Roger That

me

For as long as I recall I've pushed this body, this container that I was born into to its known limits and beyond that too. I am writing the following in the hope that this will perhaps help anyone else reading this with their own lives in their own way.

Some people will accuse me of fishing for sympathy but as I've discovered the sharing of this type of information in some case will save a life or at best help others who are in similar situations fighting in life rather than living a life worth living.

At age 14 I attended a consultation with a rheumatologist in Rockdale, Sydney after presenting with sacroiliac pain [ https://en.wikipedia.org/wiki/Sacroiliac_joint ] to a doctor repeatedly over months before. I was informed that the blood tests that had been taken the week before confirmed I was Human Leukocyte Antigen (HLA) B27 positive [ https://en.wikipedia.org/wiki/HLA-B27 ]

The stats run this way:

"...The prevalence of HLA-B27 varies markedly in the general population. For example, about 8% of Caucasians, 4% of North Africans, 2-9% of Chinese, and 0.1-0.5% of persons of Japanese descent possess the gene that codes for this antigen.[1] In northern Scandinavia (Lapland), 24% of people are HLA-B27 positive, while 1.8% have associated ankylosing spondylitis."

So you can see by those statistics that the condition that is genetically transmitted and transmuted, is also much higher per population average for caucasians and that is me of course. Another interesting factor that speaks to the rarity or likelihood of ever exhibiting traits of Ankylosing Spondilytis is as follows:

"...For example, while 90% of people with ankylosing spondylitis (AS) are HLA-B27 positive, only a small fraction of people with HLA-B27 ever develop AS. People who are HLA-B27 positive are more likely to experience early onset AS than HLA-B27 negative individuals."

Well as fate would have it I am one of the few people who exhibits and endures the painful effects of the degenerative condition. I am also of the few people who also exhibit other associated pathological conditions as a result of being HLA-B27 positive.

"....In addition to its association with ankylosing spondylitis, HLA-B27 is implicated in other types of seronegative spondyloarthropathy[7] as well, such as reactive arthritis (formerly known as Reiter's Syndrome), certain eye disorders such as acute anterior uveitis and iritispsoriatic arthritis and ulcerative colitis associated spondyloarthritis. The shared association with HLA-B27 leads to increased clustering of these diseases.[8] "

So, in summary here is how my Ankylosing Spondylitis (AS) condition has manifested itself in me over the years progressing from teenager to adulthood using a Wong-Baker Faces Pain Rating Scale [ https://en.wikipedia.org/wiki/Wong-Baker_Faces_Pain_Rating_Scale ] and also noting how many times I've presented at hospitals for assessment, pain relief or admission for treatment for that pain specific or combined:

  • Sacroiliac pain - is the joint between the sacrum and the  bones of the pelvis - chronic and debilitating ( 6-8 out of 10) - 2 hospitalisations;
  • Uveitis - is the inflammation of the uvea, the pigmented layer that lies between the inner retina and the outer fibrous layer composed of the sclera and cornea -  https://en.wikipedia.org/wiki/Uveitis (8 -10 out of 10) - 5 hospitalisations with two of those as ophthalmic emergency;
  • Pericarditis - which is an inflammation of the pericardium, heart tissue sac - full black out with two ambulance admissions to emergency - (10 out of 10) - https://en.wikipedia.org/wiki/Pericarditis 
  • Knee Effusionsswelling of the knee (colloquially known as water on the knee) occurs when excess synovial fluid accumulates in or around the knee joint - (8 - 10 out of 10) three hospitalisations with two knee debridements - https://en.wikipedia.org/wiki/Debridement

As per another post [ https://www.alexanderhayes.com/journal/at-the-heart-of-the-issue ] earlier I am now waiting here in the Fiona Stanley Hospital in Perth having been flown down last week by the Royal Flying Doctors service of Australia. So far they have ruled out a heart attack yet have run countless ECG's and cardiovascular tests including an angiogram and talk of installing an Implantable Loop Recorder (ILR) or cardiac monitor which is inserted in the chest cavity under the skin.

There maybe some correlation also with some Vagal Syncopy of which I've fainted a zillion times as a teenager and that of my hypertension and arrhythmia, low BPMs and all the other manifestations which are putting everyone's career spikes on alert.

Discussions are underway about the possibility that there maybe some correlation between my early days of treatments using high doses of prednisone which is a corticosteroid, the drug Sulfasalazine, the anti-inflammatory Meloxicam (Mobic), copius quantities of Oxycodones (Endone) and Morphine, non-steroidal anti-inflammatory drug (NSAIDs) Ibuforen, acetaminophen or APAPs (Panadol), opioids like Tramadol and probably another ten which I cant think of at this very minute, with that of my present condition. Oh, thats right, add every known inhalation medication such as Intal ( Cromolyn sodium), countless Ventolin puffers Salbutamol, also known as albuterol and marketed as Ventolin) and preventers like Fluticasone propionate (Flixotide or Becotide)  which are hormones that predominantly affect the metabolism of carbohydrates all which did havoc to my teeth and my lungs.

It's obvious to anyone that western medicines have failed me over and over and none more so that now although I must admit the hypertension medication Valsartan which is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker) that I am on now has probably saved my life on more than one occasion.

Of most likely correlation though between all this drug overdose above and my current (pending) prognosis is the tie between those steroidal and opioid drugs which have lowered and most likely damaged my adrenal functioning to produce the natural corticosteroid known as cortisol.

According to Wikipedia:

"...Cortisol is a steroid hormone, in the glucocorticoid class of hormones. When used as a medication, it is known as hydrocortisone. It is produced in humans by the zona fasciculata of the adrenal cortex within the adrenal gland.[1] It is released in response to stress and low blood-glucose concentration. It functions to increase blood sugar through gluconeogenesis, to suppress the immune system, and to aid in the metabolism of fatprotein, and carbohydrates.[2] It also decreases bone formation.[3] "

It makes logical sense that if you slam your body with drugs that replace the natural functionings of the human body with those of the pharmaceuticals duopoly then the fallout is going to happen through the very functions and organs such as the eyes, heart and liver as a result. I'm also reflecting on how many times I've been hospitalised with things like deep vein thrombosis (DVT) and then been pumped full of Heparin or Warfarin with are anticoagulants to treat and prevent deep vein thrombosispulmonary embolism, and arterial thromboembolism of which in my case I'd had a clot prevented from reaching the brain via my jugular vein.

Anyway, after all of that I sat with a super sexy young doctor here the other night who has an interest in Ankylosing Spondylitis who believes there is a direct correlation between diet, exercise and medical functioning. In some ways through the years I've known all of this through various and many hospitalisations

More specifically her advice is as follows:

  • Low glycemic index diet - low sugar or no sugar forever;
  • Yoga - high level (Asana) low impact flexor;
  • Zero alcohol - ever, never, ever.
  • Zero tobacco - ever, never, ever.
  • Fatty foods - limited, salt free 
  • NSAIDS for pain - Diclofenac (Voltaren) or Ibuforen at most

In essence it would appear that I've used up the 6th life of the nine I've been assigned in a lifetime. I've been told I've narrowly avoided having a stroke.... 

It seems obvious that the link between hypertension and anger results in the body shutting down as an immune response. The same could be said of that with the emotion of anger and the numerous ways it associates our emotional selves to reach out for poisons to mask that anger-slash-fear association.

I've written much about the love-trust relationship with the world and its my greatest challenge yet having largely been subjected to the worst of the worst from those who had been charged with being the best of the best.

 

At The Heart Of The Issue

IMG_6522.jpg

Tonight I am writing this with the intent of sharing for those who follow my life journey is some way a more considered account of what has occurred in the last week complete with photos.

Last Thursday I was parked outside a clients home and was checking my paperwork prior to entering the property. The day prior had been frantic showering, dressing, feeding and minding another client as part of my very part-time role as a Disability Support Care Worker. I'd taken the role on to bring some extra well needed money into the household.

My phone clock said 2:32PM when I noted a sharp metallic taste in my mouth and looking out through the windscreen noting my vision was blurred and I was photophobic. I picked up some paperwork and  blacked out. A minute or so later I became conscious of the steering wheel that my head had collapsed forward into. I immediately picked up the mobile phone and in a haze of lightheadeness and nausea I typed in ".....have just head butted the steering wheel." Pressed send and received a reply back from Magali asking what I meant.

I informed her I'd blacked out in the car. We conversed about not going to the client and going home which was a short distance away. Feeling steadily more nauseated I headed instead to Broome Regional Hospital and presented at casualty - emergency services. Within a minute I was triaged and in a bed being attended to by two amazing doctors who had quickly pulled my file, figured out this was similar to my full blown myocarditis attack in 2016.

A few hours later and I was in the high dependency unit (HDU) with recurrent blood pressure readings of 190/100 and a heart rate of 38 BPM. I had two canulas put in and had long diagnostic consultations with a whole crew of cardio trained doctors and medics. The decision was made quickly to send me to Fiona Stanley Hospital in Perth via the Royal Flying Doctors plane service. A day later and via ambulance I was loaded into the plane by stretcher and 6 hours later with one quick stop at Meekatharra I had landed at Jandakot Airport in Perth.

I've been seen by no less than eight world class doctors now and this is four days later as I await to be seen by the senior cardiologist and team. Tomorrow I am informed I am to undertake a stress echo-cardiagram, then I will be given a drug which will be tracked and scanned via an MRI in my bloodstream. If no discernible effects to the heart are noted then they will consider conducting an angiogram and if that fails to show any results then I will be taken to surgery.

I may have to have an Implantable Loop Recorder (ILR) with a three year battery life which will not only record my heart rates and fluctuations but also provide shock treatment for the heart if it should crash into arrhythmia. So that is the plan and here I now sit waiting for the next chapter of my life to open forward and for my partner Magali and those who have supported us to get better news of an imminent recovery.  I am grateful for the care, empathy and compassion that Magali consistently demonstrates despite my often irrational PTSD rants, neither am I complacent nor expectant for anything more than her amazing company, partnership, perfunctory prose keeping my soul alive.

Magali McDuffie

At the heart of the issue is love.

I fully believe that this can be resolved through a focus on love and trust, rather than repeat discussions and arguments that descend into fear and anger. I know I am the cause of many of the arguments and hostile situations people find themselves in around me and I can only act with love to ensure these do not occur. Fear and anger only results in a collapse of all we know around us and ultimately fear and anger is a self destructive force of no use at all to anyone.

There must be a better way to live a healthier and more fulfilling life than one where every move and mode is mediated through fear and anger.

Love is at the heart of the issue.

Fearlessness

 'Lovers' : Photo by Alexander Hayes, Canberra, Australia

'Lovers' : Photo by Alexander Hayes, Canberra, Australia

Interstate travels  provide me with a time to reflect deeper on life and I find myself often quite emotional as these trips are often filled with facing fears of change, new connections which require absolute honesty and sometimes letting go of places where I've lived for considerable periods of time.

These trips require a certain fearlessness.

Given that life is filled with many of these journeys the same foundation for learning can be applied holistically to all of life, so, in my ruminating state the other day I composed a short list of what I believe form the foundation for that state of fearlessness.

  1. Love and trust are at the core of living a powerful and fulfilling life.
  2. Love must guide our communications with everyone.
  3. Anger, fear, guilt and shame that we externalise in our behaviours only produce self destruction and resentment in others, especially our soulful partners.
  4. With courage we can literally replace fear with love and with fearlessness connect with anyone in a loving relatedness.
  5. Our connections and communications with others are fulfilling when we 'face, feel and let our fears go' in effect 'letting go' in order to grow.

In summary, I've learned that love, trust and courage all actioned through an embodied fearlessness are the answer to many of the challenges that arise in a dynamic life worth living. Please pass this post onto those you feel might benefit from the above list and I would love to listen to your feedback. 

Libre Detre

 Alexander Hayes & Magali McDuffie - February 2015

Alexander Hayes & Magali McDuffie - February 2015

This is not junk mail and I have not directed you here as part of a marketing campaign. Most importantly this is MY point of view composed and listening to my partner.

This post begins with a caveat - for you the reader. 

Your life choices are not wrong, nor are ours nor is this an exercise in comparison. We are not judging you or anyone else for the choices you make in your life, nor are we asking for you to judge us anymore than you enjoy being judged yourself.

I wrote this post and Magali contributed to it in a bid to be OPEN about who we are and respect you may be offended by who we are but frankly we don't care if you judge us, particularly those with locked belief systems.

This is a steep learning curve for us both and all we have done different is write about our personal experiences PUBLICLY rather than secretly pretending to be that which we are not.

-----------

So....Magali and I both have chosen 'freedom' as the core living truth in our life which we discussed at length at the very beginning of our connection and continue to discuss.

Freedom as in free to be, as we define it, not what others tell us to be. Freedom within constraint of law but always pushing up against societal norms, status quo - Libre D'etre.

We both recognise that we had never (ever) have considered that our life experience and our relatedness as perhaps the greatest legacy or giving back to the world, different to our career aspirations. That realisation that your life story is the inspiration for others.

So it is I write tonight reflecting deeply on something that has happened recently, something so deeply fundamental and (for others) radically untenable in traditional relationships. I say 'radical' only in that myself I know I took a giant leap forward which for some they have always inherently felt they had anyway.

But first some background to this post.

In February 2015 I grappled with fundamental awareness points stating:

"....So, after 46 years of living in every known conceivable arrangement of relationships I have come to a non-binding awareness of the following. I have put them as dot points in a list because I know some of you might like to consider them as separate things but in essence they are all the same and interwoven as one."

I then went onto make a list of all the factors I believe make up who we are and the very constitutions of what relationships are for Magali and I including:

  • We are single, always.
  • The most powerful relationship we ever have is with ourselves;
  • We have many, many, many relationships in our lives and those we have sex with make up a very small proportion of the total count of who we related too;
  • We have only the capacity to have one bonded, fully articulated, affinity centred, trusted relationship - a partner, who essentially is our witness in our life;
  • We can have sex with as many people as we want but we cant have as many people as we want having sex with us;
  • In being open with our partner, in being open with our Family, friends and the world we can be in ourselves;
  • In each relationship (of all descriptions) there are only three things that matter - treat each other well, respect each others differences and to show on a constant basis in an explicit way gratitude for each other;
  • Above all, trust - trust is the core essence to any relationship especially with ourselves.

In late 2016 I went as far as I could dare go in speaking of which we both now speak freely and open publicly. The post at that time focussed on the concept of compersion - https://www.alexanderhayes.com/journal/compersion

I've also written about:

So....the following is an account of how last week I let go and let myself grow.

----------------

FEAR

Strikes at the heart, head.

That hyperventilated feeling, anxious and grabbing for coffee, cigarettes and all those things I know do nothing to quell that fear. A visceral snake-sliding-woosh-feeling that surges from the soles of your feet to an explosion in your head. Everything I had ever read, heard, been advised of punched into me psyche and fear permeated.

JEALOUSY

It cut my day in half and as I tripped into lunchtime I know everything that anyone who had ever taught me to fear letting go...well this was the show. This was the moment I was being challenged, the deepest undoing of my mapped monogamy, my possession of partners, my condescending and hurtful comments made in fear, disguised, heavy salient syrup of fear.

Marriage after marriage, relationship folding furiously from one to another and each time my PTSD saying 'run' yet my soul saying 'stay'. 

REALITY

Magali has always encouraged me to be me (from the very beginning of our relationship).

As a result, with trust, I have been connected physically, emotionally, spiritually and intellectually with many people over three years.This has of course affected Magali deeply and yet I recall many times my almost unfathomable gratitude that she respected my own needs to connect fully with others which in turn grew our relationship, stronger. We had both expressed numerous times to each other and around our lovers that we are NOT IN AN OPEN RELATIONSHIP where one, either or both people in a partnership give the other permission to become physical with other human contacts.

We both assert that we have as a single person always had and always will have the FUNDAMENTAL RIGHT to be with anyone at anytime.We are in fact exercising our rights as single people to practise ETHICAL NON-MONOGAMY. 

ETHICAL NON-MONOGAMY

The concept of ethical non-monogamy is both rich and rewarding as described in 'Why ethical non-monogamy is AWESOME and totally worth the extra effort' by http://offbeathome.com/ethical-non-monogamy/

Ethical non-monogamy is often most closely aligned with polyamory, yet again we do not subscribe to that popular definition either as Magali and I share a complex and dynamic relationship which also challenges the polyamorist paradigm.

poly • am • ory

The fact of having simultaneous close romantic relationships with two or more other individuals, viewed as an alternative to monogamy, esp. in regard to matters of sexual fidelity; the custom or practice of engaging in multiple romantic relationships with the knowledge and consent of all partners concerned - Oxford English Dictionary, 2006

Here are some other great reads in this often contentious discussion area:

265069.jpg

COMPERSION

Compersion is literally 'letting go' in order to grow. As the opposite to jealousy true compersion, practised and in action enables our unhealthy attachments to our partners and those we love to disappear.

So I turned to Magali and said "...you are blessed. Free to be... always were, are. No permissions needed. Not shared as you are not owned. Go connect, enjoy and be yourself in this world."

LIBRE D'ETRE.

I found myself standing there actually saying it.... hearing my own voice knowing it is the other compassionate, spiritual and soulful me the one I had buried away in those fear folds. That 'me' I always instinctively knew was the way forward.

I instantly felt excited, turned on, connected...back in a better space. The day prior amidst a flood of tears I'd scrambled together two pages of notes written mainly to myself, saying everything I'd felt in fear...a string of irrational needy throwaways. These feelings are perfectly normal I'm told and jealousy, fear of abandonment, comparison and self worth flooded through me like a virus.

That list went through the shredder 48 hours later after a long discussion with Magali.

Then there was that meeting in the airport, that intense rush of happiness for you Magali. Seeing you happy, chirpy and back in yourself, radiant and happy.

HAPPINESS

Flushed cheeks. Swagger. Coy grin. Flick of the hair. Thin lip. Naughty laugh. Giggles.

It all makes sense. Seeing your partner happy in themselves and fulfilled is greater than any shared lover tryst. Now a reality and no longer some benign fantasy.

Free to be. Do what you want wherever, with whomever however....with respect. With an intent to grow your relatedness with others. Approaching love and life as a series of relationships good, bad and everything in between. Deep lust. Love. Loss. Grief and the coming back. Growing our connection.

Trust. Always returning to trust. Trust above all else.


“Let me try to throw some light upon what I am trying to tell you. First of all, love always involves freedom. If a man says he loves you and yet denies you your freedom, then you often hate him. Yet because of his words you do not feel justified in the emotion. This sort of emotional tangle itself can lead to continued entanglements through various lives.”
— Seth Speaks - Session 550

Entitlemania

 Source: xnspy.com/

Source: xnspy.com/

I think we have reached saturation point where as parents we have lost our way using old rules to govern new ways of living.

Look at our kids. They are addicted to screens to the point that as parents we are the 'ughs' that inhabit their house. We have become those barking contradictory fools that demand they get home by midnight, driven by a friend because we are too drunk ourselves to drive our own car to go find them. Our credit cards are racked up with all sorts of app store spends and when we threaten them with 'grounding' they laugh and say ' well go ahead then because you are already standing in my room and this where I want to be anyways'.

So you wake up in the morning to them screaming at you as to why they are late to go out for a 'makeover', stumble into the kitchen to find empty four litre ice cream containers, jello plastered all over the bench and a string of ants eating their way through the honey smacko triple whipped cookie crumbs. The car is in for a service yet again from the countless taxi pickups you made as you ferry your ungrateful, unseeing being to and from soccer, football, basketball, party, after party, shopping centre after shopping centre and guitar lessons home again.

You whine to your own parents that you are ignored, pushed, shoved, screamed and threatened with "....you fucking touch my shit in my room again you CUNT AND I WILL FUCKING KILL YOU". All those lovely photo albums of that cute kid you once knew have disappeared into that unkempt, slovenly, obnoxious, jackass that now occupies your teenagers bedroom. Your garden hose no longer reaches the end of the rose bushes as you trip over the empty bongs in the grass and that rank reek of male urine is what is killing the petunias. 

Long gone are those dinners where you could at worst tell your child to 'shut up and eat dinner' and when you have threatened to smack them they have read you the riot act of 'indecent assault occasioning body harm' or 'you are one step away from a divorce'. You confide in your partner who has taken to rip their hair out in quiet away from the point of conflict and despite the years of their seemingly serene calmness they too have turned into the vice-Superintendent. 

So what has technology taught you in the last decade that you thought you might avoid and unsuccessfully now live by. So the television wasn't that great a babysitter was it? and your benign assumptions that your teenager isn't accessing porn largely went unfounded too. The idea that them having a mobile phone was your security of mind failed as you flick through the candid surveillance shots and video clips they had been sending through the Snapchat without your knowledge.

So now you are standing there pointing your finger at me, the Internet and blaming me for your issues and lack of empathy for your situation. Well it's like this folks. Your idea of security and well being isn't valid anymore. Your kids entitlemania, need for consumerism, capitalist pig tendencies, insatiable greed for Youtube likes is where its all at. Long gone are the 'these are the house rules' as we feed your kids all the shit that they could possibly need to turn your precious little bumpkins into the surly, selfish and viperous soulless drones we need. 

Entitlemania is here to stay and the sooner you get used to the social-surveillance you live within, the lock-step buy-this-then-that instructions and the countless ways we can turn your children against you then the sooner your lives will evolve from that sensitive new age generation blah rubbish you were fed the better.

Love, your entitlemania-ego-rendition-of-you as a fairy queen is long lost somewhere in there as you sob into your pillow. The only antidote to your sickness is wellness and no, Google doesn't have the answer and no amount of prescription drugs, yoga or clandestine flings with that nice person at work will help either.

This is where we as parents admit that its a tough road ahead and no tougher than the road ahead for our kids and what they have to face life without their daily punching bag and foopie blanket to caress. 

 

 

Justice

In society we are grown from a young person to believe that if we are harmed or even threatened that there is a natural recourse for this action under the premise of justice, that 'Law' will ensure retribution, order and balance will be retained.

Read More

A Gift

I received a package in the mail today.  As I knew already it would contain nothing more than an organisations coverup of the truth of the matter pertaining to my resignation. 

Read More

Freedom

The term libre detre - 'free to be' comes to mind. I hadn’t really thought of what the term meant till it became obvious to me that my perception in life or awareness as some describe it had arrived at a point where I knew I was restricted, lacking freedom in many ways.

Read More