Permanently disabled 20 years now. Severe Chronic Pain. Homebound. I meditate the beautiful and draw power from my connection with God to aid the healing and alleviate the pain. Senior Male. Married. Wife and Daughter artists too.

I can only spend short periods of time out of bed. Only 10 min at a time at the computer, a few times a day. (Usually less). I can only leave the house in an ambulance. I have very little social contact. I organize for photography before taking shots so as to make the most of my time out of bed. Most of my photography work is done indoors with the use of flower boxes hanging from the windows. It’s always a race against rising pain to finish without help. My wife does help me set things up under my direction, and for this, I am very grateful. All still-lifes are my arrangements. Although the quietude and lonesomeness do offer time for meditation, I find that “balance” is most conducive to growth and healing so my time here is very limited if I want other things.

Mostly, I do still life photography and poetry. Poetry comes spontaneously almost completely finished. Poems write themselves or they don’t get past my sensors. I call that “inspiration”, if I’m working too hard for it, I probably don’t mean it – or deserve it – in any case, it works that way for me. As a matter of fact, it is a profound challenge to write at all. I must work hard to get that last few percents of perfection. I achieve some word craft through many drafts, once it is conceived.

I started looking at Photographs on the Web to find material for meditation exercises that would allow me relaxation in out-of-body separation from pain. In this way, I also found my imagination and much more. I have been criticized for this, for being an escapist instead of absorbing my experience head-on and turning it into a spiritual awakening. This profile page is not designed to sell unless you are interested in what a person who lives in relentless pain can still do.

As difficult as you may imagine this to be, the worst part of it is some of the people I must encounter. You don’t notice them. I didn’t notice them either before I became disabled and in pain. But they are there and they have a thousand ways to judge you negatively for your pain, “nicely”. Very nicely. They all, in fact, are “nice people” and the only way they could find out differently is encounters with disabled people who could raise their awareness if they were willing to risk it. When they believe that they have been offended, their ego will clobber you no matter how nice they think they are. Typically they protect themselves from responsibility to you by telling themselves and you; “You are no worse off than anyone else.” This could mean that my pain for having my third beach house fall into the ocean is equal to your cancer. You never know. This helps them avoid responsibility for how they treat you – avoid or rationalize it away. They are disturbed by any association with someone who lives in chronic misery even if they do try to hide it. As long as they don’t see it or have to experience any personal consequences, they are fine with it. But if they expect parity they are bound for disappointment. I have been told here that “I don’t love life enough.” “And that I am not right with God – That’s why I suffer”. " His life is so limited. How rich can his love be?" “He has no choice’s”. Or, instead of tenderness, they pay lip service to love while running the other way. " Hurt people hurt people". That’s how they justify their lack of presence and compassion. They don’t realize how toxic they make the life for me, they only imagine you make life toxic for them and you can never get away from them. Remember don’t overlook those good Christians who believe they make it by the goodwill of God. They also believe that you suffer because you do not allow the good grace of God in your life. How do they give themselves leave to do this? They say it’s about them, not you. They are too easily depressed. They are disturbed ( compassionately) by your plight and must take leave. We live in a culture that teaches people to meet adversity with good character. It is often said, “They died in Misery and never complained”. This is a classic remark that praises their own character as it removes them from any sense of responsibility for your condition. People don’t expect or easily accept your short temper or your quickness to irritation or your loneliness. That your reactions can be anti-social. – and when two disabled people come together it can be worse. Unfortunately, lack of public Knowledge also allows conditions and treatment to stay the same or get worse. If the status quo can get you to stop complaining by embarrassing you about complaining, they would rather do that then suffer the toxic effects of being with you. If they can give you drugs to stop your complaining – they will do that too. You will find that as soon as you open your mouth about your problems other people will tell you, in one way or another, that it is a “Character issue”. Where they fail is not in their lack of pity but their ego. Very many people today suffer and die because they stay mute about their problems so as to not become a social or political burden for making the picture uncomfortable to others. So far there is no cure for RSD. There are thousands of people suffering unimaginably because good knowledge is unavailable. One of its symptoms is emotional sensitivity to pain. When emotional stimulus causes my pain to raise my cognitive powers start to leave the room. If you insist on a normal emotional response all that time from me you won’t find that. Without your tolerance, we can not be friends. You must understand that if I am not loving Tuesday afternoon. I will be on Wednesday morning – but you will be gone. If I could fly on a carpet of apologies I would.

The abuse of the disabled stands on historical foundations as old as Mankind – and the struggle to live with the popular social ignorance and scorn just as common now as it was in the times of Christ. The disabled are sometimes too impaired to win arguments. They are, after all, disabled (and probably loners). In the long run, people who judge the disabled are as villainous as any, and certainly, the most disabled of us all. There are people who know better but those are the disabled you will not listen too. I have been told that “I blame other people for my personal problems with healthcare”. When I try to educate people about RSD/CRPS", I only want to spread awareness because I am well qualified to do so and, and can not hide my pain. " Altruism and love are the things that separate us from the animal kingdom. Much of our modern society has developed through social cooperation and empathy. It’s natural to deplore the lack of concern for the humanitarian issues we exhibit. Sorry, but this is much too severe for me to hide from you – just to keep you comfortable. While there is much effort at shallow kindness, there is really very little offered that has weight in general. I find that people are often kind for their social resume but met with the real need they fold like a wet cardboard box. They seldom know who they are, their compassion disappears as soon as they imagine hurt and then their own ego emerges. And that is just the way their compassion is lost. They walk away self-justified. They don’t know why I expect that 8 out of 10 people who read this essay will not know that I am talking about them. If you grow offended because a disabled person behaves in a way that you wouldn’t accept from a “normal”, person then you react without taking their disability and it’s properties into consideration, I say this not to judge you. Sure, there are some great people everywhere but too commonly, there is not for the disabled. It isn’t a matter of intentions. It’s a matter of knowledge. People judge themselves for their own intentions, not actions. These people do not necessarily have the information to react properly. They simply do not have the experience to have any awareness of what they have encountered. There is real concrete political tampering with the whole issue. The moral muscle it takes to earn the title “Compassionate” doesn’t get much exercise. Of course, I see things from a different vantage point – of course, I do – and in a land of conformity to the social blindness that doesn’t deal with widespread suffering, that doesn’t fit well.

Their numbing attitude begins with baby steps and ends in genocide. Sooner or later there are too many people and choices must be made. Who do you think will be valued? I live with this feeling every day. To be disabled is not a medical label as much as it is a social and economic one. You “tax” the environment in every way – and good people don’t like taxes, even from the disabled they otherwise have compassion for. And that’s not good. We will live with a lot of fear as well as pain because of this, even the people who are afraid to tell you will not help you. You learn your “place” very soon while those closest to you do not travel the same path either, isolation is inevitable. Good people will tell themselves they are doing you a favor by not bothering you. So you are left alone – or they will assign your concerns to some imaged other who is more appropriate. You are likely left with no one, *unless you know me".

Compassion seldom outlasts the nuisance value of you who are always sick. The adjustments in their perception that you must try to make, to be understood, are not welcome and are experienced as uncomfortable criticism, or toxic to their health. People don’t understand that I can not separate this sorry sounding profile from my work, as it is how I hope you take its true measure. I hope, despite much hopelessness, to make friends and to be known by someone for my intrinsic worth. I am very fortunate to have a wife who takes her wedding vowels literally. But without an incentive of some kind, I fear others will never understand. They think their avoidance is optional and a personal choice without realizing that EVERYONE ELSE is making the same choice and that our diseases involve social suffering that encircles them in the sum of all symptoms.

From at least World War ll, to now, there hasn’t been a time when genocide hasn’t been going on in some part of the world. Think about it. No? Tends to spoil the beauty of sunsets, doesn’t it? It is the source of energy from which genocide is powered, though.

I, among many, who live isolated and tied to a bed. I can not leave the house without an ambulance. At age seventy, many people I once knew are passed on. I am very lonely and I tend to cling.
I have always been one to point out the obvious. “The king wears no clothes” so don’t feel bad if you suffer and say nothing. If you can fake it then do it. It works better and will be easier for you. Some of us can’t
hide it and are compared negatively to those who still can.

Please read.
http://www.ushmm.org/research/research-in-colle...

and

http://www.bbc.com/news/uk-22058059

And recall that we are moving to “A New World order” in a world considered overpopulated by many.

Keep in mind that disability, generally, comes with aging and doesn’t get better and if it does, the chances that disability might not come back is not a risk a new employer will often take.

They kill horses that suffer without the possibility of resolution from pain and cats and dogs too, but not human beings. I’m told that’s because humans live for higher values. Will somebody please tell my weak spirited friends who are mean because they are ignorant, that I must be living for those higher values. Pain drives you there. Values they may never have to cling to as tightly as I do. (I was told in bmail that I must see myself wearing “sandals”). Insulted for living with the very experience that challenges me and they are privileged not to know. And I assure you that I wish pointless pain on no one, that they may grow spiritually faster.

I believe real Art is revolutionary, intrinsically, and may speak for our collective heart in all its ways. I believe that real Art may be revolutionary in the way that telling the truth is always revolutionary. . .and brave. Above all, it is self-transcendent and its radiant power lifts all who it touches. My intention is to move you, not to always please you, unless you ‘re here for the art. There are lots of people here for the Oxytocin rush. Many people fail to realize that those pleasant hormonal feelings depend on empathy to have them work. Their misfortune is that empathy is a conduit for both pleasant AND unpleasant feelings. To adore a kitten you must also be willing to feel terrible should it be run over by a car. Sorry, that’s just the sad fact of life. The same hormones that bring you love also bring you heartbreak and the general chemistry of it says you can’t have one without the other. If you’d rather I didn’t tell you this than you are one of those people. If you are abashed, you are one of these people. This will not be as rich a place for you as it could be, even if you do keep coming back for more. Even if you work here. Stop persecuting people for the challenges that life hands them with your passive aggressive ways. Passive aggressive can mean dropping them as a follower because of something they have said when in pain. But the worst of all are the ones who think they will give you special attention out of compassion. They expect something greater in return than ordinary social discourse would credit them and are the most bitter when they believe that they have been offended.

The modern world we live in knows that “good feelings sell” and bad feelings don’t mix well, so they wind up twisting us up about our own human nature. More important than feeling good or feeling bad is “living for meaning”. However, you may find that meaning. The meaning has helped humanity live forward through all the necessary suffering there ever was and that’s a thought that warms and inspires me in a pleasant way. It is what helps me get through the day and the longest nights. Expect to be told by false profits that “expecting meaning” is why you suffer. Believing that you suffer for nothing and without purpose is the worst of human fates. If you think love matters at all then you know that it begins with sharing and doesn’t shun the meanings we live for or the feelings. It is, rather, at the heart of them. And no matter what your meanings, do not forget that there are those out there who think suffering is a personal choice, They smile and laugh and play – and they still say ouch when burned, just like we do. They carry in a solid gold frame, a license to disregard you because they think that your predicament is about your choices. They can’t help it that they don’t understand what loving and be being loved can do for us. They don’t know the meaning of the word Humanitarian. It’s the way that they suffer. Burdened with your presence, they find that it’s a choice between you and them. It is the way that they are disabled. Emmanuel Kant reminds us, “if justice perishes, human life on earth has lost it’s meaning” Only for carrying this banner, are we victorious.

My thanks go out to the many people who have contributed to the contents of this composition and their valuable support. You would be surprised to know how many people who post are disabled or suffer from chronic illness. If they are there then they seldom mention it. What does that tell you?

The ways of denial and social exclusion are designed to protect people from the pain of their own empathy. They will tell you that it is about how your character fails you (and them). Many will know how to drop their empathy like a hot coal. They may actually tell you that you are “addicted to your pain”. Only to come by on another day and tell you that you are addicted to the drug solution that you found. They seem to be incapable of realizing how they support our societies structural predisposition to fighting the needs of the suffering and the elderly. It’s called “blaming the victim” – otherwise, how is depriving them of medical care and Social Security going to help? How is depriving those in dire distress of disease helpful? Are you uncomfortable with the bleating need that is painful to your ears? I can tell you how it is handled. I live beyond that line that you only visit. I know – you suffer too. But, you also often tell me that you are going skiing for the weekend and I see that you go where you want to and that you are taking on a lover – and so I don’t believe your empathy reaches deep enough. It just tells me that your suffering is more important to you. (which is exactly what the absence of compassion is). I am outraged at the arrogance of people who try to tell those who are in pain that they aren’t handling it well. Or that it shouldn’t fall on them that you do suffer. QUICK! Mention their denial first. I know for sure that if you cared collectively, there would be much less suffering and so much that you do or say hurts people who could just as easily be you or me. I appreciate the accolades for those heroes who go the extra mile to learn to be concerned – those who you praise for what is extraordinary – for being so rare, and they so often miss the significance of that too. You do cartwheels and handstands when you suffer and smile through your frown so as not to be treated as an “undesirable.” You support the comfortable lie too. I know you think differently in your quiet hours. You know the truth as well as I do when you suffer but forget your experience as soon as someone enters the room. It seems to be that your character peaks only then – when someone is looking. The real message seldom gets through.

This started out as one paragraph and keeps growing with the attacks that I get for writing it. Someday it will be a book – and famous for the mean disdain it draws.

http://en.wikipedia.org/wiki/Man%27s_Search_for...

Feel free to browse or buy, but please remember all these images and writings are copyrighted, and that any copying, altering, editing, displaying or redistribution of any of these images without permission is strictly prohibited.

Thank you!

https://www.youtube.com/watch?v=GHK-d7ToTOI
The Scream by Edvard Munch

Ernie

TheCandle

Some favorite music;

https://www.youtube.com/watch?v=Wdx5nGphnAI

Andrea Bocelli – Con Te Partiro (English lyrics translation)

http://www.youtube.com/watch?v=m8NN4fpdm40

CHRIS BOTTI IN BOSTON | “Emmanuel” w/ Lucia Micarelli | PBS

https://www.youtube.com/watch?v=nPLV7lGbmT4

Maria – Maria Santana

https://www.youtube.com/watch?v=p-y5hwwmk5Q

Chris Botti – A Thousand Kisses Deep

https://www.youtube.com/watch?v=J4YPMiFaPWo

Mighty Sam McClain; “When the Hurt is Over. .”

https://www.youtube.com/watch?v=S5NPriAa8so

Albert Cummings – Lonely Bed

https://www.youtube.com/watch?v=tIfZ8QSG8ko&amp...

Lullaby for Helen – Bill Evans

http://www.youtube.com/watch?v=VmO_0tIGo-4&...

Nina Simone – Feelings (1976) HQ

https://www.youtube.com/watch?v=JOotCVMFncE

Richie Havens “Here Comes the Sun”

https://www.youtube.com/watch?v=RnZ8AXYIEjg

Richie Havens " All Along the Watchtower"

https://www.youtube.com/results?search_query=Jo...

Joe Cocker~You Are So Beautiful

http://www.youtube.com/watch?v=LPn0KFlbqX8

Cyndi Lauper – True Colors

https://www.youtube.com/watch?v=L-5M1_DKvb0

Santanna – While My Guitar Softly Weeps.

http://www.youtube.com/watch?v=cp1-5hDHqFw&...

Ennio Morricone – Malena (Titoli Di Coda)

http://www.youtube.com/watch?v=QHoAg-LlVVM&...

Don Williams Emmy Lou Harris – If I Needed You (with lyrics)

http://www.youtube.com/watch?v=knMrQGHRJ7s&...

Josh Groban Awake Live: Lucia Micarelli – Kashmir

http://www.youtube.com/watch?v=eOkL0aMwZXA

Toots Thielemans – Theme from Midnight Cowboy – European Qua

http://www.youtube.com/watch?v=WVT_i2f6qTw

BEAUTIFUL SADNESS – JANE OLIVER- HERMOSA T

http://www.youtube.com/watch?v=Gd4ozdA4kc8&...

♫ Love Is A Mystery

http://www.youtube.com/watch?v=D6Ye9G3HEsQ&...

So in love – k.d. lang

http://www.youtube.com/watch?v=cO59ITNCxzk

Conway Twitty – The rose

http://www.youtube.com/watch?v=tzHWuzoX1QM&...

Barbra Streisand – If You Go Away (Ne Me Quitte Pas) – 2009

https://www.youtube.com/watch?v=4RYUp7gYHwg

Barbra Streisand – When You Walk Through a Storm.

http://www.youtube.com/watch?v=bgSc8kt95K4&...

Emmanuel – played by Toots Thielemans ( Michel Colombier ) – bar

https://www.youtube.com/watch?v=BA266naCH_0

Santana and Dave Matthews – Love of My Life

https://www.youtube.com/watch?v=Nr29UPrh3CU

Cê – Toots Thielemans – The Brazil Project

https://www.youtube.com/watch?v=ornOqQ5Qodo

Proms 2011 – Cinema Paradiso – theme

  • Joined: March 2011

Journal

Profile revised (excerpt)

2/11/2016 / The ways of denial and social ostracization are designed to protect people from the pain of empathy. They will tell you that it is about how your character fails you (and them). They will tell you that you are “addicted to your pain”. They seem to be incapable of realizing how they support our societies structural predisposition to fighting the needs of the suffering and t…
Posted about 3 years – Leave a comment

(reprint) All Along the Rim

All Along the Rim / All along the rim / between all that is beauty / and the invading armies / of violence / the hate that rushes heavens walls / spills freely / defending us there / are the gossamer forms of weak spirits / shaking their fists at the invasion / of the ugly realities / that invade their pretty minds. / They are pasting the walls / with lovely pictures and soft sentiments / while…
Posted over 3 years – Leave a comment

Still Here

Sorry to be absent . . . / Personal loss has dulled my senses. My feeling nature coming back slowly. Sorry I can’t share more. Everyone most close is still here. / Ernie
Posted almost 4 years – 8 comments

Sorry to be scarce

I have been very very ill. Serous surgeries and hardly able to to note this journal. Thank you for your ongoing loyalties. / Love, Ernie
Posted almost 5 years – 3 comments
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desktop tablet-landscape content-width tablet-portrait workstream-4-across phone-landscape phone-portrait