Friday, March 2, 2018

Dilemmas, Decisions and Letting Go

Image result for decisions

The above image representing the "heart" and the "brain" is popularly used to represent a difficult "decision" or internal dilemma. The idea is that what we "feel" we associate with the "heart" - you know, all that "gut instinct" stuff (an image of your internal organs makes for a decidedly less compelling image though) - and what we think is represented by the "brain" - you know, all that "higher order" cognitive stuff. The sense is that these two are at odds with each other thus "we" (whatever "we" are) feel "torn". 

It is, of course, nothing like that though we do "feel" a lot of what we experience in these decision dilemmas as pangs in the heart and gut. This is stress response system related hormones charging about and kicking up a fuss here and there, however. What's really going on is a "war of the minds"; all kinds of brain regions battling for control in this "decision making" process that it's ostensibly well designed to do. Memory circuitry is of course much involved and that's very much rooted in the limbic region. Our more "passionate" selves can also more or less be found here and in the brain stem below that (it is in this area where all manner  of "brain hijacking" hormones get released and roar around, not to mention pleasure circuit neurotransmitters and so on). Way up in the brain, right behind our foreheads lies the vaunted homo sapien pre-frontal cortex, whose often hopeless task is to rein in all that merry making going on in your limbic region and brain stem (think doughnut vs diet as a simple but classic example). This is what is represented by the "brain" in the image above. 

It's vastly more involved than that, however, with dizzying numbers of neuronal networks connected by "wiring" so astronomically complex that no one could say with any certainty how the whole tangle connects or not all attempting to respond to this "make a decision" command that has come from somewhere (we'd like to think it is "us" but I'm afraid it's not).

Nobody likes to imagine all that (because so few actually can) so our endearing "heart" vs "brain" image will have to do. 

In any case, dear little moi is facing a dilemma and has to make some significant decisions. The pieces of the puzzle are complex, each seeped with enormous amount of emotion, each with great life changing effects. Add to an already complex puzzle a very interesting piece of recent news regarding "the troubles" of my own particular noggin.  

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Regular readers may be aware that the disorder I live with is bipolar type I. I have never really completely written about all of my psychiatric history and the severe symptoms I experienced related to bipolar. I am not about to bore my dear readers and followers with that now. I must, however, touch on them briefly. 

As I have alluded to in various posts here and there, starting roughly in summer 2008 through to spring 2014 I experienced some of the most extreme mental and behavioural symptoms that might fall along the bipolar spectrum. As I hope regular readers will by now know, the vast majority of help available to me in the mental health care system and through the traditional pharmacological psychiatric treatment model not only couldn't control it, I got worse. Which is why five years ago I took up all the study that now goes into this blog; the neuroscience of human behaviour and mind phenomenon.

Through my study of everything to do with bipolar from the best sources I could find and through looking at dozens and dozens of cases and talking with or listening to dozens of people diagnosed as bipolar and carefully analyzing all of what I experienced, it was obvious that my case was at the extreme edges of an already fairly extreme mental health disorder (many people in the various fields of study and treating bipolar consider it the most difficult of all psychiatric disorders).

To think of my study of human behaviour and mind phenomenon in more detail, I wanted to look into every single symptom of the most difficult disorders which caused the most mental health and life impacts such as major depressive disorder, bipolar disorder, schizophrenia and major anxiety disorder and track down the neuroscience and neurobiology of each and every one of them, along with every possible genetic and environmental factor. If this sounds like a daunting endeavor, it is. (and to put my personal challenges into perspective, at various points over that six year span I would have met diagnostic criteria to be diagnosed with all four of those disorders). 

Not only that, I wanted to know how people could overcome all those symptoms without drugs.  

Then I set out to prove it could be done. One by one I ruthlessly tracked down each symptom and worked on it. One by one I tamed or slew them. 

Yet various things still persisted. 

One, I discovered in the early months of 2014, was mitochondrial disease. This affects the ability of every single cell in your body and brain to effectively produce energy. It was not hard to see that a great number of the common most difficult symptoms could be related to mitochondrial dysfunction. 

"Haha!", I thought, "finally I know the final piece of the puzzle. Now I've got this son of a bitch by the tail!"

So I set out to learn everything there was to know about that and deal with it as best I could.

One by one I tracked down anything and everything that could be involved in worsening mitochondrial disease and how to better manage energy. One by one of these I either dealt with myself or was graciously helped in solving all the environmental and living circumstances that could worsen it. In February 2016 it became possible for me to live in a large suite on my own that was utterly ideal for the needs of Mrs Bean and myself. 

I thought I was finally on my way and went at all my ambitions with great and joyous gusto in the first four months after moving in.  

Then came June. The all encompassing mental and physical fatigue struck again with a vengeance. It was as bad as ever. We're talking complete brain fog, catatonic states, being just able to get by in taking care of day to day physical needs. 

There was one more factor greatly lacking in my life and in early July of 2017 I made a big decision; I contacted a woman I knew was a great admirer of mine with whom I'd previously explored the possibility of being together (she had been a long time follower of Taming the Polar Bears, the Bean-mobile adventures, etc). Her feelings had not changed and so I decided to propose to her. She happily accepted. 

Oh joy! Love! Partnership! A loving, supportive partner who got everything I did with the Polar Bears and how I lived my life! 

What greater tonic could there be! 

Yet still various things persisted. And began to worsen. 

I can assure you that few people on the planet are more self-aware of and work on themselves more than I do (and have so much to work on). It was August of 2017 that I began to notice symptoms in my head that I had not noticed before. 

I am very, very careful about symptoms we observe in ourselves. I am exceedingly aware and cautious of reading too much into them and jumping to conclusions. Various observable and/or experienced symptoms can mean many things. These, however, were very unusual. I'd experienced severe headaches most of my life, mostly the usual tension ones. These headaches were very different from those. They did not match migraine symptoms. As well, there was something different about "brain fog" episodes, something I'd never noticed before; very odd sensations throughout my skull and down into my face. I had no idea what to make of them and I knew an average GP wouldn't either so I just made note of them and carried on. 

I focused on my new relationship and all the bureaucratic bother involved in getting her to Canada. 

Yet the "new" symptoms persisted. And began to worsen. 

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It's nearly impossible to convey the love and passion and drive I had for studying neuroscience and anything and everything to do with the human brain and how that would affect behaviour. I won't recount that here but one of the areas I got greatly into (partially out of my love for neuroscience, partially out of my love for sports) was the newly emerged field of long term damage of and effects in later life of repeated concussions or head trauma early in life. This was an area where my two loves really merged and in fact it these two areas have to merge in order to even begin to understand the problem; for just about all information, data, case studies and so on are from athletes and sports, particularly high contact sports such as American football and ice hockey. I'd actually followed case studies and individual stories for at least ten years and when I got so deeply involved in neuroscience, I already had a pretty good body of understanding built up. 

What I saw from the neurological perspective and what was being found mortified me. I looked into it all very deeply among many different sources. Already having a solid grounding in so much about brain anatomy and the delicacy of the brain, I grasped it all very quickly and in depth. As much as I love both sports (football and hockey - I played both in my younger years), I could not conclude anything other than that it was very inadvisable to allow any child to play football as it's now taught in most schools and football programs across America and many in Canada. Brain damage can start very young and in every literal sense, be life altering and irreparable. 

This was all several years ago, and as I had so much other study on my plate, plus my own challenges and much else to focus on in writing for Taming the Polar Bears and managing all it was becoming, I moved on from studying concussion related neuroscience. 

In November of 2017 these new symptoms were worsening and becoming harder and harder to ignore. By chance I came across an article about concussions, post concussion syndrome and the long term effects of early life multiple concussions and head trauma. Lights of recognition lit up like a Christmas tree. It was staggering. The definitions of concussions, the symptoms experienced by many, many former and current athletes. Case studies and histories that I'd never seen in psychiatric disorders sounding like I could have been reading my own case history. 

For some days I began going back through my life from my teen years through the age of about forty-five. The first concussion came at age fifteen and was the most severe; I fell and struck my head on concrete. The last thing I remember was the sickening sound of skull meeting concrete. Then nothing. I'd been unconscious for at least an hour. Then began uncontrollable severe convulsions that lasted more than 24 hours. Back then we never knew what it was. Now I do. That was about as severe a concussion and symptoms as they get. 

There was another concussion playing hockey at around age sixteen. Again, full loss of consciousness and no memory of anything before or after (after getting up and "shaking it off", I played the rest of the game). 

Another severe concussion at age twenty in an industrial accident. Again, full loss of consciousness, convulsions and so on. I "shook it off" and went back to work the next day. 

Several more followed during my twenties. 

Another four or five came during my thirties and forties from motorcycle crashes and another industrial accident. 

The last one - in summer of 2006 - was when "everything began to change" for me and all my behavioural and personality changes along with mood and the most recent round of psychiatric disorder symptoms began (I had gone through them all before - particularly during my early to mid-thirties - but never anything like this).

All this time I've gone on the assumption that was all related to bipolar disorder and other comorbid conditions. 

But with everything I know about the brain, concussions and their damage plus the symptoms, it began to look more and more like all along I'd been dealing something much more than just bipolar. 

For some time I'd suspected that there had to be something else going on to make all my symptoms and what I experienced so much more strange and more intense than what you see in the vast majority of bipolar cases. It just didn't add up, it didn't make sense. I just could never put my finger on it. 

Now I could.

But I knew getting the kind of help I'd need would be very difficult. I knew this from my earlier study of concussions and long term effects in athletes. It's still a very new field. There's still lots of ignorance and denial, even - and perhaps especially so - in every field of practicing medicine. Very little is known about examining for it and diagnosing it. Most staff in hospitals only know about the effects of very recent concussions. The average GP is very poorly educated on it (this relates to the fact of how much all GPs get "trained" by pharmaceutical companies and reps and thus tend to ignore anything that falls outside of that narrow understanding). 

I wrestled with what to do. None of this is ever as clear cut or straight forward as you would imagine. 

Then, at the end of November, I met someone who found out about my story and wanted to makes something more with Taming the Polar Bears. He was a former businessman and web developer, he looked through my blog, found that so much of what I wrote matched his views on those who fall to the bottom of society, saw the worldwide popularity of it and wanted to partner up with me on taking it all to a new level. 

For a while this showed great promise and I poured a lot of energy into (though it the person and plans proved to not at all be viable)

Yet symptoms persisted. And worsened. And the periods of time of the worst of them lengthened. 

After one particularly unbearable 48 hour period, I went to the local ER to see what they could do. As I suspected - nothing. 

Finally I booked an appointment with my GP. This is more difficult than would appear as he is in my former town two hours away requiring a drive over the highway through hell during winter. My daughter ended up driving me (and naturally, through a raging snowstorm). 

My doctor and I have an unusually good relationship. He's young, progressive and was very empathetic to and sympathetic with all my homeless and living challenges of a few years ago. He also totally understood and respected my self directed approach to handling my bipolar disorder. Trust me, folks, a GP like this is pure gold. 

He asked what I was in to see him about and I told him what I suspected about long term concussion damage. "Well", he said, "you're a lucky man. I happen to one of the best doctors you'll meet in understanding all the latest about them". 

I'd prepared long detailed notes about my concussion history. I first described my symptoms; the unusual nature of the headaches, the other weird sensations I get in my head, the near endless throbbing pulsations, the dizzy spells, the brain fog, the periods of blurred vision. I got about a quarter of the way through describing my various concussions before he held up his hand. "That's all I need to hear", he said grimly. 

Tests need to be run to rule out a few other possibilities but he was very sure and unequivocal. 

He is almost certain we are looking at chronic trauma encephalopathy which is a fancy term for the unique type of brain degeneration that comes as a result of multiple untreated brain traumas earlier in life. Encephalopathy is a general term that means brain disease, damage, or malfunction, the specifics of which are notoriously hard to identify and apply to any one case. What is known is that the prognosis is not good. While many observable and experienced symptoms are similar, it should not be confused with Alzheimer's or Parkinson's.

So it turns out that all this time I've not only been dealing with arguably the most difficult psychiatric disorder there is and the crippling effects of mitochondrial dysfunction, but also CTE. 

Neither of these are curable. The mitochondrial disease I can sort of handle. I've gotten used to it. 

CTE is quite another matter, however. We are talking incurable and ravaging brain degeneration. It progressively gets harder and harder to deal with. The effects on the mind, behaviour, moods, cognition, memory - everything in short to do with Who We Are - is by now becoming extremely well documented (though not widely known or understood). 

Mitochondrial disease plus CTE? I dunno, folks. 

After forty years of literally scouring the face of the earth looking for love, I found the woman of my dreams. She will be here and we'll get married by this spring. 

After thirty-five years of literally scouring the face of the earth looking for a vocation that would make the best of my mind, talents and passionate interests, I find the partner of my dreams who could bring them to fruition in ways beyond my wildest dreams and would solve my chronic financial difficulties. 

Only to find out that I'm battling not one but two degenerative brain cell disorders. 

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So, the dilemma. 

Managing the diseases, managing a wonderful new relationship and all the responsibilities of being a husband (for the first time in my life!) plus managing all the responsibilities that would come with building the non-profit organization and website of my partner's and my visions is not reasonable to expect. 

As I write this, the last four days have been particularly brutal. 

Something has to give. Life itself? Or the lives of my dreams?

At no point in my life has living ever meant just existing and drawing breath. Living to me has always meant drawing and wringing every last bit of life out of every day I've been blessed to have been given. It means wringing every bit out of every opportunity that comes my way. 

And for the first time in my rather colourful and adventurous life, that means fully enjoying and making all I can out of life with the woman of my dreams and the vocation of my dreams. 

Yet, what is going on in my brain and body cannot be ignored. 

Dilemmas, Decisions and Letting Go. 

Somewhere, some time, I have to decide what to let go. 

One of the "fun parts" of living with bipolar and, as it now turns out, the effects of CTE, is that I never wake up to the same person. Every day I have no idea "who" I'll wake up to be or "what" I'll wake up to be. This is another thing that I've had learn everything I could to get used to and "tame" over the past four and a half years. Despite all my best efforts, it's as true today as ever; I'm just better practiced at it. 

When I feel good, I'm as good as anyone. My mind can work far above average. 

Other days we're talking total shutdown and even simple conversation is challenging and draining. 

During the good stretches I feel I can handle it all - and I could - and feel I'd be a fool to turn down such an opportunity. It's more than just about me; it's about my family. It's about paying off large debts I owe them. It's about my daughter's future. It's about the future of my wife to be. It's about setting them up with financial security.

I cannot tell you how much I loved discussing with and planning the long term visions of the newly incorporated Taming the Polar Bears Foundation for that time. He did a lot of work on a new blog format and it was, for a time, incredibly exciting. 

But with that came high expectations and work and responsibility loads. When healthy it's all within my abilities, experience and confidence.

Then a bad stretch like the last four days hits. Then I'm struck with the harsh reality of what's going on in my brain. 

My mind can still get unfathomably dark. 

I redouble my efforts on all of Positive Difference Making Fundamentals. I rest for much of each day. Slowly things begin to "come back on stream". 

Then I remind myself (and/or am reminded by others):

I ain't your average bear. 

- to be continued 

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