Tuesday, March 28, 2006


What Neopagans Believe orNeopagan Polytheology 101(Version 5.6.5)Copyright © 1974, 2005 c.e., Isaac Bonewits

Introductory Warnings: I have rewritten this essay many times over the last thirty-plus years, both as “What (Do) Neopagans Believe(?)” and as “What (Do) Neopagan Druids Believe(?)” — the latter title because I wanted my tradition of Druidism to be rooted in those opinions held by most other Neopagans. While fully aware that there are some in the Neopagan community who resist vigorously any attempt to codify Neopagan beliefs, and that some Neopagans — and many Mesopagans — may disagree strongly with one or more of the following statements, I think it is an accurate synthesis of the majority view in the Neopagan movement. I am also making clear in this version what ideas Neopagans generally don’t believe, an increasingly important element in our interfaith dialogues with non-Pagans.

Clarifying our “doctrines” (the things we do and don’t believe) without descending into “dogma” (the things we are ordered to believe or disbelieve by someone in a position of power over us) is a vital step in the growth of any new religious movement. True, I’m something of an “(anti-?)authority figure” within the Neopagan community, yet I have no ability to force anyone to believe or disbelieve anything. Neither do those antagonists who seek to disrupt our community from within by loudly demanding that we draw no lines that might ever exclude anyone, for any reason, ever. The Neopagan community has the right and the duty to define itself and such definitions are made by the majority of our members and leaders — and have been over the last thirty years. Those who insist on waiting to define who and what we are until some mythical 100% consensus can be achieved are being deliberately ingenuous — they know full well that the more people who are involved in an attempt to achieve consensus about any topic, let alone a religious one, the less the chances are of ever succeeding.

Not everyone in the Neopagan community will use the term “belief” in reference to these concepts and many of these concepts have a wide variety of accepted interpretations within Neopaganism. Even so, it’s reasonably easy to list those ideas with which a majority of Neopagans usually agree or disagree, and thus sketch the outlines of our doctrines, just as the members of their faiths could for the Evangelical Christians, Mahayana Buddhists, Sikhs, or Taoists. Do such declarations create “reality” or reflect it? Yes.

By the way, if you’re completely unfamiliar with the terms “Paleopaganism,” “Mesopaganism,” and “Neopaganism,” you can read “Defining Paganism: Paleo-, Meso- and Neo-” for a quick overview. Definitions of other terms used in this essay will be found in my Pagan Glossary. My own interpretations of, and extensions to, the basic Neopagan beliefs listed in this essay will be found in my other writings on this website as well as in future books.

Thou Art God/dess: Neopagans believe that divinity is both immanent (internal) and transcendent (external), with immanence being far more important for people to pay attention to right now. This principle of immanence is frequently phrased as, “Thou art God” or “Thou art Goddess.” (The former phrase was taken originally from Robert Heinlein’s classic novel, Stranger in a Strange Land, and the Neopagan organization it inspired, the Church of All Worlds.) Deities can manifest at any point in space or time which They might choose, whether externally (through apparent “visitations”) or internally (through the processes known as “inspiration,” “conversation,” “channeling,” and “possession”). This belief often develops among Neopagans into pantheism(“the physical world is divine”), panentheism(“the Gods are everywhere”), animism (“everything is alive”), or monism (“everything that exists is one being”) all of which are concepts accepted by some Neopagans.

Original Sanctity: Neopagans believe that children are born holy, since they have no barriers of consciousness between them and their indwelling deities. So the concept of “original sin” — the idea that all children are born innately evil and have to be cleansed by a magical ceremony before they can become good — is alien to us. Babies arrive in a morally and ethically neutral state, although the reincarnationists among us would claim that tendencies towards certain types of behavior may be carried from previous lifetimes. Because of this reverence for children, Neopagans do not approve of any form of child abuse. Some members of our community may perpetuate the abuse they received growing up in a dysfunctional mainstream culture, but unlike in many other faith communities, such mistreatment is not religiously justified nor excused.

Goddesses and Gods: Neopagans believe that divinity is as likely to manifest in a female form as it is in a male form, and that the word “Goddess” makes just as much sense as “God.” Women and men are spiritually equal, and “masculine” and “feminine” attitudes, values, and roles are of equal importance, regardless of the physical gender of those exercising them. Many Neopagans believe that feminine energies and values are more needed to balance masculine excesses of current cultures. Hence, the common emphasis on Goddesses in our myths and rites, and the presence of “Goddesses-only” worshipers as a significant minority of the Neopagan community.

Polytheism and Pluralism: Neopagans believe in a multiplicity of gods and goddesses, as well as “lesser” beings, many of Whom are worthy of respect, love and worship. We have a wide variety of non-exclusive concepts as to the nature of these entities. While some of us believe in a “Supreme Being,” we don’t anthropomorphise Him/Her/It/Them — i.e., a Supreme Being is not perceived as even remotely humanoid — a concept like the Tao or the “Force” is perhaps closer to an adequate concept. Even when such a Being is part of the picture, Neopaganism as a whole is polytheistic and focuses its attention on the deities associated with our planet.
Within that overall polytheism, much of Neopaganism is “duotheistic” (with female deities seen as aspects of a single Goddess, and male deities as aspects of a single God). A significant minority of Neopagans worship only female deities. Along with polytheism comes a logical tendency towards pluralism, leading thoughtful Neopagans to reject dualistic or “binary” logic systems that paint the universe in terms of black vs. white, in favor of multivalued or “fuzzy” logic systems that accept the astonishing complexity and ambiguity of life, the universe, and everything.

No Gods of Evil: Neopagans do not believe in, respect, or worship any divine or semidivine figure of ultimate Evil, leaving such concepts to the dualistic monotheists. “The Devil” is a character in Christian and Islamic mythology, a blasphemous parody of ancient Paleopagan deities, and an entity we have not the least bit of interest in. Those who insist that our beloved deities are “really demons in disguise,” are simply exhibiting their ignorance, their dualism, and their bigotry, as their predecessors have been doing for centuries. Thus our community says to both the conservative Christian community and its shadow side, the modern Satanist movement, One cannot be a Satanist and a Neopagan at the same time, though it is, perhaps, possible to be a Satanist and a Mesopagan simultaneously.

Nature Worship: Most Neopagans believe it is necessary to respect and love Nature as divine in Her own right, and to accept ourselves as part of Nature and not Her “rulers.” Many of us accept what has come to be known as “the Gaia hypothesis.” As first articulated by Neopagan polytheologian Oberon (then Tim) Zell (and later in secular terms by scientist James Lovelock), it states that the biosphere of our planet is a living Being who is due all the love and support that we, Her children, can give Her. Ecological awareness is a sacred duty and human desires and convenience are not more important than the needs of every other species on our planet. Please note that this last statement is not the extremist position that we and other environmentally concerned movements are often accused of having.

Cautious Technophilia: Most Neopagans believe in accepting the positive aspects of Western science and technology — most of us love our computers! — but also in maintaining an attitude of wariness towards the supposed ethical neutrality of that science and technology. We consider it important that scientists and engineers (like everyone else) pay as much attention to their methods as they do to their goals. Just because it’s possible to do something doesn’t mean we should do it. We have in the Neopagan community significant minorities of both anti-technology neo-Luddites and back-to-the-landers, as well as pro-technology science fiction fans and space exploration supporters.

Positive Ethics: Neopagans believe that ethics and morality should be based upon joy, love, self-esteem, mutual respect, the avoidance of actual harm to ourselves and others — human or nonhuman — and the increase of public benefit. Most Neopagans believe in some variant or another of the principles of “karma,” and many Neopagans will affirm that the results of their actions will always return to them, sooner or later. This belief that “what goes around, comes around,” whether thought of as karmic retribution or as an ecological principle, has a major influence on the ethical choices made by most Neopagans. Thus we try to balance individual needs for personal autonomy and growth with the necessity of paying attention to the impact of our actions on the lives and welfare of others, including other living beings and the environment as a whole (Gaia). This does not deter us from fighting for justice, freedom, and the rights of those who cannot fight for themselves, but it does require us to practice rigorous self-honesty before, during and after we are engaged in such fighting. These beliefs have led many Neopagans to become vegetarians, animal rights activists, pacifists and/or environmental activists.

The Good Life: Neopagans believe that human beings were meant to lead lives filled with joy, love, pleasure, beauty and humor. Most Neopagans are fond of food, drink, music, sex, and bad puns, and consider all of these (except possibly the puns) to be of spiritual value, at least when practiced among consenting adults and not taken to destructive excess. Neopagans may be carnivores, vegetarians, or omnivores, depending upon their individual religious beliefs, but we all approve of good cooking! Some Neopagans abstain from alcoholic beverages, especially if they are members of a Pagans In Recovery group, but most neither abstain themselves nor disapprove of others drinking. Neopagans are enthusiastic about many different forms of music and dance, especially tribal and ecstatic forms.

Assertively Pro-Sexual Attitudes: Many Neopagans consider sexual ecstacy as both a divine blessing and a major source of spiritual growth and enlightenment, though we vary widely in how, with whom, and under what circumstances we seek such ecstacy. Thus many Neopagans are actively involved in Tantric practices and disciplines, whether traditional, reconstructed, or recently synthesized. By and large, the Neopagan community is sympathetic towards many sexual minorities and alternative relationship styles which have been persecuted by monotheistic religions for sexist or erotophobic reasons. A Neopagan may be heterosexual, homosexual, bisexual, transgendered or undecided; may have wildly unusual sexual practices (including celibacy!) or be “plain vanilla” in their tastes. A Neopagan may be in a monogamous relationship, in one or more polyamorous ones, or have no romantic relationships at all. A Neopagan may live in an Industrial Age nuclear family or a traditional or untraditional extended one. As long as all parties involved are happy and healthy, Neopagans will generally approve (or at least not actively disapprove).

Magic and Mystery: Neopagans believe that with proper training, art, discipline and intent, human minds and hearts are fully capable of performing most of the magic and miracles they are ever likely to need. Magical and/or miraculous acts are done through the use of what most of us perceive as natural (some say “divinely granted”) psychic talents, or occasional divine intervention. Most Neopagans seem to accept the laws of magic, outlined in my book “Real Magic,” as accurate descriptions of the way magical phenomena usually behave, though they might not say that they “believe” in these laws any more than a physicist “believes” in the laws of thermodynamics.

Ceremonial Art and Science: Most Neopagans believe that there is an art and/or a science to creating, preparing and performing magical and religious rituals. Our ceremonies are continually evolving as we search for the most intellectually satisfying, artistically beautiful, spiritually powerful, and magically effective rites possible. The use of human or animal sacrifice, though a common accusation, is not part of Neopagan worship, though some meat-eaters may say a blessing over their animals before preparing them for cooking. Animal sacrifice is often a part of some Mesopagan religions such as Santeria, Macumba, Voudoun, etc. Connecting to the CosmosNeopagans believe in the importance of celebrating the solar, lunar and other cycles of our lives. We consciously observe the solstices, equinoxes and the points in between, as well as the phases of the moon. Such “rites of intensification” are human universals, as are the various ceremonies known as “rites of passage” — celebrations of birth, puberty, personal dedication to a given deity or group, marriage, ordination, death, etc. Together these various sorts of observations help us to find ourselves in space and time.

Born Again Paganism: Most Neopagans believe in some sort of afterlife, usually involving rest and recovery in an Otherworld before reincarnating. There is a common belief that we grow spiritually through each lifetime and will continue reincarnating until we have learned all we need to. This aspect of Neopagan polytheology has not been developed very far, perhaps because of Neopaganism’s emphasis on the joys and duties of one’s present life. We have no concept of “eternal” punishment or damnation, and do not accept the “right” of other faith communities to impose their opinions about this (or any other) topic upon us.

Hope and Action: Most Neopagans believe that people have the ability to solve their current problems, both personal and public, and to create a better world, even though we might not all think of ourselves as “utopians.” This vision, tempered with common sense, leads us to a strong commitment to personal and global growth, evolution and balance. Mystic VisionNeopagans believe that people can progress far towards achieving personal growth, evolution and balance through the carefully planned alteration of our “normal” (culturally defined and limited) states of consciousness. Neopagans use both ancient and modern methods of concentration, meditation, reprogramming and ecstasy, including both shamanic and other trance-inducing techniques practiced by Paleopagan and Mesopagan peoples around the world. While some Neopagans may use caffeine, tobacco, sugar, alcohol, or other powerful mind-altering substances in their secular and/or religious lives, Neopagans do not approve of drug abuse or addiction.

Community Responsibility: Most Neopagans believe that human interdependence implies community service. Some of us are active in political, social, ecological and charitable organizations, while others prefer to work for the public good primarily through spiritual means (and many do both). This is yet another reason why Satanists, with their glorification of selfishness as the supreme value, are not Neopagans.

Spiritual Authenticity: Neopagans believe that if we are to achieve any of our goals, we must practice what we preach. Neopaganism, like any other religion, should be a way of life, not merely a weekly or monthly social function. So we must always strive to make our lives consistent with our proclaimed beliefs, difficult as that may be under our particular historical, cultural and economic conditions. Yet an insistance on such effort does not imply an expectation of impeccability — Neopagans know that mortals make mistakes, sometimes grievous ones. The emphasis is, or should be, on reaffirming our commitment to our ideals, not on punishing ourselves or others for past behavior (though we still have to clean up our messes and avoid making new ones).
Spiritual authenticity should not be confused with historical authenticity. Neopagans often make up and teach absurd tales about how their traditions began or continued “underground,” just as members of other religions have done in the infancies of their faiths. Neopagans, however, are not required to believe such nonsense and the community seems to be growing out of this phase much more quickly than mainstream faith communities have managed. As a result, an increasing number of tale-tellers have lost their followings as their students grew beyond their teachers.

Internal Religious Freedom: Most Neopagans believe that healthy religions should have a minimum amount of rigidity and a maximum amount of flexibility. Neopaganism is an assortment of organic religions, which are growing, changing, and producing offshoots, and (though we do have our “orthodox” types) most of us accept these as natural (if sometimes painful) processes. Neopagans almost all believe that monolithic religious organizations and would-be messiahs are a hinderance to spiritual growth. As a general rule, Neopagan groups score very low on my Cult Danger Evaluation Frame.

External Religious Freedom: Most Neopagans believe that it’s difficult for ordinary humans to commit offenses “against the Gods and Goddesses,” short of major crimes such as ecocide or genocide. Our deities are perfectly capable of defending Their own honor without any need for us mortals to punish people (inside or outside of our community) for “blasphemy” or “heresy.” We have no divine mandates to force our beliefs down other people’s throats. Therefore, Neopagans believe in freedom of worship and belief for all religious groups and individuals who are willing to grant us our freedoms in return. Neopagans approve of the separation of church and state and, in the United States, disapprove of the efforts of the Religious Reich to impose their theocratic dictatorship upon all Americans.

Interfaith Cooperation and Self-Defense: Most Neopagans believe in cooperation and ecumenical activities with those members of other faiths who share all or most of these beliefs. It is clear that we have much in common with members of the liberal religious community, such as Unitarian Universalists, Reform Jews, Liberal Catholics, and others. Indeed, the Covenant of Unitarian Universalist Pagans (or CUUPS) has become one of the largest and most active subgroups of the UU Church. However, most Neopagans also believe in resisting efforts by members of dysfunctional religions who seek to take advantage of our idealism. This is true whether they wish to exploit newer members of our community, to take members away from our community through deceptive means, or to parisitically ride upon our political and public educational coattails by falsely claiming to be “just like” us.

Comments and suggestions for improving this essay are eagerly awaited, especially from members of non-Druidic and non-Wiccan Neopagan denominations. I may not be able to respond directly to every bit of feedback received, and will ignore that from antagonists or other flamers, but will take into consideration all thoughtful commentary when revising this material the next time. Please note too, that this is a highly truncated version of an entire book on Neopagan polytheology, and does not claim to speak for Mesopagan or Paleopagan traditions past or present.

Copyright © 1974, 2005 c.e., Isaac Bonewits. This text file may be freely distributed on the Net, provided that no editing is done, the version number is retained, and everything in this notice box is included.
issac's website is at http://www.neopagan.net

~blessed be! sapphoq

Monday, March 27, 2006


My Lost Summer by Elizabeth Evans Fryer
Published by Jamaica Road Press, Cincinnati, Ohio
189 pages, paperback

How did you decide to write your book?
In June 2003 I graduated with a Master’s degree in Professional Writing & Editing, and in one class I wrote a 10,000-word essay on my recovery from a coma when I was 13. After high school, my coma is just something I didn’t think about often; I put it behind me. And then, 18 years later, I was writing an essay on it, and everyone was so interested in the story. It has a human interest element.
Well, the August after I graduated, I went to a writer’s conference in Columbus, Ohio and read part of the essay on open mike night. The next day I just happened to eat lunch with a lady who heard me read who said my story would make a great book. I didn’t think I had a book in me so I didn’t even consider it at the time. But then a year passed and I was still unemployed, still applying for jobs regularly, which was getting tiring. In November 2004 I decided to take a break from writing cover letters and sending out resumes and do some pleasure reading. I came across Cathy Crimmins’ book Where is the Mango Princess? about her and her daughter’s frustrations with her husband as he recovered from a coma. And while I found the story engaging and really interesting, as I hadn’t experienced a coma from the angle of a surviving loved one, I got a bit angry with the author. I kept thinking, “What about your husband? You describe your frustrations with him, but what about his frustrations with you?” Overall, I thought Crimmins was kind of selfish. I thought, “Someone needs to give a voice to coma survivors, who have their own frustrations with family, caregivers, and their lost abilities.” And since I had plenty of time on my hands—being unemployed as I was—and since I had a graduate degree in Professional Writing and was a coma survivor myself, I thought I was the perfect candidate to take on the duty. Plus, I already had 10,000 words of the book done. The essay I wrote in grad school ended up being chapters 10-13. The book is 15 chapters.

What were the most important factors in your rehab?
My mom and my attitude. My mom at the time had her degree in Early Childhood Development, and I think she played a major role in coaching me back to where I am today, which is fully recovered. She brought in games and changed the bulletin board in my room to keep my mind stimulated.
My attitude really helped a lot too. In my book I talk about my sadness with my lost abilities, but I never did get depressed or give up hope that I would be right back where I once was. However, after a couple years, I came to the realization that, physically, I would not ever be back where I was pre-accident. Still, I studied and studied so that I would progress mentally. I finished high school back near the top of my class.

Today do you have any effects from you TBI?
My coma was the result of a horseback-riding accident over 20 years ago. I no longer feel totally at ease on a horse’s back. It’s been a couple years since I’ve ridden. I consider myself fully recovered, but I still have physical symptoms I can say are leftovers from my TBI. I still get double vision some, usually only when I’m tired. My right side is still slightly ataxic, or the movements are a bit uncontrolled. It’s nothing anyone else notices, but I can’t bounce my right leg rhythmically, like a nervous person might do. I mostly brush my teeth left-handed, like I learned to do upon gaining consciousness, and I still do, all these years later. But I do practice right handed a couple times a week, and sometimes I end up jabbing the toothbrush into my gums because of the ataxia on my right side.
I apply eye-makeup left handed because that’s how I learned to do it. I was 14 when I started to wear eye-makeup, just a year after my release from the hospital. If my right side is still a bit ataxic now, you can imagine that a year after my accident I wouldn’t have done well applying mascara right-handed.
I also have a breathing difficulty. It’s like exercise induced asthma, only I recover very quickly once I stop exercising or reduce my intensity. In researching for My Lost Summer, I e-mailed the Director of Pediatric Neurosurgery at Cincinnati’s Children’s Hospital Medical Center asking if my breathing difficulty could somehow be related to my coma. He answered that it is common for survivors of coma due to head injury to have breathing problems, and the problem is likely the result of damage to the brain stem respiratory centers. I thought that was interesting. It was good to know the source of my difficulty after 20 years.

What kind of reception is your book getting?
It’s only been out since the last week of 2005, and already I’ve gotten e-mails from people who’ve recovered from TBI or who have loved ones recovering in the hospital right now. So the book’s getting into the hands of people who it will most benefit. But I’m also getting e-mails from people whose lives have not been touched by TBI, who just think it’s a great story. All the messages I’ve gotten so far are positive.

Is there somewhere people can go to get a preview of the book?
Yes. My Website has excerpts and pictures of me taken at different stages of my recovery. Plus, www.lulu.com/content/173173 carries different excerpts. You can also order the book from there.

Do you have plans to write another book?
No, I don’t. Like I said, I didn’t think I had a book in me. I honestly feel like God’s hand lead my hands as I wrote my story as it’s one that needs to be told. I know it will help make recovery more comfortable for survivors if their loved ones and caregivers read it.

~sapphoq and Elizabeth Evans Fryer

Sunday, March 26, 2006


The "mild" in mild traumatic brain injury or mTBI does not mean mild after-effects. What it means is that the traumatic brain injury/"minor head injury"/ concussion is not life-threatening. Various studies show that 8% of all people with mTBI have permanent disability stemming from the brain injury itself.

A least 35% of mTBI survivors also have either a first-time occurence or exerbation of major depression. mTBI psychiatric inpatients also have longer stays on inpatient units and have a 19% higher chance of rehospitalization than non-mTBI peers. 33% of psychiatric outpatients were found to have had an undiagnosed TBI. The presence of even a mild TBI does have important ramifications for treatment in both mental health and addiction rehabilitation as well as in other medical arenas. More research needs desperately to be conducted in order to learn how to best be of service to those patients who have both an mTBI and a major mental condition.

Survivors of an mTBI one year after injury have shown continued significant changes in core personality as well as continued difficulties with anger, implusivity, mistrust, self-regulation, and ongoing sensory and perceptual distortions. Problems with word-finding and organizational functions are common. It is estimated that at least 75% of all traumatic brain injuries are mild.

Survivors of a mild traumatic brain injury caused by vehicular accidents have more problems with verbal aggressiveness, short-term memory losses, decreased attention and concentration, word-finding, judgement, and decision-making than survivors whose mild traumatic brain injury was caused by sports or recreation accidents.

Those survivors have more difficulty with poor planning and frustration levels. Both groups of survivors have equal difficulties with organization and with emotional lability. Data could not be found by sapphoq comparing the difficulties of survivors whose mild traumatic brain injury was caused by domestic or other violence.

The American Congress of Rehabilitation Medicine in 1993 defined specific criteria for the diagnosis of an mTBI:
~loss of consciousness of zero to less than 30 minutes,
~post-traumatic amnesia of zero to less than 24 hours,
~mental alteration existing at the time of the event causing the injury,
~either transient or persistent neurological focal signs.

By definition, those with post-concussive or post-concussion syndrome experience fleeting to no loss of consciousness [LOC] during the actual event of injury. Thus their Glasglow Coma Scale index is 13-15. [The lower the number, the worse off the patient is. 15 is the highest number.] So far, that is the same.

Survivors of a mTBI who report severe headaches, dizziness, and fatigue may then be diagnosed
as having post-concussive syndrome [PCS]. Those with a diagnosis of PCS may also show evidence of difficulties with memory and/or attention, slowed cognitive processing, and learning difficulties. Symptoms are said to typically resolve within three months or so in most survivors who present with PCS.

PCS is diagnosed in women more than in men. This is primarily associated with the presence of pre-existing mental disorders. Poorer outcomes are associated with age-- some sources say the cutoff is over 40 and and others say over 55 years old. Evidence also exist that those who have prior histories of addiction and/or mental conditions and those who are seeking monetary compensation have twice the rate of having a PCS diagnoses after an mTBI than other survivors.

PCS is also twice as likely to be diagnosed in survivors of traumatic brain injury who are seeking satisfaction through litigation. Physicians and attorneys traditionally do not "get along." Some medical researchers claim that post-concussive syndrome is a problem arising out of the desire for monetary compensation coupled with an unwillingness to return to work rather than from the brain injury itself.

Unfortunately, at least 50% of survivors of mild traumatic brain injury who are also
diagnosed with PCS who do settle lawsuits show little mprovement a year after settlement. Studies conducted post-mortem show diffuse axonal damage in humans and in other animals who were diagnosed with mTBI during their lifetimes. Repeated insults to the brain also predict poorer recovery outcomes.

Whether PCS is organic-- related to the insult to the brain itself, or functional-- related to factors which are environmental rather than to the mTBI is an issue that continues to be vigorously debated within the medical community. The jury is still out. It may very well be that PCS arises out of both structural and functional factors together.

Survivors of mTBI who have persistant symptoms and difficulties often have few meaning choices for cognitive rehabilitation. So-called PCS clinics are few and far in-between. Survivors are often forced to navigate the landscape of treatment modalities alone. The professionals they do find to help them with specific difficulties are from varying medical disciplines. mTBI survivors may find that they have to assemble their own health care team, advocate for their needs, and be in charge of their own rehabilitation.

They are often prey for less-than-honorable "professionals" who are underqualified or unqualified to offer cognitive rehabilitation services, have to fight for insurance companies to pay for what they do need, have the experience of payment for their medical bills being cut off, subjected to biased insurance "medical" examinations, and confronted with physicians and family members who do not understand why the "concussion" is still causing such gross difficulties. A diagnosis of PCS may also fan the prejuidices of some medical providers who equate PCS with malingering. Some medical providers may not recognize that a diagnosis of PCS means that the patient before them has BRAIN DAMAGE due to a mild traumatic brain injury. Thus, the patient is "blamed" for not getting well within the traditional three month time frame set out for "a mere concussion."

Other things that get in the way of healing [not "curing"] an mTBI can be the presence of an undiagnosed sleep disorder such as apnea, changed reactions to various prescriptions including but not limited to psychiatric medications, and unwillingness of vocational rehabilitation agencies to allow survivors to determine their own work goals and to ease back into a part-time work schedule. Fatigue can be long-term, demonstrable vision problems such as double vision in one or both eyes can contribute to the fatigue of brain injury, and neurological difficulties can point to need for accomodations which may be ignored in "individualized" return-to-work plans.

Every brain injury is different. That nugget of wisdom is something that staff members of state Brain Injury Associations repeat over and over again. That message is clearly not being heard.



Friday, March 24, 2006



Within a circle that is not a circle
In a space and time that are not
The deep of the forest holds a secret
Shining brightly beyond.

I am here because I can no longer tolerate the Lie that would strangle my soul. The Lie that says, "You are cursed if you dare to venture out onto paths unknown." The Lie that claims "This is the way." The Lie that shouts, "You must conform or die."

Traumatic Brain Injury: My traumatic brain injury came as a result of another car slamming my car into a house, leaving a hole in the foundation. I saw the house coming and I thought, "This is it. I'm going to be dead."
I do not remember actually hitting the house. I do remember my head. My head whipping back and forth and up and down. My head hit the car roof numerous times before smashing into another car and stopping.
I also remember concentrating on getting the shock to travel down to my feet, telling myself to stay loose. I did not break any bones.
Nick the old guy from the bait shop across the street heard the metallic grinding. He ran out of his back office yelling, "He didn't even fucking stop!" After slamming into my car, the other driver went careening off down the street where he hit a second car head-on. They all got the broken bones. I got the tbi.
I thought my car was going to be on fire. I did not know that the airbag going off would generate a puff of smoke. I got out. I was surprized to still be alive and I did not want to die burning up in my car.
The ambulance did not come. Finally, after three 9-1-1 calls, the emergency services realized that I was the first part of the accident. Nick went to the police station and yelled at the desk sargeant telling him that I needed help too.
The ambulance worker kept talking to me. All I wanted to do was sleep. I was sooo tired. She kept insisting that I talk back, stay awake, answer her questions. Once at the emergency room, everyone forgot that I had injured my head. X-rays were taken of my face, back, ribs. I was sent home to "rest" after two hours in the emergency room. The aftercare form did not even indicate that I might have a concussion. Touching my head hurt for four months afterwards.
After the emergency room, I went home to sleep. I slept almost constantly for two months, began telling my very old mother-in-law absolutely filthy jokes when I was awake, drank lots of coffee, and fought withsomeone from my [ex-] employer's human services whenever she called. She always managed to call when I was sleeping. She kept insisting that I go to THEIR doctor 34 miles away. I had no car. I could not drive. I could not see straight. I was barely coherent. She kept insisting that I fill out forms. I would send the forms to my lawyer. Filling out forms was very difficult for many months after the accident.
I could no longer read the letters on the teevee screen. I went to a regular eye doctor. He kept shining lights into my eyes [very painful!] and demanding that I follow his finger with my eyes only, not my head [impossible to this day]. At the end of it all he told me that I am near-sighted, told the assistant to write down "post head trauma" and he left the room. She left the room too. I had to get on the internet to find out what "post head trauma" meant. Turns out it was another word for tbi.
I called up the local Resource Center for Independent Living. The disabilitiy advocate there has his own tbi. He suggested I go see 'the special eye doctor.' ['The special eye doctor' was a developmental optometrist.] I did. There, I was treated with respect, allowed to ask all of my questions, and given eight months of vision therapy during the time when the insurance companies were still fighting over who would pay my medical bills. Eventually, I was able to tolerate prism lenses. They help my eyes to focus together. Vision originates in the brain. 80% of traumatic brain injury survivors have vision problems due to the brain injury itself. I was in a majority in that respect.
I also had twenty-four hour headaches-- three kinds. They were billed as tbi migraines. I had two sets of nerve blocks put in by a needle-sticking neurologist before the headaches loosened their grip. The pain doctor [anesthesiologist in private practice] sent me to pool therapy. That and the chiropractor's traction table and a tens unit soothed my many trigger points and body aches.
I got some neuropsych testing done, and a hearing test. I don't have the short-term memory problems that 98% of traumatic brain injury survivors have. Nor do I have the hearing loss or auditory problems that 20% of survivors have. I do have objective vertigo [I am not dizzy but the world spins to the left] due to my vision problems. And I do have a gap in my ability to multi-task that I did not have before. I was told that my multi-tasking ability was dead and that it was not coming back-- except for driving. I have also been told that my balance has now improved to "excellent" in spite of the vertigo; and that it is remarkable that I am able to walk as well as I do. My traumatic brain injury left me with hyperreflexia and a central nervous system tremor. I have some permanent disability due to my traumatic brain injury.
The neuropsychologist recommended a job coach through VESID [OVR or office of vocational rehab in other places]. That did not work out. It took months to get "accepted" by VESID. After that followed ten months of fighting over cognitive rehab. VESID was unwilling to help me unless I could work twenty hours a week. I suffer from enormous fatigue. That was [and to date still is] an impossibility. The VESID professionals wanted me to apply for medicaid in order to get cognitive rehab. I didn't. Our household income made me ineligible for medicaid in the first place. I did have one stint at cognitive rehab though. It was one of the last things the no-fault ["it ain't our fault so we ain't paying"] automobile insurance company paid for.
I went to "cognitive art therapy rehabilitation" and I found it to be anything but. The basic premise was excellent. I knew that creative expression could be healing and so I was willing to try it. The art therapist referred to the claims adjuster in a letter as the claims "approver." She made some other grammar mistakes in my records which I thought was odd. I could run the office computer better than either she or her assistant could. The final straw for me was her written evaluation about me. It contained several well-known cliches about tbi survivors. It was not me. I did tell her so. I would be nobody's textbook case.
By that time, I had had far enough of being pigeonholed into the tbi mode. The art therapist extradinaire was an alleged graduate of an alleged diploma mill. Her phD was hanging on the wall. I looked up her "school" on the web and that is how I found out. She was making money hand over fist off the backs of the tbi community.
I left. And I quit VESID. If they weren't going to help me, then they needed to get the fuck out of my way. I actively took charge of my own rehab. I continued the stuff I was doing on my own to help myself-- exercise, sleep, cognitive game sites on the internet, a tbi survivor e-list, a tbi chat room, a local tbi support group, two BIA-NYS [brain injury association--new york state] conventions, volunteer work, (r) tetris, coffee, and regular friends.
Recently I went to an ent and found myself signed up for a sleep study. I have been diagnosed with hypersomnia [that means I am over-tired or over-fatigued, depending upon who is doing the talking] and with moderate primary sleep apnea. I went for a c-pap machine calibration just last night. Very soon now, I will have my own c-pap machine and perhaps most of my fatigue will also loosen its stranglehold on my life, just as the headaches were forced to.
One thing I have grown weary off over the past few years is gangs of well-meaning people who feel obligated to tell me that "the brain re-wires." Yes, the brain can do some re-wiring after a tbi. The part that people don't realize is that the re-wiring job is like having a dirt road replace a superhighway. The wires do not all re-wire back to pre-tbi status. Actually, some of them fail to re-connect after re-generation. That is the explanation for the central nervous system tremor.
Every brain injury is different. My own brain injury took my life and tossed it around. I have a few permanent personality changes as well. It may not be the life I used to have and it may not be the life that I signed up for. It is still life. This is my life. My life is sacred because I am sacred. And so are all of you.

~Blessed be!

Wednesday, March 22, 2006


WELCOME to a world of witches and frogs and flying spaghetti monsters. Welcome to a world where traumatic brain injury and healing merge into wholeness. A world where freedom of religion also entails freedom from religion. A world where magic and art meld, and there is hope for us all.

Banished are the diploma mills graduates and crooked politicians and predators all pretending to be something they are not; insurance medical examinations by physicians paid to declare suffering as non-existent or exaggerated, poverty and pain; folks whose job it is to eliminate blogs which may offend the masses of the mindless.

Though the truth and the lie both may bear unequal yet wieldy burdens, let us struggle together for glbt rights, bloggers' rights, and civil rights for all human beings.

Together we can find community and even some love.