"Maybe they ought to make it easier to get into trials."
"It should be patient choice if you want a study drug over the "gold standard", which only has a 7% response rate and horrendous side effects. But you have to be debilitated first by the gold standard and watch your disease progress before they let you into the majority of trials."
"They need to make trials more attractive."
"A lot of new drug trials won't let you increase your dosage as new safety and efficacy info comes through. So, as in my case, women all over the world are getting twice the dosage for parp inhibitors that I get and I'm stuck at this dose because I'm in a trial)."
"They also need to make information from the trials more accessible to the patient."
(In a trial involving PARP inhibitors)..."Why shouldn't I be told if there is any PARP inhibition going on in my body. They've got my blood. They could tell me. If the drug isn't doing anything I should know early on and not wait weeks for scans to tell me my cancer is progressing."
"Right now, trials are largely for the benefit of the researchers and pharmaceuticals and patients 15-20 years down the road. They need to make trials for the people who are in them. We're already taking risks and undergoing far more exams and scans than normal."
While we lived in Redstone, Rabbi Harold Kuschner, author of When Bad Things Happen to Good People, spoke at least once every year at the Aspen Chapel. On one occasion, Rabbi Kuschner told of an encounter he had at the Johns Hopkins Medical Center several years ago. As I recall it the story went like this:
Rabbi Kuschner is asked by a patient there, a 32-year old Episcopal Priest dying of AIDS, to come see him. Kuschner agrees, goes down the hall with the medic and meets this young man, as Kuschner says, “pale, emaciated, lying in bed hooked up to several intravenous tubes.”
Kuschner asks, “How are you doing?”
The man replies, “Not too good. But I’m getting used to it.”
Kuschner then asks if the man "... somehow feels that he’s been brushed aside by God, locked out, diminished because of something in his character or behavior."
The young man replies, "No, just the opposite. The only good thing that has come out of this is that I found out something I always wanted to believe is really true. No matter how much I have messed up my life, God hasn’t given up on me. I’ve felt his presence here in the hospital room. God can love me even when I find it hard to love myself."
He pauses to gather his strength before continuing.
"When I was young, I thought I had to be perfect for people to love me.My parents gave me that message, threatening to withhold love every time I offended them. My teachers in school gave me that message. My Sunday school teachers reinforced that lesson. We didn’t go to one of those hellfire and brimstone churches, but we heard a lot about how much pain we were causing God every time we sinned, and I think that was just as bad, especially given the list of things we were told were sins." The young man continues, "I tried so hard to be perfect so that my parents, my teachers, and God would love me. I probably went into the ministry in part so that people would think that I was morally perfect and love me for it. But every time I did something that I knew was wrong and every time I told a lie to cover up for myself, I would hate myself for being such a phony, and I was sure that God was as contemptuous of me as I was of myself. But lying here in this hospital bed , knowing I’m going to die soon, I had this insight: God knows what I am like and God doesn’t hate me, so I don’t have to hate myself. God knows what I’ve done and he loves me anyway. I’ll be leaving the hospital soon, not because I’m getting better but because there’s nothing more they can do for me and they need the bed for someone they can help."
"I don’t know if my congregation will take me back now that they know I’m gay and I have AIDS and I am dying. I hope they will, because there is one last sermon I want to preach to them.I have to share the lesson my illness has taught me. You don’t have to be perfect. Just do your best and God will accept you as your are. Don’t expect your children to be perfect. Love them for their faults, for their trying and stumbling, even as our Father in Heaven loves us."
The Rabbi concludes, “Oh, young man, you’ve got it!You have made a claim, not on the seen, but on the unseen, the unfathomable and undying love of God reaching out for us, whoever we are, whatever our condition, indeed, however distant we may feel, eager to succor, to hold and to sustain us.
In Why God Won’t Go Away, Andrew Newberg et al state that “every religion relies on a form of interconnectedness. There is either a union of mankind with the rest of the world or a union of the individual with a greater individual. ” Andrew Newberg, Eugene G. D'Aquili, Vince Rause (2002) Why God Won't Go Away : Brain Science and the Biology of Belief.
In short,• Christianity posits a union of the individual with a greater individual (egoic duality)
• The concept of a union of mankind with the rest of the universe is found in Hinduism and Buddhism (wegoic non-duality)
As you might infer from my earlier remarks about the “egoic” perspective, I have a problem with the former view. My problem is that it implies that God (presumably the greater individual) is out there somewhere; furthermore, that each individual’s relationship is with God alone – that my relationship with you – whether we are linked by love or hate – is irrelevant. (When I was writing this, I initially used the word immaterial, but that’s the whole point of this discourse, relationships are not material objects, so I had to change the word to irrelevant).
In contrast, the latter conception, which Cynthia Bourgeault refers to as a “wegoic” perspective, is consistent with the tenets of Contemplative Christianity, as well as Buddhism and Hinduism -- this non-dual union of mankind with the rest of the universe, is more appealing to me, because it suggests that you and I are, willy-nilly, part of a web of relationships, individual figures on a shared ground. The ground is the contextual “glue’ that holds us together.
This figure-ground relationship forms a pattern, the significance of which each of us perceives and interprets in his or her own way. This emergent pattern for each individual is unique, but sufficiently similar to the perceptions of others to allow us to find kindred souls and gather ourselves into communities, called many things, Truth, Being, the Tao, the Void, and yes, indeed, even God.
What this pattern is called does not matter – square, triangle, Tao, or God. Recognition that there is a pattern is sufficient, what you label it is irrelevant. If it makes you happy and you feel the need, give it a name. This process of pattern recognition is called Gestalt formation.
Research on the brain has recently determined that the brain functions in precisely the same way when visualizing an object as it does when viewing the actual object – i.e. to the brain there is no difference between the image it creates and the object “out there”
The implication that “God" is a gestalt is not meant to trivialize our experience of God, but to suggest that one does not literally have to see God as a “thing out there” to be a believer. Our interconnectedness with and through “God” guides the way in which we choose to interact with each other. And the good news is that God doesn’t go away no matter how well or how poorly we interact with each other.
The concept of interconnectedness as "the heart and soul of our everyday living" transcends labels, political boundaries, and religious dogma.
The representation of interconnectedness found in the doctrine of the Jewel Net of Indra is one which I find particularly appealing.
The doctrine of The Jewel Net of Indra is an ancient view of the universe from Hua-Yen Buddhism. It teaches that the cosmos is like an infinite net of glittering jewels, all-different and each located at the connecting points in the net. In each one, we can see the images of all the others reflected. Each image contains an image of all the other jewels; and also the image of the images of the images, and so ad infinitum. The myriad reflections within each glistening jewel are the essence of the jewel itself, without which it does not exist. Every jewel is a Centre of the universe. Organizing in this image is not a machine. It is more like a hologram. Each part is the whole. Indra's Net is a web of relationships that sparkle, nourish, and amplify. It is an ancient image of oneness and diversity. And it is amazingly consonant with the new story of the universe emerging today at the frontiers of science. (Appreciative Inquiry Consulting: An Invitation to Connect With People Around the World for Creating a Positive Revolution In Change, http://www.aiconsulting.org/charter.htm)
Whatever. No-things matter! The ties that bind us together cannot be seen. they are not of this world, but they cab be made manifest simply by the way each of us chooses to act out our part in the web of relationships, named or nameless, in which we are grounded and made a part of a larger whole.
Think about your web of relationships while you listen to Ellen Stapenhorst's The Gift, Taking Our Lives in Our Hands, or Part of My Heart
Please note: Because the the limitations of Blogger to host audio files, it is necessary to use a third-party host. To avoid copyright infringement issues, please do not download these songs to your computer. You may listen to them by choosing the "Play" option. (First, turn off any music players in use). If you wish to download a song for your own use, please use iTunes or the music source of your choice. Thank you.
Here are three "pictures." What do you see?
1.
Do you see a white square on top of 4 purple discs?
2.
Do you see the solid white triangle superimposed over the triangle bounded in red to form a "Star of David"?
3.
Do you see the outline of the white cube in front of the green circles?
What you have “seen” – the square, the triangle that completes the Star of David, and the cube, -- do not exist any place other than in your own mind.
What is there to seen are colored figures (shapes) on a white ground. It is your mind, and your mind alone, that creates and labels the white shapes. The white "shapes" are the result of the mental process of Gestalt formation - examples of how, without conscious effort, the egoic mind "thingifies" the unseen.
The image above has circulated in Britain since the late 1950s. It contains a face of Christ, but not everyone can see it straight away. The story that goes with it says it was taken by a Chinese photographer who was riding home one day through the snow. According to the story...
His soul was troubled. He had been witnessing a great movement towards Christianity among his friends since the Japanese invasion. He longed to know the truth of what he had been hearing from Christian missionaries.As he rode along he said, "Lord, if I could only see your face, I would believe." Instantly a voice spoke to his heart, "Take a picture. Take a picture."
He looked out at the melting snow forming pools of water and revealing here and there the black earth. It was an unattractive scene. Nevertheless, being thus strangely compelled, the man descended and focused his camera on the snowy roadway.Curious to know the outcome of the incident, he developed the film at once upon returning to his home. Out from the black and white areas of the snow scene a face looked at him, full of tenderness and love - the face of Christ. He became a Christian as a result of this experience.
Provocative thought - "God as Gestalt.""I believe in one God, the Father Almighty, Creator of heaven and earth, of all things (that is, entia or beings) seen and unseen".
"We know that man enjoys a unique position within the sphere of creation: by his body he belongs to the visible world, while by his spiritual soul which vivifies the body, he is as it were on the boundary between the visible and invisible creation. To the latter, according to the Creed which the Church professes in the light of Revelation, belong other beings, purely spiritual, therefore not proper to the visible world, even though present and working therein. They constitute a world apart."
This viewpoint is uniquely Western. According to Cynthia Borgeault, it arises out of an “egoic” perspective based on a subject-object duality under which we implicitly accept the need for a viewer separated from the thing to be viewed. Cynthia then proposes an alternative, a “wegoic” non-dual perspective.
Things seen are tangible, verifiable by touch, sight, or smell. They are accepted as “scientific evidence.”“Contrariwise,” continued Tweedledee, "If it was so, it might be; and if it were so, it would be; but as it isn't, it ain't. That's logic."
Things unseen, intangible, and un-seeable cannot be verified from the “egoic” perspective;” the unseen cannot be touched, seen, or smelled. When we view the world from an “egoic” perspective, based on a subject-object duality, we are implicitly accepting the existence of a viewer separated from the thing to be viewed. We see only “things” out there; after all, "seeing is believing.”Hence, as John Paul II said, things unseen are not of this world. For me, this creates a cognitive dissonance – people of faith do not accept that God does not exist simply because God cannot be seen – which is driven by our innate urge to “thingify” our beliefs into objects that can be seen, through the use of familiar symbols, images, and metaphors. Pope John Paul II alludes to entities in the realm of the unseen as ”angels,” so, of course, we know angels must look just like Roma Downey.
The mind can only see what it is prepared to see.We see the world in terms of our cultural heritage and the capacity of our perceptual organs to deliver culturally predetermined messages to us.
(Jamake Highwater, Blackfeet/Cherokee, (1981): The Primal Mind: Vision and Reality in Indian America.)
How do you and I know this in the absence of verifiable scientific evidence?
Because we have experienced emotions – love, hate, sorrow. We have and hold insights, revelations, epiphanies, ideas, and concepts and, because we believe they are important, we struggle to communicate them to others. This struggle is at the heart of creativity as we seek to find a means to re-present our insights and feelings. But the best we can do in this “thingification” process is to create a “mind map” in the form of a painting, a poem, a piece of music, sermon or some other form of intellectualized experience.But my re-presentation is not the real thing --- Alford Korzybski's dictum, "the map is not the territory." Furthermore, because this re-presentation is grounded in my own unique cultural heritage and experiences, it is even more difficult for anyone else to see and to accept it as reality.
[View my self-description, "What Language Do You Speak," in the sidebar](To be continued)
The last image is a chart of the actual dosages received, color-coded to Image 2.
With a maximum dosage of 3740.33 cGy, the chart indicates the primary target area received a mean dosage of 3241.68 CGy (86.62%). With a maximum dosage of of 3439,69 cGy, the larger light orange secondary containing target area received a mean dosage of 3146.36 cGy (91.47%). Radiation exposure to the adjoining areas (lungs, heart, esophagus) was significantly lower, well below the threshold of damage danger.
