Meditate and Eat Your Veggies
December 26, 2006 19:54
At 8:30 PM on Tuesday, December 5, 2006, while Becca and I were watching a movie, I had a grand mal seizure that was quite severe. Although these are common with CFIDS/REDD/ME, it has only happened once to me before, as far as I can tell. A really major grand mal seizure can kill you. Although this one didn't do that, it came damn close, and was in any event severe enough to precipitate ten more equally severe seizures-one after another after another. By the time they got me to the ER and stabilized-about 12 hours later-not only had I suffered around a dozen grand mal seizures in a row, I had essentially flat-lined three times and had the electric paddles applied to my chest three times-overall, a pretty gruesome ordeal.
Every one of the eight physicians (each specialists) who worked on me, told me afterwards that they honestly did not think I would pull through. The good news is that I got several nights of really terrific sleep-actually I didn't come to until three days later, in part because I was kept unconscious inasmuch as most patients panic if they awaken on all the life support systems I was hooked up to-no real polite way to say all this, but there was a tube up my ass, one in my penis, major catheters in the groin and carotid, and for three days was intubated (which means a breathing tube inserted past your larynx and into your lungs). My tongue was nearly bitten off in several places, and it was swollen to the extent it completely filled my mouth-basically it was the size of a tangerine, making intubation necessary for me to breath. I also had what's known as aspiration pneumonia (which means that during several of the seizures, I vomited into my lungs, where the stomach acid eats away the lung tissue, leaving it open to serious infection, which is what happened). Creatine levels, which they wanted under 5000 before I could leave, were over 150,000. This could be an indication of extremely serious and irreversible kidney damage, making dialysis a life-long necessity. It was pretty easy to see why the doctors didn't think I would make it.
During the three days and nights that I was unconscious, there actually was quite a bit of conscious activity going on in me-half of which was quite familiar, and half of which was just plain weird. On the one hand, there was ever-present Big Mind and an awareness of one's True Nature. On the other hand, I kept dreaming that I was in this really strange room of blue and pink pastels done up in a rather wretched aesthetic. I kept thinking, "This is a horrible dream-actually, with that color combination, it's more like a nightmare"-and then I would think that I have really got to wake up. Then I would shake my head really hard, open my eyes, and find myself in that same wretched room. I distinctly remember that happening at least three times. This wasn't happening to the frontal personality of Ken Wilber (who often wasn't present); it was simply happening as a modification of Big Mind. That's one of the wonderfully weird things about that part of the experience; instead of Big Mind dreaming an entire Kosmos, it was simply dreaming this wretched pastel room. Big Mind was awake as Big Mind, and I was fully aware of, or rather as, that. That wasn't what was bothering me. What was bothering me is why nondual awareness couldn't shake off this horrid little pastel display (it reminded me of the last words of Oscar Wilde. The last thing he is reputed to have said on his deathbed was, "Either me or those drapes have got to go.")
On the fourth (or technically, third and a half ) day, when Ken Wilber awoke, there was considerable confusion about this Ken Wilber character. Big Mind was still Big Mind, no problem; the external nightmare of the pastel room had been replaced with the "objective reality" (i.e., relative reality) of the actual pastel room-no problem there either, ugly as the room was. But I couldn't remember anything about this KW fellow. As a matter of fact, all short-term memory had been thoroughly scrambled. During the three-day period that I was "unconscious," I had at least one and possibly two experiences that were roughly similar to the near-death experience of light and tunnel (probably when they were using the electric paddles to stabilize my heartbeat). But even then it didn't involve any choice that a Ken Wilber was making. KW just wasn't there (the "choice" about whether to come back or not had to do with the destiny of the Integral Vision in today's world; and I had fully consented to come back and serve that Vision, but there was no "me," just ever-present nondual awareness. But even then I remember thinking this is the kind of dilemma or "choice" that regularly arises on a day-to-day basis, and so there was nothing especially new here). But it was after I had regained normal consciousness, sometime on the fourth day, that there was confusion for the first time, because this KW personality was starting to form, in addition to Big Mind and objective room.
The next several days were pretty intense, to put it mildly. First of all, it was pretty clear that my tongue was in a pretty bad way. For quite some time I thought it had literally been bitten off, and that I might never speak again, or that if so, it would require extensive reconstructive surgery. Even more concernful to me, however, was that several doctors had, no doubt trying to prepare me, began indicating that they were following my kidney function carefully, because the kidneys were about as sick as they could possibly be and this might indicate I would need dialysis for the rest of my life, a truly unpleasant prospect.
I'll have those who were there speak more directly to this issue, since they witnessed it, but, despite all of the true gruesomeness of the situation, I remember my distinct and first concern was the personnel who came into the room-making them feel at home, making them feel comfortable, making them feel happy, making them aware of their own True Nature to whatever extent possible. As I said, I'll have a few others address that in a moment, but I believe to a large extent this succeeded. Odd as it might sound, that hospital room became a place of true joy and happiness for pretty much everybody on the sixth floor of the Intensive Care Unit. (Of course, I had been trained by the best in this-Treya.) But that room lit up with laughter and light and so much care....
Still, this was without doubt the most horrific experience my life, and I commented frequently to friends that I honestly didn't see how people who didn't meditate could possibly endure something like this, let alone make it an occasion for levity and luminosity. And not just meditation. The doctors told me that the only reason I survived was that I was in such good physical shape at the beginning of the ordeal. When people started asking how I managed to get through something like this, I therefore started joking, "Meditate and eat your veggies."
In other words, get Integral.
Which is what a lot of the physicians and nurses started looking into during our stay. By the time I came to, pretty much everybody had googled me and were well into starting their education on Integral Medicine. I stayed in Intensive Care two more days and then was transferred to another floor for another two days, and much of that time was spent in wonderful discussions with the entire staff on what Integral meant, and especially on the necessity of Integral Medicine-which they all intuitively understood is necessary, but I don't think any of them really had a framework that actually worked-up until now, anyway. We brought books up for everybody, and I ended up signing probably 20 or more books all with variations on, "Thank you very much for helping to save my life...."
When I said "our" stay, it really was plural. As has happened in the past, Colin, Rollie, and Becca stayed with me 24 hours a day (or took shifts doing so). They made an absolutely hellish circumstance so much easier to tolerate. I still had tubes coming out of virtually every opening in my body (at least I didn't have to get up and go to the bathroom); was strapped down so as to not accidentally pull needles or catheters out; had major needles still in my neck and groin and catheters in penis and anus; and, at this point, had not been able to even sit up for four days. I still could feel no tongue at all (just a round ball, about the size of a tangerine, that filled my mouth); kidney functions were improving, but were still alarmingly high. Having these dear friends there around the clock was truly a godsend. During all that time, even with all the horrifying news, I don't think anyone ever saw me upset or angry or even irritated-but acts of kindness would just start me sobbing, and there was so much love and kindness shown by all of them it was so extraordinarily touching.
So, how am I doing now? Essentially, really well. Once I regained consciousness (i.e., gross-body consciousness), things seemed to improve quickly and dramatically. I am now over the aspiration pneumonia, and, most important of all, it looks like my kidneys have not suffered any serious permanent damage. This is really good news. I used to joke that the only major reason for having kids was for organ donors; since I don't have any kids, I really would have gotten stuck on four hours of dialysis several times a week, not to mention all the peripheral damage. The one lingering problem is that I have one hell of a lisp. I'm told that it will continue to significantly improve; the tongue is so highly vascular that it has a high degree of healing capacity. But for the next month or two, if you talk to me, you'll see what I mean by "one hell of a lisp." I was thinking about having a t-shirt made that said: "I Had Twelve Grand Mal Seizures and All I Have to Show for It is This Stupid Lisp."
(The first day that I had regained consciousness, and before I knew that I would regain any speech capacity at all, I knew that the staff at Integral Naked and I-I would of course be primarily concerned for my health as a friend, but that they also couldn't help but be worried sick that this might mean the end of Integral Naked, because I could no longer talk, and because Integral Naked is our primary source of income, the end of I-I as well. So I spent the better part of that day trying to think of some way to handle that situation and thus mitigate their worry as much as possible, and finally hit upon what seems to be a really terrific idea. I leaned over and whispered to Colin, "I figured out how to save Integral Naked-let the staff know." He lit up when I wrote the idea down, and agreed it would work. Basically, the idea-a version of which we still intend on doing while my mouth continues to heal-is that I will ask each of our Integral Naked guests to pick one of their best friends and interview them for IN, and then we would carry that-in a sense, a guest host and a guest guest. This could bring us over a year's worth of absolutely fascinating dialogues by and with some of the coolest people around. All of us still just love this idea-which happened under the oddest of circumstances, because I was still strapped down in bed on my back; I didn't have to get up to urinate or defecate because the catheters coming out of my body automatically handled that; I didn't have a tongue, but more what looks like a golf ball; and worst of all, I'm in this horrid little pastel room. Anyway, despite whatever fortitude with which I may have handled the thought of not being able to speak again, I can't tell you how relieved I am to slowly have speech returning. This stupid little lisp is the sweetest sound I've ever heard.)
The other thing you might notice when you first talk with me is that lots of short-term memories are still reassembling themselves. Sometimes even really obvious things-from a person's name to even who they might be-need to be mentioned, but once they are, everything falls back into place. So don't worry if we are talking and I ask you to remind me of several really obvious things; also, if there seems to be something important about a topic that I'm not reflecting, don't be shy in mentioning it.
What Caused the Seizures?
Initially, there was quite some confusion among authorities on exactly what caused this series of seizures. Several orthodox doctors believe it was caused by Neurontin, one of the prescription medications that I am on for CFIDS/REDD/ME. That never made sense to me, for several reasons: (1) I've been on this amount of Neurontin unchanged for several years; (2) the primary reasons Neurontin is prescribed is precisely because it's an anticonvulsant and reliably prevents seizures. Neurontin really isn't even a drug; it's a simple sugar, much like table sugar; and experts such as Teitelbaum recommend doses up to 6 grams. Although you can't rule out paradoxical affects of any med, this explanation never made much sense. I don't do street drugs, so it wasn't that (indeed, that was one of the first things the ER tested for). At one point it seemed somehow connected to a CPAP machine, but that didn't hold much water, either.
When the intensive care doctors asked me what I thought it was, the first thing I always said was that we can't rule out the most obvious: it comes with the territory of CFIDS/REDD/ME. In fact, the reason that this illness is often referred to as M.E. (Myalgic Encephalomyelitis) is that, as one of its leading authorities, Byron Hyde M.D., put it, "By definition, all M.E. patients will have some level of seizure activity as part of their illness." And as for types of seizure activity, a standard comprehensive guide to M.E. lists them as: "simple partial seizures, petite mal seizures, and grand mal seizures."
I had not had, to my knowledge, any major seizure activity up until this point, and so I had simply assumed I had lucked out on that symptom. However, it now appears almost certain that the incident around a year and a half ago where I broke my shoulder actually involved a grand mal seizure. We'd always assumed that I had gotten up in the middle of the night, pitch black, on a slippery wooden floor, and taken a dive. That probably happened, but it never made sense at the time that I couldn't remember the actual accident itself-incidences that painful are rarely forgotten (whereas with grand mal seizures there is usually total amnesia). Besides, my tongue was banged up quite badly and I had popped a crown, all symptomatic of possible seizure. Put that incident together with this recent one and there is little doubt in my mind about the cause. The good news in all of this is that, as deeply unpleasant as these last two weeks have been, at least I now know about it and am on dilantin, the top-of-the-line med for seizures. If this incident had happened any place other that a few blocks away from the finest ER in Colorado, I'd be dead. All in all, I consider myself one lucky boy.
A Few Other Perspectives
Ordinarily I wouldn't do this, it can be so self-serving, but so many have asked how things really went in the ICU, I asked the three folks staying with me to respond:
On December 8th I had posted a short blog explaining that Ken was in the Intensive Care Unit and to please send him all the love and healing energy you possibly could, through prayer, tonglen, or simple loving-kindness. Well, excellent job everyone, because 24 hours later Ken regained consciousness wondering what all the gosh-darn fuss was about. We decided not to blog publicly about this event until we had a better understanding of the situation, which, thank goodness, is much clearer today than it was then.
Towards the end of his stay at Chateau de Hospital, I was astounded to notice that Ken looked happier, healthier, and more rested than I'd ever seen him. He looked, I kid you not, twenty years younger. In fact, I don't think I've ever seen a more radiant, energetic, and wickedly funny hospital patient. I know the folks in the ICU had never seen anything like Ken before-the doctors weren't cheering Ken up, Ken was cheering the doctors up! Ken made sure that everyone who entered that room left happier than when they arrived, and many doctors and nurses told us, "It's patients like you that make this whole job worth it." One doctor even told us, "My career was at a point that it really needed something like this." It truly became a room of love, light, and levity....
Ken's surprisingly ubiquitous and inviting sense of humor has not only kept him alive and well during this otherwise bleak and unexpected hospital stay, but has also (and just as importantly) lit many fires in many others-fires that actualize immediate and visible bridge-building between heart and mind leading directly to experiential and causal communion among absolutely everyone with whom he came in contact, whether they were consciously aware of it or not. Ken often uses humor as transmission: levity = light = luminosity ("vast emptiness, nothing sacred"), and it was apparent constantly.
The doctors and nurses who visited him showed their happiness: one brought him home baked cinnamon rolls, many googled his work on the internet before their shifts with him, and still more were grateful to receive signed copies of their book of choice by the famous author. And they were aware that something extraordinary was going on. Ken's primary physician, who doesn't often gush, said, "Well, we think they're going to name a species after you...."
I am so very grateful for how adeptly his unyielding humor, good spirits and open warm-heartedness have bloomed and left their mark in this quick healing. Now his full efforts have returned to sharing with YOU and for YOU, his integral life vision. THANK YOU DEARLY FOR YOUR LOVE AND PRAYERS. You are all forever in ours. Yours, Rebecca Maria Carlson
I'm humbled by the honors bestowed upon me in the past couple of years: to meet, work with, and study with a man who writes as none other. And through the past couple of weeks, I've had perhaps the greatest honor of all: that of sitting with Ken Wilber, keeping vigil as he fought for his life in Intensive Care, and walked steadily and surely back toward health.
All of us were speechless after my Blackberry rang with news of Ken's hospitalization. Five of us from Integral Institute had just begun our "Date with Destiny" in Palm Springs at Ken's good friend Tony Robbins' invitation. After consulting with one another, it became apparent that none of us had the heart to stay, given the news from home. Even as Tony began to address the crowd, we spoke with his wife Sage, who conveyed the concern that they shared for Ken. She assured us of her prayers, and we began the journey back to Denver. The journey was spent partly in silence, and partly in some of the most extraordinary conversations I have ever partaken in. Each of us echoed what was soon apparent as a worldwide phenomenon: the hope and the faith that Ken Wilber had not yet spoken his last word. Prayers and good wishes poured in from every corner of the globe, so much so that it began to look like Ken would eclipse even Barbaro the race horse as the sentient being for whom the most candles were lit on Br. David's website, Gratefulness.org.
Nomali met me at the airport and we drove straight to the hospital, hurrying toward the ICU. There we met Colin, Roger Walsh, and Stuart, Marci and Ara Davis. We shared some quiet moments with them, then walked into Ken's room. I don't know that I had ever seen him with such quiet strength. We sat with him for a time and I uttered the words closest to my heart, somehow knowing that they would be heard and received.
Ken's progress defied all expectations. His vital signs quickly approached normal levels, and within a day or so he came back to consciousness. I have never seen someone quite so glad to see me as Ken was that day. And in that moment I knew him to be something beyond my boss; something beyond my teacher. I knew him to be deeply my friend.
Soon, it seemed to me, the ICU became an altogether and uncharacteristically festive place. Ken was having a grand old time with the doctors and nurses, signing books and discussing his work. More than a few of them Googled him on their breaks, and came to know that the patient in Room 600 was not a typical one.
To me, the surest sign that Ken was doing well was a phone message I received one night just prior to driving to the hospital. It was Ken, saying he looked forward to seeing me, and wondering if I might stop by McDonald's and "pick up 3 or 4 cheeseburgers, a Big Mac, large fries and a chocolate shake." In that moment, I knew that all was well (especially since he normally doesn't eat like that!).
I sat with Ken during the night shifts. It was an incredibly powerful time, as I sat in prayer with him and over him, and health returned, quickly, quietly. As is his habit, he rose early in the morning hours, and we talked, laughed, and shared more deeply than we ever had.
It was with great joy that he returned to the loft, which we affectionately began referring to as "the farm," home to two dogs and a brand new piglet. Ken was incredibly happy to see Bodhi and Kailin, and to meet LeeLoo for the first time. Things have slowly begun to get back to "normal," as normal as can be surfing the Integral Wave, with its exhilarating rushes and its occasional wipeouts! I treasure those moments in Room 600 and the knowledge they've imparted of the gift of life, ever precious, ever precarious. And I am grateful beyond words for another day in the life of Ken Wilber, and another day in my own life. May I use it well....
The medical team I had really was the finest ER team in Colorado, and they really did save my life. But, as orthodox physicians, they knew pretty much nothing about CFIDS/REDD/ME. I had to point out to each of them that the CDC (Centers for Disease Control in Atlanta) had finally conceded that not only is this a brutally real illness, it's approaching epidemic proportions. The CDC now estimates that at least one million Americans have this illness, although expert opinion puts it at at least double that. More people have it than have HIV, and quality of life studies indicate that the quality of life for those with active CFIDS is comparable to those undergoing chemotherapy. The parameters of this illness are actually fairly well understood. The exact trigger mechanism is not yet known, but it's mechanism of action is-it involves the damaging of the human body's production of the enzyme RNase. This defective enzyme then begins to dissolve the body's own RNA, and does so in literally every cell in the body, which is why so many different organ systems can end up involved. There is now even a test for this defective enzyme that is 95% accurate. All the other symptoms of this illness are caused by this central mechanism, which is why the only really accurate name for this illness is REDD (RNase Enzyme Deficiency Disease). "Chronic Fatigue Syndrome (CFS)" is almost a complete misnomer, first, because it's not really fatigue but paralysis that one experiences when there is a flare-up; and second, because that "fatigue" is the least of your worries in any event (it's definitely a problem, but quite far down on a list that includes everything from seizures to organ failure). For years now there has been a concerted effort to get the name changed, but so far the only alternative to CFS that one sees in this country is CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)-which is at least a slight improvement since the immune system is one of those systems hit hardest. In Britain it is referred to as M.E. (Myalgic Encephalomyelitis)-reflecting the neurological damage that is in fact quite similar to M.S. (Multiple Sclerosis). As "A Hummingbird's Guide to M.E." puts it: "In reality having M.E. is like having parts of Multiple Sclerosis, AIDS, Alzheimers, Arthritis and Epilepsy all mixed together at once, with some extra horrific symptoms thrown in that are entirely its own. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system-not a problem of ‘chronic fatigue.'"
For those of you who would like more information on this syndrome, the aforementioned Hummingbird's Guide is one of dozens of sources of information that have finally become available that are quite accurate and useful. The resources they recommend are also ones that I highly recommend. Also check out ImmuneSupport.com and my own discussion of this illness and how it has affected me can be found here (as well as "A Sudden Illness" by Laura Hillenbrand, author of Seabiscuit).
Karma and Illness
I've dealt extensively elsewhere with the concept of karma and illness-in Grace and Grit, for example, and more recently in Excerpt A of volume 2 of the Kosmos Trilogy. But it remains one of the most confused areas of understanding imaginable. I'm not going to get into it at any length here, but just let me make a few very brief points. Many people hear of situations like this, or perhaps suffer similar ones themselves, and imagine it must somehow be retribution for some horrendous crime in one's past. But keep in mind that karma doesn't mean that what happened earlier in this life is finally catching up with you; the orthodox doctrine of karma actually means something that happened to you in a previous life. According to the doctrine of karma, in this life you are reading a book that you wrote in a previous life. Many people draw the erroneous conclusion that because, e.g., they used to yell at their spouses, they now have throat cancer-but that's just not the way it works.
As a matter of fact, from at least one angle, the "bad things" that are happening to you now actually indicate a good fruition-it means your system is finally strong enough to digest the past karmic causes that led to your present rebirth. So if you were reborn-that is, if you are alive in a body right now-then you have already horrifically sinned, and unless you work it off in this lifetime, guess what? You're coming back. Illness itself does not cause more karma; your attitude towards illness, however, does. Therefore, if you are undergoing some extremely difficult circumstances right now, and you can meet those difficulties with equanimity, wisdom, and virtue, then you are doubly lucky-the causes that led to your being reborn now are starting to surface and burn off, and you're not generating any new karma while you burn them (as long as you meet them with equanimity and awareness).
I only mention this because all too often, people undergoing difficult circumstances of one variety or another add a type of New Age guilt or blame to an already difficult enough circumstance, and truly, that's not only inappropriate, it's inaccurate. If you would like to pursue some of these concepts in this more integral fashion, please check out Excerpt A. In the meantime, if you're undergoing some sort of truly difficult or even horrific circumstances, please don't kick yourself when you're down. That, indeed, would create bad karma. The good news is that you are finally ready and able to burn off the karma that led to this rebirth, and this is good news indeed-if you meet it with love and openness and a smile.
Next for Integral Institute
Aside from being set back a couple of months, Integral Institute is moving forward just fine. As a matter of fact, we are extraordinarily fortunate in that we escaped a proposed change in middle and upper management that would have spelled absolute disaster for I-I. We have completed our first round of looking for a new CEO, and are delighted with what we found.
(My only major regret is that we did lose one terrific person who was also our main financial contributor, and we are definitely hurting because of that. But we will simply put the word out and begin looking for some person or persons who can step in and help us out in a similar fashion as benefactor, in addition to the wonderful contributors that we still have and that are a central part of I-I's organization. If you know anybody, or you yourself would like to work directly and closely with us in this regard, you know my email address-or simply email us from the President's Circle page on the Integral Institute website. But we are beginning a serious search for patrons and benefactors, and would love to hear from you.)
In the meantime, the business aspects of things are going extraordinarily well. We have found our CEO candidate who will start with a two-month trial period-we are extremely happy with this person. (For those of you who applied for CEO, and have not yet heard from me, please forgive the delay, as I will personally be getting back to you. Also, because we might have found our CEO, there are also some other positions available that we would like you to consider-again I will be getting back to you on all of this.)
My own writing is continuing to go extraordinarily well. My first truly "popular" book, The Integral Vision, will be out this summer from Shambhala. Further, I'm about 90% done with what I think is one of the most important works I've written, Transformations of Consciousness (which is the original book of that title with some 400 new pages of material-exploring healthy and dysfunctional forms of both states of consciousness and structures of consciousness-and in what I believe is a landmark fashion). The Many Faces of Terrorism, as some of you know, has grown into a trilogy (three books at about 450 pages each), which we simply call the "terrorism trilogy" and which I'd say is about 70% done. We are, however, going to excerpt three of its main chapters that present a full-fledged theory of Integral Politics-and these will be included in the first two issues of The Integralist, Integral Institute's membership magazine (the first two chapters are also available on kenwilber.com right now, here and here, with the third yet to be posted), whose first issue is due out sometime this spring/summer. All in all, some really good stuff, I think, coming down the pipe.
A Little Help from My Friends....
I'd like to thank again Colin, Becca, and Rollie for staying with me (or taking turns) every minute, day and night, for the week that I was in the hospital, either in intensive care or telemetry. When you've been strapped into bed on your back, with tubes coming out of every orifice, and with no chance to even sit up, things like having some crushed ice to suck on can make all the difference in the world. These are always such clarifying moments and, paradoxical as it might seem, there was an astonishing amount of love and clarity and laughter and care coming out of that room all week long, it was obvious to everybody.
I also want to thank Dr. Roger Walsh for dropping everything he was doing and flying out from California. Roger is one of my two or three oldest and best friends and it meant a great deal to me. Dr. Mike von Gortler saved my life yet again, this time very literally, and reminded me how in debt I am to that incredibly decent human being. And thanks to Stu, Marci, Ara and Aja. But outside of these few folks, however, we tried to limit, at least at the beginning, the amount of information that went out, because many of my friends would want to come out immediately to see if they could help, and they would feel horrible if they didn't-and since there really was nothing that could be done, we didn't want people feeling bad about this. I still haven't really made contact myself yet with hardly anybody, and that will still take a few weeks to a month or so, so please bear with me (my body really got creamed and is moving pretty slowly). But I thank all of you for your prayers and well wishes, the flowers, the candles lit online, and other deeply appreciated gestures of care and love and concern. Rollie said literally thousands of responses came in from all over the world, and I will never forget it. I have no doubt that's why I pulled through this as quickly as I did.
Sending all my love and care and life and light,