The Fragile Man

I have shopped my writing around to the publications closest to my subject matter and have found that they aren't interested in my opinion. They publish the editorial works of experts and I'm no expert and all I really have is my perspective. So, I've decided to write about the only subject I'm an expert in, myself.

I'm going to post the beginning of a book I'm writing and I'd like your feedback. Here is what I propose: Read the beginning few paragraphs with the understanding that this will be the telling of a six year journey through fibromyalgia and my other ailments. So read and let me know if you'd keep reading this book, or if it's best kept for myself.

Thank you in advance :-)

Namaste,

Ryan

I awoke on my couch, facing eviction, the power being cut off and working a job which was entirely too physical for my body. My wife and children were gone, left to Texas because I had been a violent man. I had curbed my physical outbursts, but was still difficult to live with. I was full of delusion and victimization and all the pain medication and muscle relaxants I had left. I didn't want to live another day, not without my family. I had the two dogs for company, and they loved me but it was hard to love them back when they reminded me so much of what I had lost. I looked into the empty room my sons had shared; toys still lain on the floor. I laid back on my couch, which had became my bed, since I wasn't sleeping in our bed. I lived a life of busting tires all day, six days a week, 70+ hours a week and staying awake all night. As I laid there a thought bubbled up from the center of my mind like the message from an old '8 ball"; all I had was myself for company and I hated myself. I was an ass-hole and a bully. As I realized this the room began to fade into so much black nothingness and I was there floating by myself.; outside of time and space with no beginning and no end. As I realized that  this was the fabric of reality, I knew myself completely and my body faded. I was simply the energy of me, this observer. I looked back and saw the fabric of my negative energy threaded through the lives of my family causing so much of our distress and problems. I saw it changing the beautiful nature of my children. I saw it causing my lovely wife to bend and change. I could feel her pain and fear in my deepest heart and I awoke.

I sat there staring into the room, blinking at the vivid clarity of it all just as I had done so many years ago when I received my first pair of glasses. Trees weren't just green cotton balls; life wasn't the fabric of my dreams. I understood into the center of a deep placed I had long ago suppressed,  that we are all connected and I had been so very irresponsible with my part in it all. I had been irresponsible in my role as a father, as a husband, as a friend and as a human being. I was selfish, judgmental, and so egocentric my victim mentality was like a suit of armor. I saw it so clearly of myself and I stripped myself naked unto the light of truth. I had fought against the worst of myself for so long. I was tired of shirking, tired of being ashamed of my true self. I turned and fought, finally. I closed my eyes, I grit my teeth, clenched my fists and faced it. When I opened my eyes I expected to be facing demons, shadows, enemies of some sort and what hit my like a blade to my heart was the sight of myself, pale face in my hands weeping at what I had done. I saw this man, who couldn't stand tall; who had faced his whole life as though visited by the ghost of Christmas past.  His shoulders were slumped and his heart was wallowed in sorrow and despair. I became aware of the energy, call it atmosphere, esp or however you can understand it, but I became aware of a looming choice. I felt it with every fiber of my physical being. Like my own spidey-sense; my karmasense was tingling like crazy. The fight or flight reaction was pulling like the riptide of the oncoming of a tremendous wave. I didn't care, I had made my choice and as the wave crashed I covered that man with my body. In the churning destruction I was washed away, split into so many layers of facade as the cinema of my life was shown before me. Each scene; a layer of delusion ripped away, exposing me, skinning me alive. I didn't falter, I didn't shirk. Layer after layer I watched as karma; my energetic responsibility for the threads of delusion, hate and judgement I had woven into reality were heaped upon my shoulders. I used those scenes flashed before me as bubbles of truth to follow to the surface if I were to survive. As I pressed into these scenes, no longer a witness; neutral, I became. Without knowing or noticing perhaps I became that figure I had seen. My face in my hands weeping as the pain I had wrought on others only to disguise myself, to cast my view from who I was. Their pain was to alleviate my own... the source of my shame shown before me as the last load of karmic weight. I stood and assumed it all unto my being. I was one again, like I had been so many years ago as a child. I was washed clean while not removing my past. This wasn't a fragmentation, it was a reunification. I could stand tall because I am a good person. I have done bad things, but I was no longer running from them. Stripped to near spartan living I walked my talk every day.

I had been shown the subtle luring nature of that inner space I came to call the cave. I walked every day being as present as I could be. I had seen the shields of delusion and their consequences and I rejected my reality and stood for truth come what may, how ever I may be judged or scrutinized I will walk in the light of truth. My first tool was to openly call bullshit on myself. When I was being weak and letting others do more work than I on the job I would call bullshit on myself. At first it took stepping into the restroom to actually face my reflection and call it out. "you're being an asshole, you're using and manipulating them and it IS NOT RIGHT" I had to affirm it in reality, not the vacuum of my mind because I can change the facts as I see fit in there. Out here in reality, if I spoke it aloud, I couldn't take it back. I foiled my sneaky and underhanded ego-self this way. It was what it was, I could not change it. Those moments were my foot holds, my anchor points for when I fell, and I fell a lot in the beginning. I began to see again, as I did in that moment of clarity, the sun warmed me, the coffee was richer and I was real, and I was ok. I began to rebuild myself in this way. I was raising two boys into manhood and I couldn't define it and the shame of my example to them thus far was like a burning  coal for the engine of my purpose. To be a good person.

Sharing really is caring

I really believe that sharing is caring, but the thought was brought back into my mind this morning during a Tourette's fit. They're usually directly linked to my stress level, which, with various anxiety disorders means it varies, for no reason and with no warning. Though it is usually correlated to my actual stress level. It usually goes like this:

Stress level:

1 - I don't know yet haha but pacing, definitely pacing... I never stop pacing
2 - The occasional twitch of the shoulders and straightening of clothing (the clothing thing always exists, like having clean hands and such)
3 -
4 -
5 - 3 to 5 range from stuttering, neck craining, hand twitches, foot tapping, guttural noises and clicks and the like. I usually sing during these times in order to focus on what I'm doing. In times like these I feel blessed I learned so many Earth based Pagan songs. They help focus my mind on positive things.
6 -
7 -
8 - High stress times I stutter badly and it always accompanies neck craining: sometimes to the point of such pain that I cry out. The hand body twitches become more exaggerated and the foot tapping becomes leg spasms and jerks. Yes, I admit here and now that I have spasmed into the Thriller dance on one occasion. On high pain days from the fibro, which I'll get to later, the spasms are in my back and they can take me down in an instant in complete agony.
9 -
10 - These days are all of the above with fibro nerve flashes which leave me utterly nonfunctional.

My wife and my kids know all of this because they've lived it, the poor things, as it's come about. I wasn't always this way. The onset of Fibromyalgia exacerbated what my Neurologist called "undiagnosed childhood Tourette's syndrome"  which made sense as I've been a finger drummer for as long as I can remember. To anyone on the outside it may seem odd and I know it makes situations uncomfortable so as I shared with my immediate family, I share with you my family at large.

Allow me to digress; I shared all of this in order to set the frame work for the sharing of my walk through Fibromyalgia. Also understand that I have arthritis and my knees are bone on bone, and I have some band disorder my Rheumatologist explained but I don't understand which means my hips ache and pop out of socket frequently. So knowing all of this I'll explain my Fibromyalgia. I say my because it's a host of disorders which plague different people differently. For instance it heightened the already existing Tourettete's and OCD (CDO) and brought new anxieties. My pain level is always parallel to stress changes and changes in barometric pressure. There are eighteen nerve points recognized as very sensitive with fibro and you can have any number of them active. I have all eighteen points active at varying levels of sensativity which correlate to changes in stress, movement, overall health, mental state (which is a real Bugger) and others. They can also just heighten for no reason. Mine are as follows:


1 - My back (4 lower back and 2 upper back at the base of my neck) and my right knee are sensitive though I'm rarely at this pain level with a cognitive mind. Mild headache. I creak like the rigging on an old sailing ship. Extreme discomfort as though I just can't get comfortable.
2 - Back, knees, headache at the base of my neck.
3 -
4 -
5 - Again from 3 to 5: Back (all points from this point forward), knees, elbows, ankles, feet (at the soles), hands, headache complete head mild migraine symptoms, clouded thinking, IBS, lethargy, loss of appetite, muscle spasms in my back and sometimes in my leg, The leg ones I walk out because I pace, the back ones are all day long twitches. If I sit down for too long they lock up and cause the points in my back to hit a 10 in pain. I have sat through one full movie with my family in four years.
6 -
7 -
8 - You know the drill: Extreme lethargy I'd liken to my worst bout of the flu (when I had pneumonia) extreme body and joint pain (my hands are swollen clubs), my knees feel like they're filled with broken glass, the foot pain is like a hot coal on the pad while the foot remains extremely cold with swollen joints, migraine headache, clouded thinking, grumpy, Anxiety bouts with shrieks at loud noises and flinches at sudden movements, IBS from the very bowels of hell,
9 -
10 - They blur into one and it's all of the above with inescapable agony that writhing in the fetal position won't comfort. Nothing helps; there is no place dark enough, soft enough, warm enough, cool enough... if I could be suspended in air I couldn't find comfort and I feel like I know how the Earth must feel moments before magma becomes lava.

So I tell my family and close friends what my pain level is at. I do so because I have no sores, no open wounds which are dressed, no outward signs really other than my permanently dark eyes to alert anyone that I am sick. I am sick.

I am sick.

It has taken me so long to simply admit that. I have fears of hypochondria so I am very stubborn about being sick. I have been sick for as long as I can remember. I have grown a strong dislike of doctors and western medicine in general. I has taken me a long time to become medicated again though my life is MUCH better being so.  I was told at my last doctors visit that I am maxed out on Lyrica and Cymbalta; lovely. I have to fight what I assume (yes I assume) is the doctors view that I'm just after some pain medicine like percocet or something. I don't want that. I really dislike the feeling of those pain meds. I don't drink to the point of feeling "off" and I don't like that no matter what I take, prescription pain meds, I feel that way. I am a medical marijuana patient. I have been for two years. The amount of pain relief is directly in my hands. The type of relief is under my control as well. By using different types I directly address what I hurting or wrong. I can remain functional and believe me it has saved my marriage because I'm no peach to live with. My wife is a Saint for putting up with me, truly.

I wake up groggy and I go to bed wide awake. I pace all day so that when I go to bed I'm exhausted and I'll sleep as still as possible because I don't want to ruin Rose's sleep. I still sleep restlessly and the points on my back have caused us to cuddle much less. I really miss that physical contact. To explain my back; have you ever had a broken or bad tooth? Where the root was exposed? Where just the slightest breath inward was felt and it could surge to a burning pain at the lightest touch? It's like my lower back is a mouth full of broken teeth. The Lyrica and Cymbalta keep the pain at about a high discomfort level. My family know where to hug me safely, others I keep the pain within; it's worth it for the physical contact and exchange of love. After the hug, which usually ends with a pat on the back, I smile and excuse myself to go walk off the pain. I will not miss out on a hug, and if you're reading this and thinking of hugging me less, even one hug, please please don't. Please don't withhold, I am a hugger. 

I meditate in the morning to offset the lost sleep. I try to meditate a couple hours a day between sitting Shinay and walking Shinay. I open my shrine in the morning which consists of chants which set my intention in the right direction, offerings of saffron water and candles and incense when I have it. I center myself through this process. I get the coffee going and get my family off for their day. I ask them every day "Did you get enough sleep? Did you get enough to eat? Are you going to have a good day?" We play fun music. My youngest son likes Stevie Wonder's "Sir Duke" especially and I love the way he sings it in the morning. After they're off I will come home and medicate and walk out the cramps and spasms. About Noon I'll be able to get out and about to run any errands. I recently got a handicapped parking placard. I thought I wouldn't use it often because as we parked in the past I had thought about getting one and assessed if I would "need" to use it. That assessment was flawed though because it was from the perspective in which parking there wasn't actually an option. I use it a lot. I walk with a cane for a few reasons: my knees; they won't do a knee replacement until I'm in my 60's with the lack of insurance I have. So I'm using what I have wisely and walking with a cane. It's also for my back. My right hip is what I would describe as "soggy" it doesn't hold my weight during a stride. So, the cane helps a lot even though I really dislike it. My skin is soft and thin now. When I look down I don't see my Dad's hands, I see my Grandpa Hope's hands. That's ok by me, he was a great man, but it's a little early. I'm not yet 40. I digress yet again (fibro fog) I'll go get the kids from school around 2:30 and leave again around 5:45 to get Rose from work. We'll get dinner figured out and I'll cook or help cook depending. I'll get Rose off to bed, then the kids, and I'll pace out all the pain and anxiety from the day (even though I do it throughout the day) and exhaust myself around midnight and fall asleep.

That "day" will fluctuate depending on the factors I listed and I have no retreat from my day. I cannot fail my family. I feel horrible as I am no longer the provider for me family, while at the same time I have enormous pride for my wife and how she's blossomed under this. As my body crumples up on me I struggle with depression (fibo add-on), I am unemployed and most likely unemployable, I can't work hard around the house... hell I barely keep house. I manage to taxi my family and remain an emotional support. It's all I have and I give it all.

I'm sharing all of this because I am sick, but I am a human being. I believe we need to open the dark corners, deal with them with the strength of our family. We need to dispel the thought that we should somehow be ashamed of our bodies, of who we are. We desperately need a coming together. I share because it is caring, caring that maybe this will reach someone who needs it on a day they need it. Gifts are given without thought of reciept, or they should be and I believe your very presence is a gift unto the universe for us all to share so make it the best you can give.

Imagine. Everyone, everywhere being open and giving, understanding and nonjudgmental... We have to be the change folks and this is my humble contribution.

The Fabric of US

The fabric of a civilization, to me, has always been how well it's people work together. Then I drive to work and watch as more and more people run red lights, stop signs, speed, drive dangerously.... funny how you're my countryman until we're driving near each other, then you're my enemy.

No wonder we're so confused.... but then adjust your perspective even farther and see how civilized our planet has become. I'm trying to find some reason to be proud of US without having the source of that thing I'm proud of come from our disgrace.

The grocery store, shopping malls, amusement parks and so on; they all seem to have the same atmosphere: competition. Where did the cooperation go? Where did consideration go? Where did all the values we were raised to believe disappear to? When did we grow to hate each other so much? We villianize yet don't want to be villianized. We are prejudiced yet don't want to be prejudged? It amazes me. We join a group, be it religious or what have you, which defines itself by what it's opposed to not what it believes in and we can't figure out why the positives in our lives are eroding?

How many have given control over? How many consciously positive acts do make in any given day? How do you take control over your own life and happiness? I've heard so many excuses, just in conversations with my friends. So many join that group as that positive act so that the group can do the positive work for them, then they simply go back to the way they were before while believing they are in some way contributing. No, I'm sorry, you're not. What you're doing is buying a clean conscience. Don't feel too bad though, that has happened all throughout our history. It wasn't too long ago you could buy your way into heaven, according to the Catholic Church, but don't tell Martin Luther we've undone his work and that you can, once again, buy indulgences. You may say that this is only one "branch" of Catholicism and that it doesn't pertain to you directly. Well, do you live on this planet? Are you exposed to people who are a) of a different religion or b) read? Then how exactly do you keep this concept from invading your consciousness?  It isn't a solid & tangible thing, like gingivitis which we fight by using mouthwash. It is before words,  not of this reality, a concept which is exposed to us all and whether presented positively or negatively anyone can be exposed to it. You cannot rid the world of it because it comes from us, all of us. It comes from every lazy inclination we indulge, every corner we cut, every half step we excuse. It is our nature, it seems, to live down to our lowest not up to our highest consciousness. 

Have you ever worked somewhere and it just clicked? Where everyone was pulling their weight and the whole thing was fun to be a part of? Do you remember when it died? Because they all do. It only takes one person to shift a bit, a new person added, a stabilizing force to leave, etc and it's all gone and all those folks who were giving their 100% now watch to see how much everyone else is going to do first. How easily our ideals crumble. It only takes one anymore. There was a day where peoples moral fiber was stronger, when their work ethic was more sound; of course with that great positive came the counterbalance of closed mindedness. It seems we have always been trying to find a way to live our ideals, and compromising. There is a huge difference between compromise for the greater good and compromise to avoid a conflict. Once we head down that road we are forever governed by the bullies in our life.

The great civilizations of our time came about from the work of cooperative individuals. There was no way to buy the great democracy of ancient Greece, well not at least until it it transformed and became the warlike nation of Rome. Then you could buy your democracy, which would be a bit more fair in your favor. The same concept exists today, we call them special interest groups and lobbyists. It is a way to circumvent the system and get more for me than for you. It's how our country works now, and we can see it's action in our everyday encounters; the mall, the grocery store, the highway; anyplace many of us congregate without supervision or leadership. No one is sitting on the front of your shopping cart reminding you to be considerate. No one is riding shotgun helping you to see what a dick you're being by cutting that guy off. We have only ourselves to rely upon and we're not up to the task anymore. We've given away our responsibility, to our government; all while we said it was corrupt, buy hey, it's better than actually getting involved, our religious organizations; which tell us who to hate, just about anyone who promises us less work and more fantasy. We no longer believe in the sacrifice of parenthood and we leave our kids to be raised by "Jersey Shore" and other "reality" television because, hey, it's easier than getting involved. We see the lack of our action everywhere. We see this attitude, which we greedily adopt, all over and we "support it from our lands in the north while I gain English favor by condemning it, and ordering it opposed from our lands in the south" and this dialogue takes place within us, between our puppets and our true selves and still we wonder why we're so confused. It is our bright and true self wanting to do good giving in to the We wonder why we have no hope. We wonder why the world seems so bleak. We wonder why no one has fixed it yet. We suck.

We pollute and make the excuses of how it is necessary for our survival, there we go ordering it condemned and supporting it all at the same time. We just made our existence now more important than generations to come, yet we don't see it in that light. The light of truth which is without excuses or "circumstances". Just look for yourself and see what you see. Detach yourself from the viewpoints given to you through family, community, religion, government, nationality, gender, age, sexual orientation and so on and find your true self and look. Find your morals and ethics, define who you are through your actions not your clothes, house, job, car, money because all of those are just the merit badges of looking away, of saying "this doesn't concern me" and falling back to sleep while children have their childhood stolen to make the clothes which define who you are. You exist before words, before concepts and you are completely free to be the person you are. We are, all of us, responsible for our selves, our brothers and sisters, this planet and every single second of our lives. Remember that job? The one where it just clicked and everyone got along. Do you remember?

Why can't the world be that way? I'll tell you, the reason is us.

We have had beautiful souls who have tried and tried to tell us, to warn us and yet we won't listen... until after their death, then we define ourselves by their words. Don't define yourself by their words, understand them; find yourself to an understanding of the concept before the words and look into your honest heart and see if it exists there, only you can know.

Examine these with your soul:

A 'No' uttered from the deepest conviction is better than a 'Yes' merely uttered to please, or worse, to avoid trouble.
Mohandas Gandhi 

We win justice quickest by rendering justice to the other party.
Mohandas Gandhi


What is true of the individual will be tomorrow true of the whole nation if individuals will but refuse to lose heart and hope.
Mohandas Gandhi

Those who say religion has nothing to do with politics do not know what religion is.
Mohandas Gandhi

Though we may know Him by a thousand names, He is one and the same to us all.
Mohandas Gandhi

We do not need to proselytise either by our speech or by our writing. We can only do so really with our lives. Let our lives be open books for all to study.
Mohandas Gandhi

Service which is rendered without joy helps neither the servant nor the served. But all other pleasures and possessions pale into nothingness before service which is rendered in a spirit of joy.
Mohandas Gandhi

A nation that is afraid to let its people judge the truth and falsehood in an open market is a nation that is afraid of its people.
John F. Kennedy

As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.
John F. Kennedy


A nation or civilization that continues to produce soft-minded men purchases its own spiritual death on the installment plan.
Martin Luther King, Jr.


A nation that continues year after year to spend more money on military defense than on programs of social uplift is approaching spiritual doom.
Martin Luther King, Jr.


A riot is the language of the unheard.
Martin Luther King, Jr.


An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.
Martin Luther King, Jr.

At the center of non-violence stands the principle of love.
Martin Luther King, Jr.


Faith is taking the first step even when you don't see the whole staircase.
Martin Luther King, Jr.


Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed.
Martin Luther King, Jr.

All major religious traditions carry basically the same message, that is love, compassion and forgiveness the important thing is they should be part of our daily lives.
Dalai Lama

Be kind whenever possible. It is always possible.
Dalai Lama

Happiness is not something ready made. It comes from your own actions.
Dalai Lama


Old friends pass away, new friends appear. It is just like the days. An old day passes, a new day arrives. The important thing is to make it meaningful: a meaningful friend - or a meaningful day.
Dalai Lama



Better than a thousand hollow words, is one word that brings peace.
Buddha

However many holy words you read, however many you speak, what good will they do you if you do not act on upon them?
Buddha

In a controversy the instant we feel anger we have already ceased striving for the truth, and have begun striving for ourselves.
Buddha

It is a man's own mind, not his enemy or foe, that lures him to evil ways.
Buddha

It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell.
Buddha

The only real failure in life is not to be true to the best one knows.
Buddha

Whatever words we utter should be chosen with care for people will hear them and be influenced by them for good or ill.
Buddha

The thought manifests as the word; the word manifests as the deed; the deed develops into habit; and habit hardens into character. So watch the thought and its ways with care, and let it spring from love born out of concern for all beings.
Buddha

and, though I'm vastly out of my league with these beautiful souls, one of my own:

The recognition of a moment where you witnessed yourself making an excuse to yourself for your own bad behavior is your call to enlightenment by establishing the source, action of and only escape from your own karma.
Ryan Nikkel