school who are trying to pay attention for developmentally inappropriate lengths of time as they try to learn all the new material they are expected to learn so quickly. 

But for me, while riding, it felt more like overdriving your headlights; a phenomenon that does not seem to happen as much anymore, likely due to technology advancements as well as infrastructure improvements that have decreased opportunities to drive in dark conditions on those long, lonely, and curvy highways. Now according to many online definitions, overdriving your headlights means not being able to stop inside the illuminated area ahead of you when you are driving in dark conditions. But by my definition, and what I remember experiencing in my younger days, overdriving your headlights happens when you are driving, maybe faster than you should and usually around a turn, and you actually overdrive the illuminated area ahead and you are, for a moment, driving in the dark while the light is being cast in a direction you are not driving. I don't think I did this all that often and generally speaking, it's more likely to happen in adverse weather conditions, like fog and rain, when the light being cast is dispersed by the reflective conditions you are driving through. Always, overdriving your headlights, is a huge warning sign that you need to slow down. 

And that is what it was like for my brain on the Sur Ron that evening. I had to slow down because I would experience a blank moment that indicated my brain was not totally keeping up with my speed and circumstances. Very interesting, sometimes, the way our injured brains behave. 

Sometimes it makes me a bit sad and frustrated that I cannot keep up with what I used to be able to keep up with but at the same time, I am extremely grateful to have the brain that I have and the irony of these types of anomalies that make me better able to keep up with so many other things and that normal brains often have no idea how to keep up with. 

And so I make the best of it and choose to enjoy and utilize my observations as I hope others may be able to do as well. 

 

The Emperor's New Clothes

"Despite various publications of results where hand washing reduced mortality to below 1%, Semmelweis's observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. He could offer no acceptable scientific explanation for his findings, and some doctors were offended at the suggestion that they should wash their hands and mocked him for it. In 1865, the increasingly outspoken Semmelweis supposedly suffered a nervous breakdown and was committed to an asylum by his colleagues. In the asylum he was beaten by the guards. He died 14 days later from a gangrenous wound on his right hand that may have been caused by the beating." https://en.wikipedia.org/wiki/Ignaz_Semmelweis

The solution of washing hands seems so common sense to us now yet Ignaz Semmelweis was ostracized, vilified and treated in all manner of degrading ways; this article only touches on it, but in reality he endured mistreatment for his views and opinions for years even though his opinion was based on years of gathered evidence, investigation, and practice. It is truly heartbreaking how this man, whose work and outspoken determination literally saved countless lives and saved even more from serious illness and the effects of that, was treated for his efforts.

His story runs through my head often and I feel I can relate when I explain to people the very obvious problems and some very simple solutions to the medical malpractice model and to some of the various ways mental illnesses, which are also very real, serious and often dangerous illnesses, are handled, perceived and addressed.

I find inspiration from Semmelweis when I feel beat down by for trying.

Truly it's hard to be voiceless and powerless and then mistreated for trying to educate others when you know very powerful truths that could save lives and livelihood and could relieve a lot of stress on a lot of people.

I was able to talk to a person at the Utah Bar today and she told me, "you may be caring too much about what is in the best interest of all parties to your detriment."

And that about summarizes it.

Cries for Help

 Life is so strange. The twists and turns can take you places and change you in ways you never imagined possible. 

And so it is for me and my family.

Right now I feel sad. Tears are starting to well. And though it is nice that this is a greatly reduced occurrence and these tears are appropriate, I wish they didn't need to be...

The thing about having been insane and back, is that it makes medically relevant mental health problems a lot easier to spot and identify in others. It also makes it easier to understand their plights and whys. 

And the thing that is tearing at me now is seeing and knowing what happens to people whose illnesses go undiagnosed and untreated. Their distorted thinking only grows worse with age and ostracism and they end of up being so "crazy" and "weird" that they become intolerable, they can be scary to others and/or, depending on how they are treated and what is fed in their little head, some can become quite dangerous. 

But if they had received medical intervention and help and support early on this could have been prevented and they could be very healthy and valuable contributors to society. 

-"It's also a gift," says my sister-in-law who is nothing short of a saint and whom I admire and look up to in so many ways and for so many reasons -but this comment stirs a surprising anger in me. She is referring to bipolar and the highs associated. I have to quickly access my rising emotions. I have to identify why I am feeling this and what to do about it so I don't inadvertently injure another relationship with a reaction that is elevated beyond what is considered normal. Fortunately this sister-in-law has a lot of experience with people with mental illness and she still loves and cherishes those in her life with said "gifts" so I know I am relatively safe expressing my feelings on the matter. 

"It's not a gift, its a curse," I think although I recognize what she means and that there are elements that seem very gift like. But in truth and reality their is only a very brief magical moment when people are amazed and impressed by you and your gifts. Prior you are no one and insignificant and after you are crazy, intolerable, weird, scary, unreliable, and so many unfair labels that people do not easily remove from you or forgive you for if and when you are able to recover. And the "gift" of it is easily lost with and into the chaos and insanity you are progressing into. The only way "the gift" is utilizable is if the person is able to get help maintaining a more homeostatic sanity balance that is necessary to achieve anything. The "gift" is moot without stability. 

Although there is another way, but that requires the assistance of some other person, business, and/or entity exploiting it. Unfortunately that exploitation far too often comes at such a high cost to the tormented yet gifted creator who will be progressively abandoned and ostracized as the "gift" progressively becomes consumed by the reality of the their very real and very critical medical condition of the "gifted"...

... Do you understand where I am going with this and what I am saying? Do you understand where the anger is coming from? 

When a person has a mental illness they need treatment, they need help and they need to go through all of the phases of grief and acceptance that a person needs to go through when they are diagnosed with any serious illness. But rarely are they given this chance. 

When people are stigmatized, treated degradingly and punitively and discriminated against for having and treating an illness, they are less likely to accept they have the illness, less likely to get appropriate help for it and throughout it, and their illness is more likely to progress and cause more significant negative consequences. 

It breaks my heart to see so many sad situations, frustrated and hurting people who are now so lost in their altered reality that it is impossible to help them and get through to them all because they had to burry their story and will not accept the degradation they have received for having a "mental illness. " Ironically many would affected and their family members would rather accept that it is a character flaw that then a mental illness. 

It breaks my heart that so many were not diagnosed early because their parents did not want them to be "labelled" or they didn't want to be "labeled" for having a kid with such a label. Like my ex-bro-in-law who very likely has undiagnosed autism and has progressed so poorly that his own mom and siblings don't want to have anything to so with him and he is becoming an increasing danger and a threat to others. 

It is hurting my heart deeply right now because I know too many and I see too much suffering for it...

So, I'll let the tears fall for a minute and then get back to fighting for these things to change. 

How do you sleep at night?

 They know it. And they are likely following me here to see if they are succeeding in waiting me out. Waiting to see if I can follow through with this very difficult task of filing a claim against them.

They know as I review all the bullshit they put me through it will trigger and exhaust. 

They know it will cause a physical burden to my body and that in reality I am not likely physically capable of fighting this fight long enough to outlast them and all of their resources 

and their fully functional brains....

And I know it to 

and it's disgusting. 

So I will not succumb until my body fails me and I can no longer stand up and take their beatings every time I try to speak out and seek the resolution the medical industry needs and that other patients deserve as well....

SO if my vulnerabilities amuse you and feed your egos, fine. Be fed knowing that you will eventually succeed in burning me down and burning me out 

But someday it will all catch up to you and you will be held accountable for it. 

You make me sick.

literally. 

But, I now understand that that is literally what you want. 

So I'll keep fighting 

to end your sick and twisted games. 

And Ms. Attorney, You are such a liar! Straight up lies. And so brazen and confident in your presenting  them that even I questioned myself... 

But, I have so much of it in writing 

so there is that. 

You're Somebody Else

 People tend to talk about what is going on in their lives, what they are going or currently working on and towards, their interests etc.

These are things my kids talk about. 

That is what I talk about too.

To be clear, I am careful not to share too much with my kids about all this. They know what I am doing and they wholeheartedly support it. In fact my son has more then once stood up for me to people questioning my decision to pursue a legal medical malpractice claim. He even told his grandpa that I have to do this. Sometimes my kids surprise me. 

So yesterday I shared with my son one of the poems I found on this here blog as I was searching for dates and details to include in my claim against IHC.  It was one I figured my kids might appreciate and my son did. 

Then he shared with me and experience he had recently had. He told me he is doing well and has really moved past all of that trauma so it took him by surprise when he was very affected by a song that came on at his work. He said it took right back to all of that and it made him really emotional. He shared the song with me: Flora Cash: You're Somebody Else

It made me cry as I felt what he and my daughter had to endure and how profoundly the whole mess had affected him. 

It made me realize just how much my son really loved and appreciated me and how much he still does. I was a really good mom before all of this and he lost that for a long time, almost lost it completely and he knows it; whether we talk about it or not, he knows it. 

It is no wonder he made the intimidating Karma call to the discriminating professor that triggered a med-mal-related post traumatic stress response in me... It's no surprise a kid who had been through what my son had would react to that situation in such away. 

Whether we talk about it or not, my kids know because they had to live through it too.  

So occasionally we talk about it and that seems to work best for all of us.

Talk is cheap. Avoidance is not.