Having been interviewed by a Contributor to a Web site that provides "timely, in-depth, trusted medical information, personalized tools and resources, and connections to a vast community of leading experts and patients for people seeking to manage and improve their health" ... I looked over the completed interview, and considered the possibility that some, of what was shared there, might be of some benefit to Readers of this site. So, with the blessings of the Interviewer, I am posting the complete interview here. I do hope that You, My Dear Reader, will find some idea or thought to be of use to you as an encouragement, consideration, or, perhaps, a provocation to further thought. I have deleted the name of the medical information site as well as that of the individual mentioned in the Interviewer's introduction to the interview. The interview is, otherwise, unedited.
How to Cope When Your Adult Child has a Physical Disability
I was looking over the questions asked here at [DELETED] and I began to smile as I re-discovered a question from a lady named "[DELETED]." And just by the sweet nature of how she posed her question, there was no doubt in my mind that her moniker was quite accurate. She was worried about her adult son who had been diagnosed with MS. And although the title of her question was: "Can MS affect the ability to match clothing (plaids with stripes) and colors?" the true intent of her question was to be found in reading between the lines.
This was a mom who was worried about her son's disease and how he would manage the potential physical and mental challenges that Multiple Sclerosis could bring. I began to think about this disease from a parent's perspective. No matter how young or old your child is...they are always still your child. How does a parent cope when their child faces the daunting challenge of a physical disability? What is the best way to be of help?
In order to delve more deeply into these questions I have enlisted the help of fellow blogger and self help writer, John Michael. John Michael's extraordinary way of writing stems from having to face his own unique challenges including parenting a son who has cerebral palsy. You may find more of John Michael's insights by visiting his blog authentically entitled, "Just being John Michael." http://justbeingjohnmichael.blogspot.com/
Based upon your life experience, what comfort would you give to a parent who has an adult child who is facing physical challenges?
To begin with, please know that I do not, in even the most remote way, hold my opinions or ideas up as any kind of standard of measure or (God forbid) sort of rule to go by. They are, quite simply, my own perspective and individualized inclinations. That said, I can tell you (and any Parent reading) that my comfort with what Matthew (my son) and I share, in our partnership in life’s challenges, began with my acceptance of, the reality that we all … every living, breathing, struggling one of us, live with our own set of ‘disabilities’ and ‘handicaps.’
While Matt’s are more obvious and clearly pronounced than others’, I have accepted the fact of my responsibility to confront and manage my own … and to help him identify (in the most gentle and tenderly ways possible), and deal with his. I have, simultaneously, allowed my Self to be open to, and receptive to, the difficulties and frustrations in the lives of those whose life-paths intersect mine. And I discuss, with Matt, these obstacles, to ease-of-living, so that he can share, with me, an active appreciation, of the hurdles that beset others. We discuss possible ways that we can compliment and make easier the lives of Friends. And we have conversations centered around our responsibilities, as Human Beings, to the world around us. This has given him a sense of participation and worth, in caring for people along the way … and has (while not spelling out or focusing on his own set of Complications) allowed him to gain a sense of worth as a Care-Giver for others. It, also, takes the intensity of focus off of all of the daily irritations that his cerebral palsy unrelentingly visits upon him.
This “Mechanism” (if you will) has proven to be a ‘tool’ of some considerable worth in my set of ‘coping implements’ … for us both.
How emotionally difficult is it for a parent to see their son or daughter unable to do things that others may take for granted?
The “emotional difficulty” is compounded by the reality that (in Matt’s life) he does not possess the mental acuity to enable him to thoroughly process the complexities of his handicaps. While he is at a high level of what would be labeled as “trainable” (God! How I do hate those labels!) he is obviously vexed by his awareness of the areas of life and living that are part of the experiences of those around him … and his inability to participate or be included in them.
I then, accept the responsibility (inasmuch as I am able) to “feel” and “sense” these vexations for and with him … then translate them into means of communicating to his level of comprehension and appreciation of them … to him. All the while wanting (at my emotional core) to curl up in a corner and weep for him. Emotional exhaustion and an ever-present sense of being emotionally spent has, consequently, been my life-companion.
How does a parent express concern for their child's well being without coming across as overly intrusive or pushy?
In a word … you can’t! Yep! That’s about it. My experience has been that if I am willing to let Individuals or Organizations … whose role or mission in life is to ’administer’ the programs or services (I use the word advisedly) that are intended, by well-meaning Initiators, to reach out to the needs of those who find themselves less than optimally functional … operate at their own discretion or with their own set of priorities … my son will suffer neglect and even some measure of abuse.
Yes, I know that that sounds harsh. And I do wish that it was not the fact. But it has proven, over and over, to be the Reality. But … when I take the active, involved, persistent, and (in the view of some) “overly intrusive or pushy”, I have found that I can cut through the layers of superficial and uncaring individuals and programs … and mine the nuggets of wonderfully committed and professionally devoted gems who give of themselves willingly and thoroughly, for the benefit of those to whom they have dedicated their lives and careers.
So, I make Matt the “Good Guy”, and take the mantle of “Enforcer” upon myself, for his benefit. This has worked out to be most successful and beneficial for all concerned. It gets past the layers of incompetence and wasted time and efforts quite quickly. And gets us to the “good stuff” with a minimum of wasted energy and emotion (which, by virtue of living with this situation, are already in short supply.)
What is the best way for a parent to offer help?
I think that this is most effectively accomplished by becoming a living and breathing part of my son. I have permitted my Self … nay, demanded of my Self … to be … actually and legitimately become an element of my son’s Being. I feel what he is unable to feel. I think what he hasn’t the capacity to think. I sense what he wants to sense, but can not get through the haze, of his brain’s unwillingness to cooperate, to sense. I offer tears when appropriate … whilst not giving in to self-pity. I offer determination … where he is not equipped to be determined for himself … whilst guarding against insensitivity or lack of empathy. All the while recognizing that this commitment to Matt is made at the expense of other life-demands that must be sacrificed (willingly … even happily … and without remorse of bitter regret) for his ultimate benefit.
All too often, I have known parents who let it be known that they are some figure of “Noble Sacrifice” and are ’giving up’ something for their child. Horse hockey! (That’s about as ’cleaned up’ as I can make that. [smile]) Firstly, their child is constantly aware of this added burden upon their shoulders. They hear and sense their parent’s bemoaning of their ’plight’ in life. And that child has this ’gift’ to deal with, in addition to all of the garbage that is incumbent with whatever life has given them.
No! My son’s handicap is something that I accepted, at the very outset (when he was diagnosed, at less than one year old), as Life’s enabling me to grow and develop into far more than I ever would have, otherwise. I had to become more of whatever a man can be … to be what my son needs his father to be. I accepted Life’s challenge to develop Character and Strength that I would never have known without the demands and needs of my son’s circumstances. Matthew has only sensed and known the reality that I am indebted to him for my life’s flourishing. And he has a comfortable and calm assurance that I appreciate him … far beyond his cognitive abilities to reason out those truths.
These are my own perceptions of the best ways that I can be of help to my son … and simultaneously, my Self. Best summed up in ... give. (Which, I suppose, is the best way to benefit any relationship.)
Can you give any advice to the parent who has been seemingly pushed away after offering help to their adult child?
This question stings.
Three years ago, Matthew phoned me and asked me to cease phoning him, and/or seeing him. “When you call or we are together, it upsets Mom. And that makes me nervous. And I can’t deal with it.” he said. Understanding his Mom’s temperament and personality (which I have [Thank Goodness] taken a good deal of time and invested a considerable amount of effort in studying), I understood what he was saying. So, I agreed. And said, “Goodbye.”
Because I have an absolute certainty that Matt’s ability to make that phone call to me was born of all that we accomplished over the thirty two years prior to the call … and I know the stresses and tensions that he was referencing (after twenty years of marriage to his Mom) … and my certainty that I can look Life full in ’the face’ and give an honest account of my Self, and my having given absolutely all of all that I had of Me, to him … I have accepted, and respect, his choice.
For me to demand some form or sort of “Parental Rights” in maintaining contact with Matt, would be an exercise in selfishness. It would be at the expense of his comfort and tranquility. And it would serve no purpose other than negative ones, including putting him in the center of a tug-of-war that would render no possible benefit of value. So, I have had no contact with the Son who I spent every week-day, of every year, after he ’graduated’ from school (9 years) … for nearly three years now. Hence the “sting.”
In your experience of parenting your own child who has a physical disability, what was the hardest aspect for you?
The loneliness.
What gave you the greatest joy in parenting your son?
The day that he looked at me and said “My brain doesn’t cooperate sometimes.” It was a bitter-sweet moment in which he attained the level of acknowledging his challenges. This represented a heartbreak in our joining of awareness … and the joy of his readiness to deal with some of his own frustrations.
“The floor is covered with tomatoes” my dinner companion exclaimed. And I turned to look … with the full expectation of seeing some significant ‘spillage,’ by either a patron (for the mode of service there relies on guests carrying their own trays to a table of their choosing), or perhaps a staff member of the establishment. But I immediately saw that what was ’expected,’ was not the case. In fact, what my Friend was pointing out, was the design of the carpet that we were surrounded by. The floor was, quite literally, covered with tomatoes. Big, bright, brilliant tomatoes. Tomato vines that carried the illustrated produce everywhere. There were whole tomatoes; slices of tomato; wedges of tomato; tomatoes seen from their tops; from their sides; bottoms; every possible angle and rendering of a tomato that One could envision … all around us. And I had never known that they were there until the light of Awareness illuminated them to my mind. And I was struck with a realization.
“Doctor Alfred Adler was, once again, right!” I offered. And, as you might expect, my Friend responded with a questioning look. “This demonstrates, so clearly, the truth of what I was fortunate enough to learn, from that late, great Viennese physician (credited as the Father of the theory of “Individual Psychology“), named Alfred Adler. Doctor Adler put forth the theory that states that “Nothing exists … or is ’a Reality’ … to us, until, and unless, we accept it into our individual ’Realm of Phenomenological Awareness.’ Just as that sea of tomatoes that we have had all about us, each and every time that we have dined here, did not exist as a reality to us until you just brought them into your own ’Realm of Phenomenological Awareness,’ and shared their existence, with me. We now know that the name of this restaurant is carried through in the flooring design that we will, never again, be unaware of.” (The name [I know that you are just dying to know, so, My Dear Reader, I will tell you] … is “Sweet Tomatoes.” [grin]) “This illustrates … perfectly … Doctor Adler’s theory.” I continued.
“We all have, at our command, the ability to be cognizant of … or remain oblivious to … every-Thing, and every-One that we share our world with, in every second of our lifetime. And, as you just saw demonstrated in my going over to tell that other Diner how beautifully evident her loving Spirit was, as it was reflected in her countenance … and how her countenance, and its grace, had touched and encouraged my Spirit. Then you saw and heard how a sweet moment of intimate sharing, of life and living matters, evolved from my recognition of a generous and kind Spirit in the young lady who looked after our dinner needs … when I expressed my appreciation of her … to her.”
“Those sorts of opportunities are possible only if and when I first embrace and make ‘Real’ (in my personal ‘Realm of Awareness’), that ‘Phenomenon’ that is that Person. They are, each, a “Tomato” (if you will). A ‘Tomato,” out of a sea of ‘Tomatoes’ surrounding us, that becomes a ’Real’ part of my own ’Reality’ when I chose to become aware … really aware … of them.” This is my mission. This is my quest. To see! To know! To integrate into, and make a vital part of, all that is my personal Truth and Reality, every element and aspect of Life, as I am blessed to be exposed to it.”
“So,” I went on, “you can see that to be judgmental of, or condemning of, your Self … or, heaven forbid, Others … with statements like … ‘How could you behave in that manner, given the circumstances?’ or “Don’t you know that your choices are inappropriate for, or disrespectful of [whatever the example is]?’ … is to make the assumption that you, or the other person in question, were actually aware of the reality of all that you are holding your Self or that One accountable for. When it may very well be, the actual Fact, that those Circumstances or Elements of what you are so aware of at the moment of judgment … simply were not in existence in your own Being or theirs. They, or You, quite simply did not know of the ‘Tomato’ in question, at that moment of decision-making, word-speaking, or notice-taking,” though the big, ripe, red 'Tomato of Circumstance or Fact' is glaringly and unavoidably obvious now.
You see, My darling Reader, there is just so much ‘life-stuff’ demanding a place on our proverbial ‘plate of consideration,’ that for some observer to miscalculate our state of awareness … on any matter … is an altogether very likely possibility … even probability! Hence, I would encourage my Self … and You … to try a bit of respectful consideration with ourselves. A mite of tenderness, perhaps. I would whisper a gentle suggestion to notice some possibilities … some aspects of a situation … some ‘Tomato’ that just may not have been known to us prior to this particular moment in our journey. And instead of issuing an indictment for past failures to think, or speak, or behave in some better fashion … allow some Grace and patient Accommodation that will encourage progressive steps of healthy growth, development, and ultimately … flourishing instead.
This is easily possible … for us all. We can each be a bit more attentive to Life’s opportunities to nurture, forgive, encourage, give succor, and, yes … even love. Those ‘Tomatoes’ of opportunity cover the respective floors of our lives … waiting … wanting … yearning for our notice … and embracing of them. I genuinely hope that You, Dear One, will tenderly give your Self permission to acknowledge new awakenings and revelations in your personal world … every day. I give you my loving promise … You will like the experience … A LOT!
I thought of her whilst having a chat with a special Friend. I was telling of my appreciation of that singularly exquisite instant ... when, in the midst of all of the bombastic grandiosity of some work of symphonic expression, that person, in the percussion section of the orchestra, strikes a pristine note on the unimposing little triangle ... and I thought of that girl, who quietly attended to that contribution to our school band and orchestra. I have thought of her, quite a few times, over the course of this past year. Her unassuming grace, as she patiently endured all of those very long periods of tacet waiting ... counting those measures and bars, that heralded the upcoming moment of required precision, in sounding that unique tonal gift, that highlighted the score.
Always present, and unfailingly constant, was her sweet countenance. I made it a conscious point to watch her, as she applied that tiny mallet to just the right cylinder ... at just the right instant ... with just the right blend of delicacy and decisiveness ... on the chimes. I can recall no one else ever playing that heavenly instrument. It has always been hers. I found an intimate satisfaction and reassurance in her Presence. And I always admired and appreciated the blessing and, yes, even joy that I knew in her being there. But I never expressed my appreciation for, or admiration of, her ... to her. For I did not have, at my disposal, either the confidence, or self awareness, that would have been required to communicate such an emotion, or thought. I had no facility of language, that would have made available the terms or phrase, that could have given her an understanding of what I, as that adolescent, bungling, and awkward sixteen-year-old, was sensing. But today, I can.
So, Dear Emily, I come, today, to thank you for making my world, of all of those years up to, and including, our graduation from high school, a far better place for my Spirit and Soul to live, and develop, in. Thank you, Dear One, for the depth of character, that was an ever-present reality, in your eyes. I thank you for your quietly wry smile, of patient acceptance of my silliness and inanities. And I thank you for your lingering Presence ... that still, today, makes my moments of uncomfortable unease, less distressing ... by reinstalling your beautiful reassurances, of pleasant and tranquil calm. I have always loved the wonder of Who you are. You are one of my most treasured Gifts from a loving Life. There! I have finally let you know! [smile]
Chisel in hand stood a sculpture boy With his marble stock before him, And his eyes lit up with a smile of joy, As an angel-dream passed o'er him.
He carved the dream on that shapeless stone, With many a sharp incision; With heaven's own light the sculpture shone, ... He'd caught that angel-vision.
Children of life are we, as we stand With our lives uncarved before us, Waiting the hour when, at God's command, Our life-dream shall pass o'er us.
If we carve it then on the yielding stone, With many a sharp incision, Its heavenly beauty shall be our own, ... Our lives, that angel-vision.
In response to the 'comment' (see below, right) of my Dear (and very insightful) Friend, 'Lime,' I gave this work some additional consideration. And to free the fuller, potential beauty, that lies within the metaphorical message of this sweet poem ... I offer these thoughts.
While it is so true that some of my most non-compliant characteristics require the severe application of Life's lessons ... that would be akin to the chiseled blows of the stone sculptor ... I am ever-so grateful for the majority, of my life-experience, that is far more in harmony with the creative forces, of the Painter or Sculptor who works with the more-malleable clay.
To have experiences applied to my development with the soft strokes of Life's lovingly applied brush-stroke, is a joy that I eagerly anticipate as I rest in the assurance that the canvas of my Being is taking on a continually improved and more satisfying presence. And to sense the addition of an insight or perspective, as a fresh bit of clay ... to have it tenderly and confidently applied to my willingly submitted form, as I choose to accept its modification of my previous Self ... in complete faith in the generous intent of The Creator ... is always an exciting new adventure.
Thus, when those less-compliant elements of my more-rigid Self require the well-aimed stroke of an occasional chisel blow ... I know that the unfolding work of Life's Designer is always directed toward that 'angel-dream' that will be the Masterpiece of my completed life. It is to this end that I willingly submit my Self to all of Life's artful workings.
I do hope that my little contribution, in no way lessens the impact of this lovely bit of poetry ... but will, instead, allow You, My Darling Reader, to enjoy a more satisfactory enjoyment of it.
Unless expressly stated, all original material, of whatever nature, created by J. Michael Brown (John-Michael) and included in this weblog and any related pages, including the weblog's archives is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.
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"The privilege of a lifetime is BEing who you are.” Joseph Campbell
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Subsequent to twenty years of marriage, and a career in management in the Financial Services Industry (investments, life insurance, and financial planning), I have invested myself in the pursuit of what Joseph Campbell calls "My Bliss." And my bliss is in living, loving, writing, and mentoring.
I find joy in awakening Imagination and endorsing the expression of Emotion in children ... as well as arousing Emotion and awakening child-worthy Imagination in adults.
I live a very simple (some would say primitive) lifestyle. In my solitary and simple life, I enjoy genuine, intimate, and meaningful friendships.
My dream is to write a syndicated column responding to life and living questions posed by individuals seeking a responsible grasp of their personhood and a fuller enjoyment of their world. I would inhabit a cabin or similar place of dwelling, overlooking some body of water, where I will spend tranquil and gentle hours rowing, writing, drawing, and communing with Life.
With their "putting out the 'Welcome' mat," by Listing me on their blogs, these folks have inclined me to visit them Daily.
(One does like visiting where "Welcomed," you know.)
ultimate social bookmark
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Jimmy Carter
about my "lady muse"
You will hear me, quite often, make mention of ... and give respectful credit to ... my Muse (oft referred to, by me, as my Lady Muse.)
In Greek mythology, the Muses are Spirits, who embody the arts and inspire the creation process.
In the Christian doctrine, the ‘Holy Spirit’ is depicted as a 'Counselor' or 'Helper', guiding people in the way of the truth. The Holy Spirit enables a person to access his or her own innate abilities. Through the influence of the Holy Spirit a person sees more clearly the world around him or her and can use his or her mind in ways that exceed his or her usual capacity. Earlier in my life-walk, I was comfortable with this “Holy Spirit” verbiage. I now find it exclusionary. That is, it excludes others of other faiths and persuasions. And, inasmuch as I have come to a personal recognition of the universality of such an influencing ‘Inner Voice’ … I am far more comfortable with my use of the term ‘Muse.’
My personal references to my ‘Lady Muse’ always convey my appreciative respect for Life’s voice (without regard for any single sectarian label), ‘heard’ by my consciousness and made clear in my awareness. My use of the feminine in referring to my ‘Muse’ simply reflects my comfort with a feminine ‘Presence’ in my mental and spiritual functioning.
My ‘Muse’ may speak to me through the voice of another, a book, poem, song, some element of Nature … countless ways. I have found that all that is needed for me to ‘hear’Life speaking to me through that ‘Still Small Voice’ within my Being, is my willingness to “Be still and know …”
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Mohandas Karamchand Gandhi
“The hardest battle you're ever going to fight is the battle to be just you.”
There Is Still Sufficient Time For Sharing Our Thoughts
“Time has no meaning in itself unless we choose to give it significance.”
..... "his light shines" award .....
A lovely, and all-to-kind Expression of the marvelous respect and Love that is our Friendship ... from My Darling Joni.
expressing "namaste" in person
"NAMASTE"
NAMASTE' "The Spirit within me, bows to, and honors ... the Spirit within you."
Embracing Our spirit-kinship
With My 'Brotherly' "Thank You!" ... to Kimberly Drever
“The easiest thing to be in the world is you. The most difficult thing to be is what other people want you to be. Don't let them put you in that position.”
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Albert Einstein
I welcome and encourage your email to me
Please feel completely comfortable with sending me an Email with any comment, suggestion, or idea that you want to share with me. I will, most certainly, send as prompt a reply as is possible. My Email address is:justbnmebrown@juno.com
NAMASTE
“Life lived for tomorrow will always be just a day away from being realized.”
___kind heart award___
From My Cath-Daughter
"comments" and "responses"
Allow me to tell you how I approach this business of "commenting" on your articles.
And how I respond to "comments" that you graciously make on my submissions.
Deliberately ... caringly ... and ONLY after understanding the definition of what my Spirit wants me to see ... I write.
So, I read what you say. I go to your Profile (though I have seen it before.) I refresh my sense of "who you are." I return to what you wrote. I listen for a clear 'voice' from within my Self. And THEN (and ONLY then) I write a "comment" or respond to one.
Yes! It takes time. It takes effort. It takes an investment in You.
But to do less ... would be to show less respect for who you are and what you think ... than I could ever allow my Self to know.
So, I beg your patience, if am a bit slow in my comments or responses. Like the old tale of the Tortoise and the Hare ... this old Tortoise will eventually get there.
NAMASTE
"YOU MAKE MY DAY" FROM ROSE
This "You Make My Day" Award Wrapped in Hugs by Darling Rose
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John Jordan 'Buck' O'Neil
“Love is always open arms. If you close your arms about love you will find that you are left holding only yourself.”
joni's "blogging with purpose" award
With Joni's loving embracing of my "Wheat," and forgiving of my "Chaff."
“Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
NITEBYRD'S PERSONAL " DUST BUNNY IN THE WIND" AWARD FOR BLOGGERS OUTSTANDING IN THEIR FIELD
Awarded (With all appropriate ceremony) by NiteByrd (HerSelf!)
“A single rose can be my garden...a single friend, my world.”
A Very Generous Award
Presented by San Merideth
“There are two big forces at work, external and internal. We have very little control over external forces such as tornadoes, earthquakes, floods, disasters, illness and pain. What really matters is the internal force. How do I respond to those disasters? Over that I have complete control.”
“Love yourself—accept yourself—forgive yourself—and be good to yourself, because without you the rest of us are without a source of many wonderful things.”
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Mother Teresa
My "Adoption " Recognition
We Are Now Cath-Daughter (CD) & John-Dad-Michael (JDM)
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go do it!
Because what the world needs, is people who have come alive."
Please note that all quotations presented in bold, italics are the work of Leo F. Buscaglia
Leo F. Buscaglia
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Joseph Campbell
joseph campbell quotes
“We must let go of the life we have planned, so as to accept the one that is waiting for us.”
“The goal of life is to make your heartbeat match the beat of the universe, to match your nature with Nature.”
“The way to find out about happiness is to keep your mind on those moments when you feel most happy, when you are really happy — not excited, not just thrilled, but deeply happy. This requires a little bit of self-analysis. What is it that makes you happy? Stay with it, no matter what people tell you. This is what is called following your bliss.”
“Follow your bliss and the universe will open doors for you where there were only walls”
“Love is a friendship set to music.”
“It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure.”
“Find a place inside where there's joy, and the joy will burn out the pain.”
“I don't believe people are looking for the meaning of life as much as they are looking for the experience of being alive.”
“When you follow your bliss... doors will open where you would not have thought there would be doors; and where there wouldn't be a door for anyone else.”
“Your sacred space is where you can find yourself again and again.”
“Life is without meaning. You bring the meaning to it. The meaning of life is Whatever you ascribe it to be. Being alive is the meaning.”
“Every religion is true one way or another. It is true when understood metaphorically. But when it gets stuck in its own metaphors, interpreting them as facts, then you are in trouble.”
“The privilege of a lifetime is being who you are.”
“When we quit thinking primarily about ourselves and our own self-preservation, we undergo a truly heroic transformation of consciousness.”
“I think the person who takes a job in order to live - that is to say, for the money - has turned himself into a slave.”
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Louis Daniel 'Satchmo' Armstrong
Before You Go, Please Let Me Say
Your decision to invest this moment of your life here, with me, and my thoughts ... is a compliment and an honor, for which I humbly say "Thank You!" I do hope that you will do me the honor of a return ... real soon.