AGAIN Chapter 4: A Very Brief History of Reincarnation

Souls are poured from one into another of different kinds of
bodies of the world.
Jesus Christ in Gnostic Gospels: Pistis Sophia

The idea of reincarnation has been around for a long time and one can find it in the Jewish Kabbalah and early Christianity where references to reincarnation in the New Testament were removed. In the Bible: “…the surprising thing is that there is actually a considerable amount of evidence for reincarnation in the Bible we are left with and generally speaking – people are unaware that there are definite references in the New Testament that unequivocally imply reincarnation.” When Emperor Constantine and the Roman Empire adopted Christianity as their official religion, reincarnation was not a part of the deal.

The 6th century found the Second Council of Constantinople formally declaring reincarnation as heresy:
“In the 6th century, in the year 553 A.D. the 2nd Council of Constantinople officially declared reincarnation a heresy and the doctrine of reincarnation was officially banished by the Christian Church…The decision was intended to enable the church to increase its power at that time, and to tighten its hold upon the human mind by telling people their salvation had to be accomplished in one incarnation and one lifetime, and if they didn’t make it, they would go to Hell.” Does this not appear quite motivated?

Dr. Gerard Encausse of the metaphysical Rosicrucian Order, says,
“Has reincarnation been a part of the Christian religion at some time? One can frankly respond in the affirmative to this. Significantly the gospels tell us in plain language that Saint John the Baptist was the reincarnated Elias. This was a mystery and Saint John the Baptist, when questioned, kept quiet but others knew the truth of it.”

Locating this felt pertinent:
“The concept of Reincarnation is quite ancient. It appears to have evolved out of that most ancient of beliefs, upon which all religions were established, the idea of the survival of the soul after death. It seems likely that reincarnation evolved from the idea that humans should have a second chance at rectifying sins committed during their time on Earth. With the original concept, of a single life and death, salvation was not possible. It was widely practiced in Greece amongst certain cults, especially the Brotherhood of Pythagoras, where it was known as Transmigration.”

There has been major interest and activity associated with reincarnation.
“Many cultures throughout the earth’s history have believed in reincarnation or rebirth in one form or another and have taken the subject very seriously, to the point, where to aid those who have been close to mortal demise, they have taken them to their societies birthing chambers, close to where women would be in childbirth. This was done so that the discarnate soul leaving the body would not have far to travel to reincarnate or have rebirth within a new life and this was thought greatly to help the transmigration into the new host and life, therefore allowing rebirth to take place shortly after mortal demise.’

I also found this:
“The classic form of the reincarnation doctrine was formulated in India, but certainly not earlier than the 9th century BC, when the Brahmana writings were composed. After the Upanishads clearly defined the concept between the 7th and the 5th century BC, it was adopted by the other important Eastern religions which originated in India, Buddhism and Jainism. Due to the spread of Buddhism in Asia, reincarnation was later adopted by Chinese Taoism, but not earlier than the 3rd century BC.”

Some prominent thinkers believed in reincarnation; “Among the ancient Greeks, Socrates, Pythagoras, and Plato may be numbered among those who made reincarnation an integral part of their teachings.” The theory of reincarnation is often attributed to Pythagoras, “since he spent some time in Egypt studying its philosophy.” Additionally, Blake, Boehme, Browning, Bruno, Emerson, Flaubert, Freud, Kant, Kipling, Gandhi, Goethe, Jung, Leibniz, Leonardo da Vinci, McTaggart, Origen, Philo Judaeus, Paracelsus, Schiller, Schopenhauer, Sibelius, Spinoza, St. Augustine, Thoreau, Tolstoy, Wagner, Whitman, and Yeats have been associated with the concept, just to name a few. “The concept of reincarnation – that our souls may experience many lifetimes over centuries, maybe even thousands of years – has been present in virtually every culture since ancient times. The Egyptians, Greeks, Romans and Aztecs all believed in the ‘transmigration of souls’ from one body to another after death.”

I found this and thought, wow.
“Tracing the idea of rebirth backwards into remote times, we find that it runs like a golden seam through the thought and teachings of some of these greatest minds and existed too in early cultures. That a belief in reincarnation forms a basic part of many eastern religions is well known. What may be surprising to some is its acceptance by peoples and cultures as diverse as some African tribes and the Eskimos; Australian and Finns, Lapps, Danes and Norse; Pacific Islanders and Celts of Gaul, Wales, England and Ireland. In other words, it is not difficult to make a case for reincarnation.”

Zalman M. Schachter says, “Death did not frighten the pious Jew of old. He had faith in the talmudic contention that death is simply a transition from one life into another, likened to the ease of taking a hair out of milk.”

Rebecca Weiner states:
“Reincarnation, gilgul in Hebrew, is not explicitly mentioned in the Torah, though some interpret traditional Jewish practices to refer to reincarnation. Maimonides has written about the allusion of biblical verses to its occurrence. For example, Daniel 12:13 states, 'now go your way to the end and rest, and you shall arise to your destiny at the end of days.'

A second example can be found in the concept of yibum, when a married man dies childless, tradition holds that his spouse should marry the man’s brother and their first-born should receive the dead father’s name.”

Like Christianity, Judaism has substantial roots in reincarnation. “Many Jews are surprised to learn, or may even wish to deny, that reincarnation...is an integral part of Jewish belief...” This Faith “believed” until the 1800s, when popular western thinking infiltrated Eastern European Jewish society. In many Chassidic and Orthodox Jewish communities, reincarnation continues to be an important foundation of one’s belief. “In Hebrew, it is called ‘gilgul ha’ne’shamot,’ literally the recycling or transmigration of souls.”

Kabbalah uses the Zohar texts: “It is important to understand that in Judaism reincarnation is in no way cruel or fatalistic, as may be found in other traditions. Judaism instructs us to always be concerned to change the reality of this world for the better. For a Jew, the world in which we live exists and has meaning and purpose.”

As long as a person is unsuccessful in his purpose in this world, the Holy One, blessed be He, uproots him and replants him over and over again. (Zohar I 186b)

All souls are subject to reincarnation…” (Zohar II 99b)

Dr. Jacob Neusner explains that the word ‘Midrash’ is based on a Hebrew word meaning ‘interpretation’ or ‘exegesis’. and says “every Jew to ever live, and who ever will live, stood at Mount Sinai when the Jews received the Covenant from God. Reincarnation may help explain how this midrash could be true.” Weiner says, “[t]he purpose of reincarnation is seen as a chance for a soul to achieve a goal not achieved in a previous life and as a chance to reward man for fulfilling the desires of his Creator. Reincarnation has also been viewed as punishment for a sinner’s previous deeds. For example, a rich man who abused his power may come back as poor.”

“Suppressed in Europe, the idea of reincarnation appears in Asia Minor, taught and protected by the Paulinian Gnostics. “The knowledge was deliberately spread to Thrace (modern Bulgaria) and thence throughout the Slavic world. Following the trade routes into central Europe, the doctrine of metempsychosis reappeared in Europe where it was taken up by groups and communities who became known as the Cathars and the Albigenses. Their beliefs became so popular and threatening to the established church that once again persecution broke out, this time in the form of the fanatical Inquisition. Those who escaped to England and their followers became known as the Lollards.

The Renaissance throughout Europe meant a revival of Platonism, interest in the Kabala and the ideas of Pythagoras. That a versatile genius like Leonardo Da Vinci was a reincarnationist comes as no surprise; in his notebooks there are several passages that show clearly that Leonardo accepted the pre-existence of the soul. At about the same time, Paracelsus wrote: “Some children are born from heaven and others are born from hell, because each human being has his inherent tendencies, and these tendencies belong to his spirit, and indicate the state in which he existed before he was born.

Philosopher and dramatist, Giordano Bruno, born in 1548, was put to death in 1600 accused of heresy. Intellectually, he began within the Church but, dissatisfied, he later studied the teachings of earlier reincarnationists – Plato, Hermes, Raymond Lully, Nicolas de Cusa, and others. Threatened with arrest on a charge of heresy he travelled through Europe, lecturing at various universities. His theories were brilliantly developed, he was a true evolutionist and one of the first Europeans to introduce the term ‘Monad (Leibniz later took this up). A fascinating fact about Bruno is that by simply extending his views of the cosmic laws of rebirth (that all movement and manifestation is cyclic, and that the soul incarnates cyclically) to the workings of the physical body, he was the first Westerner to teach the idea of the circulation of the blood.”

In the case of ancient Egypt,
“[t]he Egyptian Book of the Dead describes the travel of the soul into the next world without making any allusions to its return to earth. As it is well known, the ancient Egyptians embalmed the dead in order that the body might be preserved and accompany the soul into that world. This suggests their belief in resurrection rather than in reincarnation. Likewise, in many cases of ancient tribal religions that are credited today with holding to reincarnation, they rather teach the pre-existence of the soul before birth or its independent survival after death. This has no connection with the classic idea of transmigration from one physical body to another according to the demands of an impersonal law such as karma.”

Lately there has been an increasing interest in reincarnation:
“In recent years, a number of influences have brought past lives into present consciousness. The widely read writings of Edgar Cayce, for one, have been surprisingly influential in America, lending credence to the idea that past lives can contribute to illness, emotional difficulties, relationship difficulties, and so on. (I say ‘surprisingly’ because Cayce channeled thousands of past-life readings while in a trance state, even though his Christian-fundamentalist conscious self didn’t initially believe in past lives!) Many people, thanks to Cayce, now understand the idea of karma as the spiritual fallout of good or bad behavior from the soul’s past. Still others have encountered Hindu teachings, in which the idea of reincarnation is central, by being exposed to yoga or reading the popular works of authors such as Caroline Myss and Barbara Brennan on the chakras, the subtle bodies, and energy medicine. The famous Bhagavad-Gita is for sale today in nearly every bookstore.

And who would have expected to see the Dalai Lama vying with the Pope in the bestseller lists? The high-profile presence of Tibetan Buddhist lamas throughout America and the world has profoundly altered the spiritual landscape of Western society. The making of a film like Little Buddha, with its story of a Tibetan lama reborn in the body of a young American boy, would have been unthinkable in Hollywood a generation ago, but now it receives huge acclaim. Nor does an actor like Richard Gere hesitate to profess his Buddhist affiliations publicly. Many people, myself included, have turned to meditation and radically changed our lifestyles after exposure to these powerful emissaries of ancient wisdom.”

Reincarnation as an idea, can tell us a lot about history. When analyzing various sects, religions, peoples, etc., we can study our nature. At times we are eclectic, varied, homogeneous and harmonious. Different ways of being or manifesting speak to our range.

It would be easy to dismiss reincarnation and place it in the realm of fancy but history speaks an alternate story. If we validate certain aspects of history, then why not this aspect? Most approaches to the concept appear to exhibit a certain bias. Additionally, the way each person is going to come to the History I present here, is different. It would be important to note that what I chose to include is suspect. It was arbitrary – what I found on the Internet – and specifically, what fits into my belief-structure.

I do think history is interpretive. Yes, certain events have occurred on specific dates but we give meaning and/or significance to events. In You Never Know, I use the change of the planet Pluto’s status (from being considered a planet) as an example of how we change interpretation over time. History is interesting. We often learn more about what was significant to an era than anything else. Studying History can be very valuable if we stay away from it as fact. I am very willing to explore the history of reincarnation, but I am under no curtain of certitude. It is validating to recognize certain cultures’ beliefs, but these often change. I do not think a culture that is loyal to a belief-system, is outside the realm of change. Members of a culture might have believed something at a given time or still do, but that may alter. Shifts in paradigms or models and instability reign in life, you know. History, like most things, is not stable or secure. We may desire a linear narrative – a story that has a beginning, middle and end – but we will not get one. Our view of History is usually motivated.

Who knew? Chapter 1: La, La

A bird doesn't sing because it has an answer, it sings because it has a song.
Maya Angelou

April 27, 2008 - Years since my first brain surgery (August 13,2003) and coma and I sang my first song. Of course only I knew I was singing “Think of Me” by Andrew Lloyd Webber because I still have a voice and speech impediment called dysarthria. I used to practice this song at The Royal Conservatory of Music in Toronto. I was also asked to sing a song from the musical, Phantom of the Opera, where this song is from, as a guest star with Bitch Diva (Michael Fitzgerald) at Pimblette’s in Toronto. So what precipitated my singing? Well all I can say is it was Andrew Lloyd Webber night on American Idol (2008), which I watched, and a young girl singing prodigy (Nicki Yanofsky) sang the National Anthem at a hockey game that was playing on the television at a restaurant I was at. This really agitated me. I sang in the shower the next day. Later on I sang “Think of Me” from Phantom for my parents and asked them to identify it. My father got it but he said it took a lot of skill. I know I sound awful now so I have to re-configure the experience of singing as something I am doing for myself. I have known for a long time that singing for me was personal but it took a while to absorb: To not give a hoot who heard me. Billie Holiday said; “I hate straight singing. I have to change a tune to my own way of doing it. That's all I know.” I guess that I am singing my own way now.

As I said in You Never Know: A Memoir, it was horrible for me to sing in front of my nephew, Eli. Now I sing Happy Birthday. It still sounds awful but at least I try, eh? I started to practice “Think of Me” in voice therapy in addition to other songs.
Initially, I was concerned my speech/voice pathologist would have difficulty understanding me but she thinks it is an amazing exercise and good for my vocal chords. Who can argue with that? I do not miss singing now but it is like breathing to me. I often hear others sing who are not as good as I was but are now much better than me. I often wonder at the comparison and irony of the situation. If I dwelt on how unfair it was I would be doomed to bitterness. As it stands, I love it when other people sing around me. I only hope they remember I used to sing professionally. I do not want them to stop at all; I think it is more about validation.

I watched the film The Diving Bell and The Butterfly . I used to use the commonalities between us a lot before I saw the film – he wrote his book with one eye that blinked letters and I write my books with one severely bent finger. We both had brain trauma which landed us in the hospital and changed our lives. The gorgeous Jean-Dominique Bauby, AKA Jean-Do Bauby, the former editor of French Elle magazine had Locked-In Syndrome, had one eye sown shut and had a twisted face. He was essentially paralyzed from head to foot: “On December 8, 1995 at the age of 43, Bauby suffered a massive stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. This rare condition is called Locked-in Syndrome, a condition wherein the mental faculties are intact but the entire body is paralyzed.” In the film, which may or may not be an accurate portrayal, he is very bitter and there is a marked before and after quality. I am far from bitter and regard my body now as an evolution or a progression.

The pictures I have of “before” are still me, they are not an avatar. An article entitled, “Avatars for the wheelchair-bound: The value of inclusion in digital spaces,” (Theory and Research in HCI.) explains what “Avatars” are; “Avatars are the representation of the user within digital spaces, and can range from flat, non-animated pictures to pseudo-3D models that explore virtual worlds.”

My history is mine. I looked at older photos for a television broadcast and came to this realization. I majorly had to revise what image meant for me. It is an ongoing process and is definitely one of my challenges. I regard my issue as an opportunity to reconstruct my relationship to beauty in practical terms. My ideas are made concrete. So for the time-being I shall stop the false comparisons. I am not only my physicality.

Some children were watching a CD Rom I gave to a physical therapist that was like a mini documentary. It had stuff I did before on it – some acting and singing – and me now. For the children there was a clear demarcation and some wondered aloud who the “girl before” was. When they discovered it was me, they were incredulous and wondered if I would return to how I was. I know I have gone through a long process regarding my current physicality which most people have not gone through at all. For me to see a continuity now rather than a clear marker is substantial. The children's frank honesty is probably what adults think as well. I remember a camera-person was looking at an old photo I have on my wall with my grandparents. He wondered who that person (me) was. A new attendant was also looking at pictures and assumed I was my mother.

Tamara (speech/voice pathologist) says that there are many ways a person can look different. I wear glasses now, my hair is longer or shorter, I am older etc. Still…A computer technician saw an older picture of me on my computer and asked if that was me – Look, there definitely is a before and after quality to me and I think I would be delusional not to see that. It is difficult for me to be on the opposite side of the spectrum from where I was image-wise but I can do nothing about it. Interesting lesson though. I certainly do not want to misrepresent my looks but I am getting conflicting feedback. Some people acknowledge a shift while others say that I am not so altered.

I am now a different version of the old me. To move on it is necessary to accept the present changes. Of course, I would like to have my old voice and looks - but I do not. I can still communicate – differently. Opting out of image-ideology is so hard for me, but really I have no choice. I have agreed to do a documentary and maybe showing people one can get past challenges will help. Going on camera looking and sounding like this is very hard - but it is worth it if I can reach people. In the Wizard of Oz (1939, Victor Fleming) a curtain is removed to reveal what the actual Wizard looks like. The camera is lifting my curtain.

I do enjoy it when people see what I have done but I keep thinking that my writing right now is equally and maybe more, incredible. My physicality is diminished but in other respects I am achieving quite a bit.

That people regard their working physicality as “better” is kind of odd to me. My parents were at a party and some people compared me to their son who has major mental problems. There is no comparison. I understand that people who need to overcome challenges become a sudden comparison. We all have challenges though. I might need assistance to do certain things and my physicality has changed but really. I got a letter from someone who “wished he had half of the brain I have.” While I feel humbled by his suggestion, there is validation. No matter that I had brain trauma I am more than capable.

Some people wonder if I am sad, depressed or feel a sense of longing when I see old videos of myself. Honestly, I am fine. I used to have major issues about the way I look but there is a sense of pride in people seeing what I have done. Not half as many persons would have been privy to the old me. Even if my lessons are that I was beautiful and talented – which I did not see – I feel privileged for the awareness.
My positive attitude continues to surprise most everyone – including me. There is so much I could be broken about. I was so upset about not getting closure on one of my brain surgeries and my coma that I was sinking into a depression. I could have stayed in that feeling, and this might sound crass, but I chose not to. I honoured my feelings, which have not suddenly disappeared, but I decided to focus on other things. The hell of sadness was something I did not want to add to everything else. Sadness is not a choice, one cannot turn it on or off at will, but for me there was a limit. If I focus on the negative I could bury myself in a hole. I could do drugs, avoid people, and not write books. Hide.

Since appearing on TV for national broadcasts, I take pictures. (My speech/voice pathologist, Tamara, thinks appearing on TV, doing an interview, is remarkable considering I would not use the phone with her 2 years ago.) I might have had substantial concerns with the way I looked or sounded on TV but it was more important to me to reach out to people. Pictures now are less about how I look, and much more about creating memories.

I do not have one picture with my nephew Eli as a baby because I was exceedingly self-conscious about my appearance. I have a new nephew Tomek and will make a concerted effort to include myself in photos. As Napoleon Bonaparte said “a picture is worth a thousand words.”

My very first photo with Eli and Tomek was on June 29, 2008. It was very calculated and like when I first squeezed my mother’s hand and spoke after the coma; I thought a lot about it before I did it. The reality of my appearance might be shocking to some who knew me as I looked before, but I cannot control other’s reactions.
I took a picture with Jeff and Bambie (friends of my parents) and my parents at their wedding anniversary dinner. I was resistant but I am glad I did it. In addition to creating a fond memory it was the best picture I have taken. The symmetry in my face is very encouraging. In the past, passport and medical pictures were quite wonky.

In an article I wrote called “Double Standard?” I say, “Most pictures we choose to represent ourselves are inaccurate, right? Most of us cannot stand our driver’s license or passport pictures. May as well be a movie-star or look like the old me. Drag-identity is liberating. As I will often explain, to me “drag” is not “cross-dressing.” “Drag” is about layers of difference. I find “otherness” preferable to sameness. If my disabilities put me on the fringe – great. If the way I think belies convention, so be it. I am glad that I have a PhD but I do not fit or follow a conventional model of that at all. My “difference” permeates many aspects of my being. The ways in which I present identities now are not false, they are drag.” Identity and image are changeable.

Who Knew? Review

Who Knew? by Romy Shiller, PhD
Review by Jonathan Elliot
http://spritzophrenia.wordpress.com


Five years have passed since Romy Shiller wrote "You Never Know", seven since the operation which changed her life. I met Dr Shiller via her first book and we've since become internet friends. A number of people wanted to know, "what happens next?" and she obliges. In "Who Knew", we meet a deeper, more mature Romy who continues her life as a writer, academic and pop culture critic and brings these skills to reflect on her own situation. This is a Romy wanting to be seen, and not afraid to challenge us.

It’s an uplifting book. Romy says "In many ways I feel lucky". This dichotomy and honesty make the book fascinating. How would you or I cope in such circumstance? Here is insight. Romy's ideas stimulate me, it's not a mere "life story", she draws on many interesting concepts.

Romy is surprised when people find her inspirational, but there's no denying that element to her work. In this respect, it's perhaps we, the able-bodied who are impoverished. "Who Knew" hit me in exactly the right place when I was feeling down about my own circumstances and needed a friend. I don't pretend my life has the challenges Romy’s does, but her thoughts helped me think about my own. Mine are mostly mental and emotional, not physical, though even that distinction is problematic. Coincidentally, I was reading a book on "embodiment" and "personhood" as discovered through robot AI research, which had tie-ins with Romy’s thinking. Her reminder to fight to overcome our so-called limitations, to celebrate them and to see the glass half full was warmly welcome. Celebrating my difference is something I'm working on.

Dr Shiller enjoys her "different" status, but writes "it is hurtful that my diminished physicality becomes a sign to many that I am mentally impaired. There is a huge gap in what people might expect and the reality of my mind." Perhaps it's through my childhood friend David who "walked funny", or through a wheelchair-using friend who couldn't talk, but I never assume mental deficiency in anyone I meet. I wish others would learn to do the same. Romy has earned a PhD, written three books since her operation and numerous articles and academic works, which she's listed at the end of this book. This is part of the "see me" of the new Romy.

When you have "a belief system that values difference, marginalization, alternate realities, and transformation, [Romy’s] reaction makes sense." I see a lot of growth in the current Romy- her views about her physical image have changed and matured. We see evolution in Romy becoming more comfortable being photographed- she's very honest about the dichotomies she finds in herself, both being a feminist and also a woman who is conscious of her physical image. She looks into her past and realises with chagrin that she was beautiful- yet couldn't see it at the time. Oh, the irony.

"I am far from bitter and regard my body now as an evolution or progression". The body changes and ages for all of us- are we able to say the same? Romy was also a stage performer who isn't able to sing in the way she used to: "I only hope they remember", she writes. Being remembered is also a theme of this book. There is a dislike of not being seen as you are, and a dislike of being judged which shows through in this Romy- and also optimism and humour.

Dr Shiller describes herself as a "popular culture critic", because that's what she is. She's not a body-in-circumstance, and her memoirs are only part of who she is, not the whole story. She covers many topics: Sexuality, drag, children, pop culture, Judaism, spiritualities, family, body image, love, feminism, friends. For anyone concerned with body image, sociology of the body, difference, personal growth or any other of the many topics Dr Shiller covers, this is a worthwhile book. Those coming across her work for the first time wouldn't realise her physical limitations, her mind and personality are still bright as a chip.

For Romy, the concept of "drag" is important. (Think "drag queens" if you need context.) Given this was the topic of her PhD thesis it's unsurprising the ways in which she's been able to draw upon these views of embodiment and self-projection to formulate her own ongoing project in "cyborg drag". I think the element of wanting to be "seen" also shows through here.

Do you need to read her first book before this one? I don't think so, though the first volume goes into more detail about her coma and immediate recovery and gives a larger context. “Who Knew” contains more reflection and updates us on her physical condition where appropriate. Great news, Romy is improving! There's a greater degree of honesty, and it appears Romy is learning to be honest with herself too.

While still reliant on assistance she is more critical of family and some friends. In her first book, Romy writes of her family's support. She takes a more critical eye here and opens up about ways in which she doesn't feel supported by her family. I guess we all have family issues to some degree, why should Romy be any different? Perhaps Romy has gained more confidence in asserting herself.

This book finishes with more of a challenge than her first, is perhaps a manifesto: Don't forget me, don't take me for granted. She seems to say "See me, acknowledge me- who I am and what I've achieved. I'm still that person."

All in all, it’s a great read and I’m glad to understand more of the life and mind of Romy Shiller.

AGAIN Chapter 8 :Light

As we live through thousands of dreams in our present life, so is our present life only one of many thousands of such lives which we enter from the other more real life and then return after death. Our life is but one of the dreams of that more real life, and so it is endlessly, until the very last one, the very real the life of God.

Leo Tolstoy

We cannot underestimate the power of white light. This might sound like a hokey idea but I really feel it works. I was asked to describe it and whether it was like florescent lighting. That is absolutely not of what I think. Imagine fusing a white pallet with light. I guess it is like a meditation. As an exercise, imagine you are immersed in it or surrounded by the white light. Imagine it is going into your DNA. It has a healing aspect to it.

An unexplainable white substance appeared near my brain-stem at a very traumatic period following one of my brain surgeries. Everybody, surgeons included, was concerned about it. I do not perceive this sudden appearance as a bad thing. If I could have, I would have told everybody to relax. I think that it was an important facet of my healing journey. If I am considered a “medical mystery” now, and I am, it would not make sense to me to omit this unknown white substance as contributing to the term. I believe I inadvertently saved myself. Rather than viewing the white substance as hurting my progress, I think it helped. I have never discussed my impressions with anyone involved but I am more than willing to do so. An open mind and heart is all that is required. I am sure that what I have to say is unscientific but I have a very educated background so perhaps that will lend credibility to what I have to say.

I think of white light every time I have surgery (which is fairly often now), a procedure or if ever I feel that I am in jeopardy. Beyond a prayer, I feel it works immediately. Also, I am not waiting for any kind of divine affirmation or intervention. It feels active and instant to me, not passive. It can work over time, so it does not help to repeat it but of course one could. It cannot hurt to think of white light. If there is an honest leap of faith, it might be worth trying. All this might sound like wishful thinking but if I can help others in any way, I am more than willing to do whatever it takes. I am sharing this out of hope and as usual, I am willing to bear a burden of criticism.

At death, it is said we move into the white light. A popular belief holds that white light is mystical. It is associated with the unknown and other-worldly. “Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.” To me, light can be love and healing.

I recently told a physiotherapist I have known for years that I thought of white light when I had a procedure that involved seven needles or injections into my left arm. Mostly, the procedure was to reduce my involuntary shaking. It hurt. The physiotherapist asked if I cried and was very surprised when I said that I did not. I have absolutely no problem with crying, so for me, it was an indication that white light can provide protection. There was pain but I did not cry. I would have cried if I had felt like it. If one thinks that a flu shot is bad – well, imagine this. Thinking about white light was comforting to me. Even though my mother was present and I felt very supported, there was something about white light that I trusted. One thing does not replace the other. To me, it is separate and white light can be vital. My integration of white light is not a substitute for anything, it is an amalgamation or addition.

The injection procedure sounds quite dramatic. However, I always call upon white light with the same intensity when I clean my ears. Not as dramatic, but I treat the event as important enough to do this. No needles, no pain at all; an everyday occurrence that most everyone can relate to. For me, white light is a habit like brushing my teeth.

So, white light can be used at any time, under most circumstances. We decide what is important or not. I doubt that white light will eradicate monsoons, earthquakes or tornadoes – natural disasters feel out of reach – but you never know. Trusting in white light is like going with a gut feeling – it is a leap of faith.

AGAIN Chapter 1: Timing Is Everything

It is not more surprising to be born twice than once.

Voltaire

The first law of thermodynamics states that energy cannot be created or destroyed; I guess extrapolation is inevitable. I never thought I would write about reincarnation . I strongly resonate with it.

I used to read about Quantum Physics and reincarnation all the time. (e.g., The Elegant Universe: Superstrings, Hidden Dimensions, and the Quest for the Ultimate Theory, Brian Greene; The God Particle: If the Universe Is the Answer, What Is the Question?, Dick Teresi and Leon Lederman; Many Lives, Many Masters and Through Time Into Healing, Brian L. Weiss, M.D.; Quantum Questions: Mystical Writings of the World’s Great Physicists, Ken Wilber, ed.) It makes sense to me that they would be interconnected. Because "reality" is altered in Quantum Physics, people have a very hard time dealing with it. The idea of an altered reality is shared by reincarnation.

As in that Barbra Streisand film, On a Clear Day You Can See Forever (1970, Vincente Minnelli, dir. Plot summary: A “doctor finds out that she can regress into past lives and different personalities”), I believe we could reincarnate into in the future and past. Differently though, we could live brand new lives – in the past. The thing about reincarnating into the past is that we have to redefine Time. I believe Time can move forward and backward. To me, Time is slippery and unhinged. We better had better be aware of History if we indeed reincarnate into it. Maybe that is why we can have déjà vu experiences (Déjà vu is the certainty that one has witnessed or experienced a new situation previously). So we need to be flexible about fluctuation.

If we do reincarnate, I feel we do so many times. I think a belief is that we only reincarnate once. Multiple lifetimes are difficult for many people to negotiate. I think the implications proliferate. If we change our sex, race, sexual orientation, class etc. over and over again, what could that mean? We would have to re-examine much, including stereotypes.

I remember watching the film Logan’s Run on TV (1976, Michael Anderson, dir. Plot summary: The people in the film “have two choices: They can either take part in an extermination ceremony called 'Carousel' where they are promised of being reborn or they can go on the run and escape to outside the domed city.”). I enjoyed the idea of “renewal” even though the concept in the film involved killing. Being again is comforting. It strongly resonates with the idea of “eternal life.”

I have had an avid interest in this subject all of my life. As a child, of about seven years of age, I read The Reincarnation of Peter Proud (Max Ehrlich, 1973). ). I have had an avid curiosity about this subject all of my life. I also had an interesting recurring dream which you will read about later.

I remember my mother, Lillian, telling me about a dreadful recurring dream she had as a child. In the dream she was a young woman, standing in a line up waiting to have her head chopped off. To this day she hates standing in line. A stranger in Barbados once told her that she was Nefretiti in a previous life. My mom is unsure of reincarnation. For her it has something to do with memory in the DNA. My mother’s parents are from Poland and she, an only child, was born in Russia as her parents fled World War Two. Both of her grandparents were killed in the Holocaust . My mother’s mom was an opera singer and her dad who was a pharmacist acted as my grandmother’s manager during the war to survive. What a story!

As a very little girl I wanted to be an actress when I grew up. I had an image of blond ringlets and a bow tie mouth. Big blue eyes were a part of it. To me, gestures had to be big and over-dramatic. Little was subtle or understated. I remember watching a film on the television where a young woman was tied to railroad tracks and the villain had a big black mustache. The scenario felt very familiar. I feel I was an actress at the beginning of the 20th century in Paris; as though I made silent-films. I guess I could research this but I never have. I have a vivid memory of celebrating Christmas at that time. I see a tree, my children and my husband. Currently, I am Jewish and single. I have no children.

My feeling is that I traveled by ship to North America where I ended up living and dying. I was born in Montreal and currently live in Quebec, a French province in Canada. About 20 years ago, I lived in Paris where I breathed everything French. At the Sorbonne, I attended a course on French Culture. I speak and understand the French language. I have acted on TV, in film, and on stage. My Master’s and PhD are in drama. The affinity for French culture and acting is synchronous.

After brain tumour surgeries, I was in a coma for five months during which most of my dreams involved Nature. In a past life, I feel as if I was a male (yes, changing sexes can be a part of it) Native Indian in harmony with Nature. Some of my favorite activities involved Nature. I used to go camping often and take hikes through the forest. A while ago I had a dream that I was paddling a canoe in a lake surrounded by woods. All I could hear was the dipping of the oars into the water. This was holy to me.

Every time I visit Niagara Falls I experience a déjà vu. There is something so familiar about it. The flatness just before the great fall moves me immensely. When I visited Seville, Spain, I felt as though I had lived there. The orange trees that lined the streets were remarkable and rang a bell in me. The iron gates in front of some homes and the courtyards just beyond were strikingly recognizable. The streets, the smells…

I strongly feel I was a performer during the Commedia dell’arte period in Italy. (Commedia dell’arte “play of professional artists” was a “popular form of improvisational theatre that began in Italy in the 15th century and maintained its popularity through to the 18th century.”) When we studied Commedia dell’arte in Grad School I remember thinking of this and imagining I was there. I adore the Italian language, have always wanted to learn it and basically understand it.

A psychic once told me that I was a priestess for the Goddess Isis. Before that I dreamt I was a blond toddler (I have dark brown hair) being held by the Greek God, Zeus. We were on a cliff, in front of a temple and it was nighttime. The moon shone brightly and lit us up. It is interesting because all of my life I have had extremely poor night-vision.

This “scene” was so clear. It was incredible to me to have a glimpse of what most people see. If I did live in that time, I am certain I would have had in-depth knowledge of Zeus. The symbolism of us being in front of a temple is not lost on me. Now, I love reading about Greek Gods and Goddesses. To me, the legends are colourful and inspiring.

I am extremely spiritual but not religious. Also, my belief in God is different than that of most other people. I feel a loving presence but no body or personality is attached to it. Once I had a dream that God was a copper wave traveling through space; that is close to my belief. If one believes in (a) God, I feel God is created by us in an image that is relatable. Never would I judge anyone on their belief-system or lack thereof.

I had a dream of the very distant future (I have a feeling that at the least one lifetime comes before this) and I was in a Royal Family in England. My present-day grandmother, who died a few years ago, was there. I was never told or thought I have ever lived a Royal life. In fact, I would have to say the lives I “saw” were quite ordinary. In the Royal life, I simply saw a room and stairs but I “knew.” I was not wearing a crown. I had no jewels on. I was wearing a red skirt-suit. At first I was getting ready in front of a mirror. I had dark hair tied back. Then I was outside walking down some stairs with my family. A very simple scene.

It is ironic that while most of the world believes in reincarnation, it is a taboo in Western culture (“Belief in reincarnation is an ancient phenomenon. This doctrine is a central tenet within the majority of Indian religious traditions, such as Hinduism including Yoga, Vaishnavism, and Shaivism, Jainism, and Sikhism. The idea was also entertained by some Ancient Greek philosophers.”) As an academic, I wrestled with how this book would be interpreted by others in my field. I even had reservations about confessing my thoughts on reincarnation to certain members of my family.

In a manner, writing this book is like being “outed.” (”Although it might be hard to imagine right now, tell yourself that This too shall pass. Things might be hard for a while, but they will get better. People will come around, or they will not. You cannot control what other people’s reactions will be. All you can control is your own behavior and reactions.”) The repercussions or backlash could be substantial. To me, it is about integrity and discovery. I am willing to shoulder a burden of negativity.

When I would tell people that I was writing about reincarnation, I would get skeptical looks. Even though there was a curiosity and interest, there was a bigger doubt-factor. Although I am considered an intelligent person, the subject is way too whimsical for most. I have laid tarot cards for people and peering into the future seems more reasonable than reincarnation: So do things like horoscopes (“a chart drawn up through the art of astrology”) and numerology (“the study of the occult significance of numbers”). I am very curious about this hierarchy. There does seem to be some kind of priority, as if one were more reasonable depending on what they admit to. It says a lot about a person, one’s reaction.

I definitely see it more as about them than the subject matter.

AGAIN Chapter 9: Distance

I know I am deathless. No doubt I have died myself ten thousand times before.

Walt Whitman

In Quantum Physics a term exists called quantum entanglement. “Quantum entanglement is a quantum mechanical phenomenon in which the quantum states of two or more objects have to be described with reference to each other, even though the individual objects may be spatially separated.”[1] Distance and space are meaningless; each object always affects the other. I believe that we can affect each other no matter the distance, and I think that is why some connect with the “other side.”

What we perceive as “too far” is an illusion. One can find a reality that exists beyond the laws into which one buys. Quantum Physics proves this. I might have an extremely open-mind but if one needs back-up, well, there is loads. It is my belief that simply thinking about somebody creates a link to them, like a force-field.

There is a magnetic connection. I do not think we lose that when someone dies. Energy is transformed but a chord remains. We might miss them greatly but we can access their energy. I might miss my close friend James, my cat – Annie – who I loved for 18 years, my grandparents, etc., but I am convinced they exist in a different form.

I know that death is a touchy subject and if I did not have such a strong conviction, I would not associate myself with it. Things like “distance” and “death” can have different meanings than the ones we assign them. We can all have a very different relationship with these terms. Then again, if one views these terms as absolute and definitive, then by definition they cannot be variable and change. Terms, like some people, can be stuck in old, familiar habits. What is new or challenges old belief-systems can, and often is, met with resistance. Space has an illusory quality.

Yes, physical laws can create real distance in our reality. Physical laws obey a specific form and context. When one is told to think “outside the box” here, the possibility to use imagination to alter that context is very possible. To me, science fiction often articulates a different reality conceived in the realm of thought. We can go places of which we dream. I enjoy ideas of possible worlds and alternate realities.

Many of my dearest friends, like Darla and Nettie, live very far away from me. While I cannot hang out with them or see them at all, I feel no less connected to them. Our distance does not impede our mutual exchange of energy.

I do not use the phone yet because of my voice and speech impediment as a result of my brain surgery, but I nevertheless feel them. Communication without speaking can be challenging. It is absolutely possible to communicate without speech. In many respects we are used to the convenience of talking – look at the proliferation of cellular phones for example. I am very tempted to say that proximity is an illusion. Practicality inhibits me – we need to be at certain places at a given time. We need to make important phone calls. I think that our dependency on technologies can actually limit us.

Our potential to outdo things can be, to some, magical. I simply think that we block our possibilities. We opt for what is easy. An advertisement on television states that certain banking hours are easy and convenient. The insinuation is who would not want this? Popular wisdom holds that progress is convenience. It might be true, but our definition of progress = convenience needs to be examined. The easy route or road can be rewarding on many levels.

Some believe that my unconventionality makes life much harder for me. It does not. To buy into a standard format might be bliss to some, but I find my buzz elsewhere. I follow my own path, march to the beat of my own drum. Who I am or what I do might be confusing to many but I follow my integrity. I trust my judgments, my gut. Following the pack is not me.

My take on distance and space belies convention. Physical laws, which generally are believed to be true, can limit and constrain. A friend went on a yoga retreat and called it “restorative.” Sometimes we need to stretch ourselves to come back to ourselves.



[1] Wikipedia, “Quantum Entanglement – Wikipedia, The Free Encyclopedia,” http://en.wikipedia.org/wiki/Quantum_entanglement (accessed September 20, 2008).

Who Knew? Chapter 2

Stop and Smell the Roses

There is a point where in the mystery of existence contradictions meet; where movement is not all movement and stillness is not all stillness; where the idea and the form, the within and the without, are united; where infinite becomes finite, yet not.

Rabindranath Tagore

I always thought that nature was magnificent but I saw ducks in a pond and acted like I was six years old at a great birthday party. Warm wind was rustling leaves on a tree - I inhaled. A jazz band was playing in a park - I closed my eyes. It seems like the smallest things take on a new significance now. People find it strange when I say I feel blessed. I remember telling a neurologist that I feel blessed and she was shocked. I imagine some find my diminished physicality sorrowful and tragic. I had a coffee with a woman who I am sure feels I should be miserable and unproductive. Sorry to disappoint, I feel the opposite. While I know she does not want me to be unhappy, it would be expected. In addition to many things I feel blessed to be here. Ducks, wind and music feel magical to me. I do not take my existence for granted nor do I feel small things are insignificant. In lots of ways that which was beautiful to me is now heightened. I am unafraid of death but life can be very good. Even though I am utterly convinced I will be fine after life that does not take away from this reality.


I went to a small Rose Garden the other day. The colours were varied and quite fantastic. I inhaled. Imagine my surprise when I discovered there was no scent. So I simply stared at them. Even though the right eye I see out of bounces up and down like one is on a trampoline, they were magnificent to me. I have a thing for flowers.


One does not face a life-threatening situation and not change a bit. There are certain qualities about my personality that are foregrounded now. Aging might also be a huge factor. I am much mellower, less stressed, nicer and more productive. Certain qualities have been challenging like "patience" and slowing down. It is kind of ironic and somewhat discrepant, my mind is very quick but physically I must be slow to accomplish various simple tasks, like picking up or putting down a cup so I do not inadvertently spill the liquid inside because my hand shakes. If I think about it, I have to bring "being in the moment" to a very precise level.


I do not want to give the impression that my life is a bed of roses. If it seems that way, I do not let it get thorny. Many things bother me but I have discovered that my discomfort zone encompasses a very high threshold. I can bear a lot. I remember I had cats that completely destroyed my furniture with their claws. I did not get angry. I figured cats will be cats. I have always been this way.


I went out with a bunch of people and thought "holy cow, I must be strong." Certainly this thought was not precipitated by anything they did, it is just that I truly believe that most people who know me very well have a big problem with me. I often wonder, if Stephen Hawking looked different or if he spoke like most people, would his intelligence change? I do not fit into a stereotypical mold and I am sure that for many, many people I know that would be comforting. I am not invited to several things. This is hurtful and insulting but most of all it is so predictable. Do people imagine that if I thought I would be burdensome or if I knew the place was inaccessible, that I would participate? Is not getting an invite or explanation better?


I am ashamed to say the following because many people do not have enough to eat...my lack of an invitation for many group lunches or dinners deflates me. I do not think that most people I know say "we will not invite a disabled person." If my disabilities prevent access to a certain place and everybody goes there then a disabled person is left out. This is not about blame it is about complicity and responsibility.



There is collateral damage. I cannot access the stairs to where my nephews reside. I cannot visit them, and hence a relationship suffers. You do not have to be a genius to see the connection between disability and access here, eh?


There is a cliché involving a good-girl disabled person. I think I am very nice but the way I think is far from a cliché. Like many people there is disappointment, heartbreak and challenges in my life. In a very lucky way, I see my bigger picture. I am able to negotiate the negative well.


I was watching the film Groundhog Day for like the thousandth time and realized I might not like my condition but my choice is to do something with it. Every day it is the same thing because my physical changes are very slow. It is a long way from easy to be internally strong about this. I might not have "dark nights of the soul" but at times one wants to awake. What I realized when I watched the film was that my road, my path is to be very active without physicality. You know, I met a woman in my elevator who marvelled that she always bumps into me, "you could stay in your apartment," she said. An attendant was inspired by the fact I write books; "you could do nothing." I try to do what I can despite of my circumstances. In Groundhog Day, Rita says something to the effect that "it does not have to be a curse; it is how you look at it." My perspective does not regard this negatively. For me, my condition is an opportunity to live a new kind of life. Most people do not understand this.


I am not living with pain, I do not have cancer, I do not have a debilitating terminal disease - I may not have the same body as you, but I am LUCKY.

There are two sides to a coin. If I only focused on what I cannot do I would be doomed because there is so much stuff I cannot do now. I choose to focus on what I can do. Many able-bodied persons feel they should appreciate their status. Good, but if something does happen it does not have to be the end of the world. People have an idea of being trapped. As I have heard, we are our own jail-keepers. Even a prisoner can be free in the mind.


There is so much bullshit in my life and I know that most people can relate to this. Life can feel harsh, cruel and unfair. At times I want to throw in the towel for sure. I often wonder at a lack of awareness and sensitivity. Most of my anger comes from other people - not my disabilities. There are attitudes in my life I consider very negative, hypocritical and ultimately destructive. Maybe my expectations are too high and I have to release these because everyone is entitled to their lessons. Bummer though. I think of what people said after the horrific events of 9-11. "We cannot let the terrorists win by being miserable or giving up." My resilience is a personal weapon. In the face of everything I do not give up, and if I feel miserable it does not last long. Some people do drugs or drink to deaden what they are feeling but I am sure that does not last and who would want to be a slave to addiction if they could avoid it?


I was going for a pedicure and thought "la plus ca change..." My physicality may have changed but I am still me. I obviously internalized several ideas about beauty - now a pedicure is about what I like. I got a gorgeous plum shade (Siberian Nights by Opi) that I never had before. I was wearing sandals and later admired my toes in a café. My attendant laughed. 

Corey Tut

On April 6, 2010 at Lipstik Indie http://www.lipstikindie.com/


All women do have a different sense of sexuality, or sense of fun, or sense of like what's sexy or cool or tough.

- Angelina Jolie


I was wondering whether or not to write about New York City-based singer, guitarist, and songwriter Corey Tut (30ish). First of all, he is the most amazing eye-candy I have ever seen. Could I be objective enough? Did it matter if he could sing? I could just stare at his pictures. He is an uber-package though. He has looks, talent and drive. I have no doubt at all that he will be very successful.

Corey released "Aural Fix" in 2002, and an EP "Til Now" in 2004. "Everything" was released in 2008, and he is currently working on a new album, hopefully to be released later this year. His songs are often featured on the CW channel’s ‘Life Unexpected.’ He did a cover of Lady Gaga’s ‘Bad Romance’ that was a big hit on Youtube and was in The Hype Machine (The Hype Machine is the holy grail of music blogs. They compile the best and/or most blogged songs from around the world.) He wants “to make a big rock record that I could take on the road with songs that would allow me to put on a really dynamic show,” Tut says. “I love being on stage and throwing out different energies and really taking the crowd on a journey. One of these days I’m going to do my sensitive singer-songwriter, mellow acoustic record,” he says with a laugh, “but this is not the time.” He has also done several radio jingles for Toyota, Papa John's and Jiffy Lube among others.

I found out the following: He’s “very happily single. I'm married to my work right now.” His Favorite color is red or black, he’s a Sagittarius, his favorite movie is Happines. *Sigh. I think that I’m channeling Bridget Jones. “I'm gay, so a lot of the crowd at my shows are guys, but I do get quite a few women as well.” So, not surprising - even with all of that talent, he’s a hunk. Women (and gay men, of course) can and do, ogle freely. He enables a “female gaze” which is very rare and welcome. Even though idols enable a kind of adoration-frenzy, women’s desire in popular-culture fiction is usually punished. I like the combination of talent and looks in Corey Tut. For me, I get to experience lust and brain work. I’m such a third-wave Feminist! Or a big flirt. Can’t decide.

His influences include; Pink Floyd, Purple Rain-era Prince, Oasis, The Beatles, Pixies, Bill Withers, Jack White, U2, Dave Grohl, Sheryl Crow, Willie Nelson, Josh Homme, Radiohead, Yeah Yeah Yeahs, Patti Smith, Tom Petty, Pearl Jam, R.E.M, Ray Charles, Spoon, Johnny Cash.... “this list could go on forever.” He’s a DJ as well, “I DJ a couple nights a week. I started DJ'ing as a fluke, and before I knew it I was getting gig offers all over town. The pay is good and the hours are flexible. I can make my own schedule, so that allows me to really focus on my day job-my own music.” Me and DJ’s - OMG.

His favorite movie star is Angelina Jolie. He made a film with her, “I met her on the set of "Gia" in LA years ago before she was really famous and she was very cool. The only part of ME that made the movie was my bare ass in the Director's Cut. There is a scene where a close up of my ass cross fades to a close up of her face. A friend of mine took a picture of it and mailed it to me as a post card. It still hangs on my wall to this day,” Mmmm.

Corey loves performing Live; “There is nothing that can match that feeling of connecting with an audience in the moment with my words and music. Seeing people dance or move or sing along to something I am creating in that very moment is the greatest feeling in the world. For the most part, I have been doing acoustic shows over the past year or two and that has really brought out a new side in my writing and performing styles. It has definitely brought more nuance to my performance. I have a much more intimate connection to my lyrics and my audience when I am up there alone with my guitar. With a full band, it is has always been more about the overall sound and energy and getting the crowd going. I am looking forward to putting a full line up back together once this new record is completed, and balancing those two approaches.

Born in Champaign, Illinois, Corey Tut developed a craving for music growing up as a military brat in Fort Hood, Texas, and Rockford, Illinois. He started writing songs on his grandmother’s piano, which he taught himself to play. “Then 10 years ago I picked up a guitar and that totally changed everything.” Needing to broaden his horizons, Corey moved to New York City, kicking around the city’s rock and punk clubs like CBGB, Squeezebox!, and Coney Island High, soaking in the music and performing his own stuff. “You really have to find a balance here, but I have been here most of my life. I moved around a lot as a kid, and it was the first place I lived that ever felt like home, and I stayed. I've tried LA twice for work, but always came back to NYC.”

He goes on to say, “Then a few years ago, I went through a major upheaval. I had to shed a lot of darkness and start from scratch. That’s what everything is about. I just felt like I needed to get rid of the negative stuff that was around me. Writing the songs on the album was a very cathartic process.”

The New York Daily News says, “Tut draws from pop, rock, and punk influences to deliver a unique performance.” SoHo Journal states, “Finally something I can listen to has emerged from the abyss of pathetic, whining weirdo’s who inhabit the airwaves and all music television. This guy F’in rocks. Close the porn, log into iTunes and buy it NOW!” You don’t need to convince me.

Track List for “Everything”
• Someone Else’s Problem
• Right Where You Belong
• Everything
• Keeping Up With The Jones
• Wasted
• Way Back Home
• So What?
• Na Na
• Wayside
• My Favorite Memory
• Precious Time
• Not Leaving

If you wish to contact Corey Tut, feel free to email him at corey@coreytut.com.

Website: http://www.coreytut.com

Introduction to my book ‘You Never Know : A Memoir’

No Choice

Our deepest fear is not that we are inadequate…
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness, that most frightens us.
Marianne Williamson

Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense.
Buddha

What you are about to read happened to me. I try to make no excuses. I am a big believer in personal responsibility. Did I choose to get a brain tumour? No, I did not. But I did react to it. I am pretty sure it is an unconscious kind of thing.
They say I am a medical mystery or, some say, “miracle”; I was in a coma for five months. I did not speak from August 2003 until March 2004 – even when I came out of the coma. The term is “akinetic mutism.”
I really did not think of myself as a particularly happy person before the surgery. I am quite pleased with my response. On the whole, I was quite positive. I still am. I might get depressed in the future. If I do, I do. For now, I do not sit in dark corners, feel sorry for myself or take drugs. I laugh constantly. Maybe this is my disposition or constitution. Who knows? All I know is that I survived an ordeal of huge proportions, I am still surviving and, for many reasons, I am truly grateful.
This is not to say that physically I do not wish that I were back to the way I was. It would be so much easier on many levels.
It is very difficult for me to look in a mirror. In my mind’s eye, I look (and sound) as I did before and, to be perfectly honest, I prefer that to what is in the mirror these days. It may be superficial, but that’s how I feel. Of course, I can choose to see beauty on the inside, but it would seem I don’t. That would be rational and even logical, especially at this point. So, you see, I know how difficult “choice” is.
So many people say I am an inspiration to them. I am conflicted about this because I never set out to be an inspiration. I did not cut off my own limb to save myself like that guy Aron Ralston did. I am no Lance Armstrong, who continues to inspire everyone who knows about him. They obviously did not set out to be inspirational, but they are. And in my opinion, they are mega fantastic.
I watched Oprah and saw two disabled guys who inspired me. As a result, I had a good dinner with my sister-in-law’s dad, Bert, and his wife, Karen. They had not seen me since before the surgery. For me, watching this show was synchronistic. I made it personal, and it worked for me. I think awareness is key.
Anyhow, I have food in my belly and shelter over my head. For these reasons and more, I consider myself truly lucky. It is by no means easy, but at least I don’t have to worry about the basics. If this had to happen, I am in pretty fortunate circumstances. I always feel encouraged; there seem to be many possibilities for me. This is a definite bonus.
I was never scared or frightened. I am still more interested in my condition than anything else. The interesting part was that I had very little or no control with regard to what happened. I had to give up the idea of control. This can be very liberating. It seems like I am a “glass is half full” - type of person. In any case, I really believe most of this stuff is intuitive. Like I said, maybe it is just my nature, but I simply felt this in my gut. I made the phone calls I had to make and I let nature take its course. This is not to say I was ever fatalistic – I asked many questions about my surgery – but I could do nothing about the tumour inside my brain. I had two lawyers help me with a living will and a will. You never know.
Weirdly enough, I also made plans in case I went into a coma. I assumed some part of me would “hear” stuff and I made my mom promise to read to me from my favourite book at the time and to play my music. She did. I remember nothing of this.
I am told I laughed or rasped appropriately at the punch lines of certain jokes at a time when I was still in the coma. I wish I could remember the jokes and the laughter, but I do not. Then again, I have a picture of myself at four years old at a birthday party I do not remember, at a house I do not remember. Even in late January, when I was out of the coma, there was an event that I absolutely have no memory of. Someone whom I know quite well came to visit me. Apparently I was quite vivacious at the time and I recognized her. So, for me, memory has little to do with consciousness. I was certainly perceptive at all these times, but the jury is still out on the specific meaning.
It is difficult for me to use a pencil or pen, so, in a sense, this book is my journal. It really never felt cathartic though; it was not a release, maybe because I am still dealing with my new physical repercussions. My handwriting is incredibly problematic now and my letters look very childish. In the very beginning of rehab, I could barely write by hand at all, so even this is an improvement. I really enjoy the process of writing, so the book was more of a compulsion – something I had to do and wanted to do. Maybe this book justifies what I went through and what I am still going through. In many respects, it hardly matters to me as long as it is beneficial and not detrimental to me.
I typed out my entire book using one bent finger. This was much slower than I am used to, and while it was a challenge, it did not feel daunting to me. I could really think about what I wanted to say because I had more time. I would get physically tired during this process, so I would stop and take breaks. I would do it again. Believe it or not, I simply would not let my present physical difficulties get in the way. I know it would have been very understandable just to stop; however, that is so unlike me. Also, outside of all the therapy I am doing, writing was a distraction. While my subject matter was about what I have to deal with now, there was a certain “project” aspect to it. I like projects.
Although what I went through was quite unique, my story was never a subject for a book – although, of course, it has become one. I continue to live the story and I could guess the ending, but I would rather leave it unfinished. To be quite honest, I prefer stories that are open-ended. I know this bugs many people who would prefer closure, things neatly wrapped up, but what can I say? That part of my story is not written yet. In my case, it would be very satisfying to know the end. But I do not. I know what I would like to happen. Whether it does or does not, only time will tell. These are the cards I have been dealt – like them or not.
I am glad that I can write this book, but I am a writer (amongst other things) so writing about what happened is second nature to me. I guess what I want you to know is that writing continues to be pleasurable to me. Even if I am not tickled about my physicality at present, at the very least there is that.
I do not have a loving and knowledgeable partner in life to mediate on my behalf medically, but I do have parents and brothers with a vested interest in my health and welfare. I feel so lucky to have them. They were, and are, a great resource to me. When I was in the hospital, they were all quite extraordinary. Faced with an imminent challenge, they really stepped up to the plate.
At times, I get ticked off. I am only human, after all. I do not want to be anyone’s mission, yet I find I am often people’s lesson. On an esoteric level, this is amazing; but on a physical level, I really do not appreciate it. I am not a so-called guinea pig. Lessons are interesting notions. I feel we can learn things vis-à-vis other people or situations. If I get hurt, however, that’s a different story. I have little tolerance for these kinds of mistakes. It becomes my lesson and I may not choose to participate any longer. For me, the idea of “choice” is a liberty I have here. Options are very good. The thing about esoteric lessons is how we choose to react to them. Personally, I love to see how this plays out in others. Sometimes I get quite disappointed, but this is about expectation, which I try to avoid. Expectations are so difficult to deal with: They are a major challenge.
I was pretty ambivalent about getting my Ph.D. Now I am glad I have it. I like being called Doctor, even though I am not a Doctor of Medicine. I learned a lot and I know it speaks to my dedication, stamina and skills in addition to my intelligence. Maybe I need this degree because of the preconceptions that go along with disability. It seems to stun people when they find out. I am more than willing to see rationalization in this now. I am so glad that I have this in my pocket, whatever the reasons I might use now. The degree is not only an identity, it is part of my personal evolution.
I know that I have incentive enough to try to recover. Reminders, though well intentioned, feel insulting. And I do try, but I am also painfully aware of my physical limits at present. I believe I will overcome most of these in the future. Whatever disability remains, I will deal with. For me, there is no alternative; there is no choice. In addition to the earlier incidences, what you are about to read is where I am now.