Healing Is In The Eye of the Beholder

                         

     Given my well illustrated feeling to the left, I am on vacation from winter, life and blogging for a few days.  My wife of 29 or 30 years, depending on how you count, Sharon provided me with a piece of her recent writing which is a great stand-in for some of my usual and unorthodox posts.  It's her reflection on a recent support group meeting she attended, probably the first and last of this nature. Since I have patiently listened to the story repeatedly for the past week, it's your turn.  Blessings!!

     We all stood outside in the cold waiting for the library doors to open.  None of us knew each other so we were not speaking.  I was here because  sometimes  I venture forth to find a support network for myself and my family.   I looked around at the others standing huddled close, fantasizing about the possible scenarios they had all left that morning in their own homes. 

     Something was awry.  I was noticing the walking canes, the slurred speech, the crooked gait – all fairly typical of folks who have experienced some form of brain injury – the walking wounded.  The support group had been advertised as a group for caregivers of brain-injury survivors.  I don’t know what caregivers are supposed to look like but I was feeling out of place.  I had left my non-verbal, wheel-chair bound son home, safe and sound with his father.  I came to this group to replenish myself, to make a community connection, perhaps to make a new friend. 

    I had my book, CERAMIC TO CLAY in hand.  What better place to share my writing than with other folks who were living my life with their loved ones? 

    We moved slowly into the meeting room, grateful to be out of the cold.  There were about a dozen of us, each taking a seat around a huge table.  I kept sneaking surreptitious glances at the others in the room.  Within a short time it became obvious to me that I was one of the few in the room who had not suffered a brain injury.  I live with brain injury but I do not live brain-injured.  All of the folks in the room arrived to the group on their own, except for one man whose parents accompanied him.  This meant that they were all driving, despite their wounds.  To me, the mother of a severely brain-injured son, the people in this room were in a very different category – walking, talking, driving, working, advocating and seeking support for themselves.  I sat there wondering if they were the lucky ones, brain-injured and independent.

    The group facilitator made some  introductions and briefly told his story as a brain injury survivor from a car accident.  One story followed another – stroke, aneurysm, more car accidents, motorcycle collision, horsebackriding fall, seizure.  One mother spoke – her son was placed in a neuro rehab center a few hours away – he had contracted encephalitis about ten years ago and now suffered short term memory loss.  He lived on a locked ward though she felt blessed that he could think, read, write, and speak.  He just couldn’t remember where he was so she felt that he needed to be locked away for safety reasons.  I listened to this story with a huge lump in my throat – judgment was seeping through my thoughts  but I kept quiet.  Emprisonment or rehabilitation?   

    At one point I did ask about the group membership and I was told that it was not uncommon for groups like this to begin with a mix of caregivers and survivors.  We would see how the group worked and divide if necessary. 

     I tried to be open to this experience.  I certainly felt compassion for the people in the room.  They each waged a continuing battle with the devastating impact of brain injury. I knew that, no matter the severity of the injury, the journey was intense.   I watched as the group members bonded over their experiences, smiling, nodding, and crying with one another.  I tried to participate and when it was my turn to speak I told my son’s story, my family’s story.   Though people listened politely I never felt nor heard any connection.  They were walking and talking!  They also knew nothing about  alternative approaches to brain injury so I felt like I was speaking a foreign language.  A few had a relatively new brain injury whilst others had lived for many years with their fallout.  Some of their stories involved this theme: brain injury leads to depression leads to substance abuse.  Their stories were filled with pain, frustration, chaos, impotence,sadness and fear.  I kept wondering what was missing in their rehabilitation or in their community.

    I soon realized that I would not have my needs met in this setting.  In the years following my son’s accident I had many experiences with groups of parents and their brain-injured children.  We would tell our stories, describe our challenges and those of our children, share strategies and therapies and always walk away feeling comforted and validated.  The world of blogging and internet support groups also fulfills that need.  The people in this group were struggling and perhaps some of their pain would be eased by sitting with others who shared the same reality.   It was a strange experience for me, enlightening to some degree but not one I needed to repeat.  I left with no regret and returned to my home and my son with the belief that he was in the best place possible and he, in many ways, had a better quality of life.  Though my son is non-verbal it would be absurd to not acknowledge that he has a multi-layered emotional life.  We have done many things over the years to help him work through the trauma of his accident.  He may have moments and days of frustration but generally he is one happy and peaceful young man.   He is not alone!! 


P.S. I will return....

The Sale of Hope, The Promise of Cure, Sometimes At A Discount, Part 1

ADDENDUM:  Recent developments in DR Stem Cell Programs and it's not good!

       There is no population more fragile nor desperately searching for the hand of cure than the parents of the disabled.  There is no greater dread, no greater fear, no darker empty space than the loss of child.  There is no greater source of anxiety than a parent's knowledge that their severely compromised child may outlive them.  There is no greater pain which is felt at the core than a parent's sight of their child in agony, seizing, intubated, unable to move or speak.  Parents who I have come to know would readily trade places with their child because their pain is so deep.
       There is no deeper crevice in hell than that place reserved for those who sell false hope to parents of the disabled and make claims which are incapable of substantiation or who refuse to allow for a thorough examination and review of their claims.  The only charlatans who have an even lower place in hell are those who couple their claims with evangelization and religion.

       I blog, I read many blogs, I join many yahoo health groups, sometimes just lurking.  Many parents of the severely disabled also lurk, share very sad and difficult stories, seek friendship and compassion and above all search for answers which too many are willing to provide.  The most dangerous places on the web are the heavily moderated groups which allow for no questioning, no dissent, no requests for research studies or documentation of success...but do encourage stories of desperate woe and miraculous cure.  These moderators are the modern day "snake oil" salesmen.  Today, they sell stem cell therapy for the disabled and dying, coupled with the repetitive Bible quoting, and off-shore.  Parents flock to these groups, too wearied by life to deeply search for the truth of this hope.
       I have joined a number of dedicated stem cell groups.  I can say that the parents are among the most honest and desperate I have met.  The moderators, especially for the programs in the stem cell programs are vile.  They will not allow posts which relate to embryonic stem cells, they will not allow posts which request authentication beyond parent testimonials, they will not allow posts which question the role of placebo or normally expected change and development.  They will not provide answers to nor allow posts which ask for the backgrounds, qualifications, research and publications of the stem cell centers doctors. God forbid that you ask why they use adipose versus pluripotent stem cells? In many cases that I have researched, the M.D.'s name is virtually unknown by any search engine and Medline has no listing of any research they conducted.  Medra's medical guru is a psychiatrist.  The new Dominican Republic "Stem Cell Project" has a medical director who is "unGoogleable" but was an evangelist for 17 years (credentials to which I would entrust my son?). I forget he's taking a 4 day workshop in stem cell..... Google produces no results except press releases through yahoo chat groups.  His comments to questions in StemCellsDR are also connected to "in Him" stuff.  Strangely he is  linked to the controversial developer of the now defunct "Miracle Mountain" HBOT programs.  Lately I have found links to the Domincan Republic programs in fundamentalist sites, i.e. Damascus Road.

     There are no active and viable web sites for these places with pictures, description of facilities or listing of staff and credentials.  They are all off-shore where there is little regulation of medical practice.  Some attract parents' attention because of low prices, other because they are coupled with a hotel and nice vacation package, others because they boast of stories which are unverifiable.  Ironically, others are packaged with fundamentalist Christian themes.  Delusions or Deceptions?  Maybe a little of each.
       Given a son with quite severe brain injury, I have spent an inordinate amount of time and spoken with many people.  Some have spent $30,000.00 for a treatment and have noticed small gains which could be attributed to a host of factors including placebo, normal development or outcome expectations.  The new Dominican Republic programs promise treatment of less than $5,000.00.
       No advice as to which way to proceed; just a host of cautions.  Stem cell research is in its infancy. Getting the cells to the place they are supposed to be and having them switch on the regulatory process is a very complex matter.  We need to remember that there is still no cure for the common cold.  I suspect that this cold will be cured before there is a cure for genetic anomalies, cerebral palsy, autism, spasticity or severed spinal cords.  There is a distant hope and promise, but we are not there yet.  It is so very important to validate these off-shore claims.  If the iterations of cure and vast improvement were real, every clinic in the US would establish stem cell centers...think of the money that could be generated from health insurance providers.

Chase Britton, Boy Without a Cerebellum, Baffles Doctors

Chase Britton, Boy Without a Cerebellum, Baffles Doctors

An absolutely fascinating story about a boy who is now three years old and was born without a cerebellum or a pons.  He is crawling, grabbing objects, walking in a gait trainer, etc.  The story is a testament to what doctors (especially neurologists) DO NOT KNOW about the functions of the human brain.

Additional information is available on Chase's blog.

Lupercalia

        Lupercalia was a very ancient, possibly pre-Roman pastoral festival, observed from February 13th through February 15th in order to avert evil spirits and purify the city, releasing health and fertility.  Lupercalia subsumed Februa, a possibly earlier spring cleaning ritual held on the same date which gives February its name. (Wikipedia)
        In the latter part of the fifth century, Lupercalia evolved into a possibly sordid trend which perhaps focused more on fertility than on health.  At the end of the post is a bit more graphic expose of the feast.  Anyway, Pope Gelinus  felt the need for a more chaste and platonic celebration of this feast, so he declared that a saint by the name of Valentine should be appointed as patron of "true lovers".  Of course, Valentine probably was just another imaginary playmate in the Roman Catholic dynasty. Olde Gelinus choose the 14th of February to celebrate (why three days of raucous activity when you could confine the feast to one).  We, of course, re-paganized the 14th of February to be declared, at least in a few places on earth as simply Valentine's Day...a day to profess love with simplistic cards and imported flowers.  I could not let the 14th lie still, without a celebration in this blog, so..

My trinity, Aimee, Adam, Sharon

         Since my childhood, I admit that I have  never developed a facility for emotional expressiveness, you know that touchy-feely stuff borne in the 70's.  However, given the solemnity of this day, here is my humble attempt.  Sharon, Aimee and Adam are the life I always wanted.  They embody all that I care for and all that I love.  There are a constant, they are here, they feel deeply and together we have learned so very much about life...we have learned from each other on this disability wagon train.  It's a privileged journey and a sacred bonding.  Adam confided to his clairvoyant buddy some very ancient wisdom:  "Love is being present...even when you don't have to be."  The simple act of presence, selflessly given, is the ultimate expression of love.  "Being present" seeks no reciprocation, is not pompous, is a pure act of giving...it is life affirming life.  And so I profess my love for my "trinity" publicly.  Today is their day...a celebration and expression of being present for each  other.  Happy Valentine's Day, Happy Luprecalia....There are a few others who have also "been there" and today I express my gratitude to those unnamed.  I won't name people because you always leave some out.   You do know who you are!

Painting of Lupercalia

       The real Luprecalia:  Each year on February 15, which occurred closer to Spring in the Roman calendar, there was a festival of purification and fertility.  The Luperci priests gathered on Palentine Hill at the cave of Lupercal.  Vestal virgins brought sacred cakes made from the first grains of the previous year's harvest to the fig tree.  Two naked young men, assisted by the vestal virgins, sacrificed a goat and a dog at the site.  The blood was smeared on the foreheads of the two men and wiped off with wool, drenched with milk.
        The men donned loin clothes made from the skin of the goats (who were probably dead by now).  These same men ran around the boundaries of Rome and struck women with the blood and milk soaked clothes of goat hide.  This February purification brought about good luck, purification and fertility. (Wendy Brinker, 2007)
         Well, the old version of Valentine's Day sure was more exciting...but I guess we'll just settle for protestations of love, cards and flowers.  Ah, for the good olde days!

A Letter from the Source...Responding to my Questions

Dear Phil,

You have posed some very difficult questions, although the answers are frightening simple.  You asked about the nature of suffering and why "good" people and "innocent" people must endure outrageously difficult situations and disabling conditions; why are "evil" people able to evade earthly sanction; why children suffer.  You have asked why the powerful god does not simply heal people, eradicate need of all sorts, allow for an inner serenity for men, women and children.  Why cannot an earthly utopia be designed and sustained?  All good questions, but asked from the mind and heart of an earthly being.

For the last six thousand years, you and your brothers and sisters on earth (and perhaps elsewhere) have attempted to devise answers to questions that plague humanity only based upon your human imagination and your facile depiction of me as a super-human or superman, an architect of the earth, an allower or disallower of events.  I am none of those things.  Your attempts to humanize me have led to your beliefs in Horus, in Mithra, in Izangi, in Kaknu, in Quetzalcoatl, in the Olympians, in Jesus, in Mohammad and in Buddha, to list a few.  These and  a legion of living-dying and rising gods are evidence of your constant and feeble attempts to maintain a system of belief and relieve you of pain and offer the hope of a promise that things will be better here or in the hereafter.  Every civilization has its living, dying and rising god with remarkably identical stories and similar holy books.   I am none of your human inventions, your hopes and your desires.  This lack of understanding is evidenced by your suffering, your restlessness and often, by your delusions.  I do not have a body, nor a brain nor a voice; I do not do things, work miracles or listen to prayers and intercessions.  I just AM.  I do not speak to you (except this one time) nor you to I.  Your are, however, a part of ME.

 I am simply the source, that energy from which all emanates and to which all energy returns.  My energy is love; it creates, it sustains and it heals.  It is a knowledge that all is pure energy at the core. In the beginning, there was energy (always was and always will be).  Sometime eons ago, energy allowed the simple hydrogen molecule to join with others and adaptation and cosmic development occurred; some refer to this as evolution.  As this process was fueled by energy, it became conscious and the human animal was differentiated from the other creatures...this evolution will continue as humans become more conscious.  Evolution results in accidents, many unfortunate. Time is a human invention, it has no meaning.  Your names for me are a human invention and have no meaning.  Meaning is an appreciation, acceptance and understanding of the source as energy and of the personal intensification of that energy.

Your suffering is long, relatively.  Your pain is intense, relatively.  Some die young, some die old...the time involved is relative in terms of eternity.  Evil is evident, yet relative in terms of duration. Your pain is prolonged because you count minutes, hours and years. Your yearning is pronounced, because you want to believe in something which is not and cannot be today.

Energy, positive and pure; wholesome and encompassing; that is who I am.  Energy always was and always will be.  You are part of that energetic field although you are temporarily in the form of matter...energy and evolution of energetic fields have led you here.  Very simply, you are part of everything and will always be part of everything; you will experience every form and variation of energy, as will all humans.  Not quite the dust to dust syndrome, but energy to energy.

As you become more conscious and more highly evolved as a person and a society, you will learn to see, to call upon and to direct energy to heal.  I do not heal, nor do I allow anything or prevent anything.  I do not orchestrate suffering in the young or the old nor do I intervene in the cure of ailment.  All these things happen because energy moves.  You see, everything, everything is one huge force of energy (some call it love).  In the energetic field there are no "greater than or less than humans".  Accidents occur in the evolution of the person.   I do not direct nor correct these happenings...they occur at random, sometimes by accident, but the eventual movement is to the unity of all energy and consciousness...we really are all one, along with our environment, with good and evil.  All elements exist in each of us.

True healers have the ability to know the energy and have the knowledge to move (channel) that energy so people who are depleted can be replenished...medicine is a temporary, cosmetic fix.  The laws of attraction and intention bear some semblance to reality.  We can attract positive energy when we are in tune with it and fill depletion.  We encounter others in our openness to their energy where we are actually able to share their intensity of selflessness.  Without a need for reciprocation, our energy field expands.  Unfortunately, sometimes we can attract negative energy which seeks us out because of what we can "do" for the other...we leaved depleted of the vital force.

You are young and old, able and disabled and severely disabled; you talk well or not at all; you are totally dependent on others or totally independent. It is as it is.  Yet beneath that human identified veneer is always a totally intact and energetically present human being, capable of receiving and giving energy which enhances self and humanity.  You need openness, understanding, humility.  You need to balance the giving or receiving, either extreme produces human and energetic dysfunction.  In totality, this energetic flow and ebb is ME.  As time passes, billions of years or seconds of time, the energy evolves to its pinnacle.

To know this unity is to be happy, to accept others and to validate their sacred existence...without exception.  You need not be able or disabled to be  a fully functioning force today, you simply are.  Your energy can create (heal) and deplete.  Remember there is no higher force than the one which you are and the one which you evolve to...beyond the realm of space and time.

One forgotten gnostic gospel writer had it right, but her documents were destroyed by the people who wanted  to humanize me for their benefit.  She wrote, "Know ye not, that ye are all gods."  We all have the power of the force of the totality of energy.