Fear

Being sick is about being afraid. It is about functioning when you are afraid.


LITANY AGAINST FEAR
I must not fear.Fear is the mind-killer.Fear is the little-death that brings total obliteration.I will face my fear.I will permit it to pass over me and through me.And when it has gone past I will turn the inner eye to see its path.Where the fear has gone there will be nothing.Only I will remain. Bene Gesserit Litany Against Fear - From Frank Herbert's Dune Book Series© 1965 and 1984 Frank HerbertPublished by Putnam Pub GroupISBN: 0399128964

Fear is not, however, the mind killer. But this presupposes you know what a mind is. A mind is not your brain. I think we all assume that our mind is in our headbecausee our eyes are there. But your mind is not there. Your mind is anartificiall contruct, not to be confused with your intellect. Fear, feeds the mind, and obstructs the intellect, which acts. It is the mind which must be dissipated, released, discharged, for the intellect to function.

Take Scott Sonnen's work. It is interesting. I cannot find the article, butScottt talked about how 5th degree black belts, when terrified, which happened outside the familiarity of their training, could not recalltheirr fighting abilities and had the abilities of a novice. We have all been there, where terrified in performance anxiety, we lock up, and forget that over which we are masters. We see rookies freeze, speakers pause, writers block. Scott described a martial arts system that sought to take startle patterns as the platform for strikes and defense, but he argued that the better way, was to train in scary circumstances, while mainting a sense of levity, then youassociatee pressure as fun, and all of a sudden your mind works openly. I have seen video of his kids training. They move beautifully and do things I cannot think of doing. Most striking, they are smiling all the while. Even laughing. The fact is, instead ofperformancee anxiety, which corresponds to ability- in short, the better you are at something, the more you are affected by pressure, these kids had full, unbridled access totheirrabilitiess. Seriously, think Michael Jordan is the greatest basketball player everbecausee of his skills? Hardly.Itss that in pressure situations, his skill level does not diminish. That is the key.

WhenIi played goalie, I saw kids every day take turns in the goal with better raw physical tools, but in a gamesituationn, they crumbled. The career goalies had skills, but more importantly, they did not inhibit those skills with fear. Some call is arrogance, some call is star power, others call it make-up. Whatever.

Well, illness can lock you down. Scare you intohorriblee reactive patterns and paralyze you.

So, what do you do?

You do what anyone does who is paralyzed by fear. You confront and investigate the source of your fear. You do what you can about it, and you accept the rest. This holds true for test taking, aging, the darkness, and even Sz. Once you have accepted what is there, and the fear is gone, it is time to build back confidence in yourself and confidence in you living process.That'ss where I am now. I am not afraid, of course this has a lot to do with healing, but even when I was sick, I was brave enough to look it in the eye and not beafraidd often. But now I am tackling little challenges. Trying to build a solid foundation of small victories. Rebuild my confidence. This may sound silly, but it has been very important. There was a time when I was afraid to eat, afraid to be alone, afraid to be with someone else. I wasafraidd that I would never be well, that anyreprievee from illness would be my last. I became paralyzed.

Well, in healing there is a lot of confronting those fears. I find those startle patterns knit deeply into my life. It is taking time to extricate them, and to live with a sense of levity again. Sometimes I think I failed in my relation to the illness,becausee I never accepted that I would be sick my whole life. But one day, when I am grey, I will be faced again with thediminutionn of health, the steady, unavoidable decent into death, and what then? Will I have learned to laugh in the face of it all? Will I again lock down with terror? Idon'tt know, but I have learned at least that until you have to face it, you have to smile and laugh and play.

A Collection of Resources

I am endevouring to create a collection of useful, orthomolecular oriented, resources, perfect for any Schizophrenic in your life. A starting point for people.

Overview:

This is the champion best site I have found: http://www.nutritional-healing.com.au/content/condition.php?category=neuro&condition=Schizophrenia

Histapenia: (332 for histapenia)
http://www.digitalnaturopath.com/cond/C376401.html
this one is short, but a good reference. http://www.diagnose-me.com/cond/C376825.html

Histadelia: (773 for histadelia):

http://www.diagnose-me.com/cond/C447056.html

http://www.digitalnaturopath.com/cond/C446553.html

William Walsh's speeches: More available on the Pfeiffer HRI web site.

http://www.nutrition4health.org/NOHAnews/NNS91BiochemTreatment.htm

http://www.alternativementalhealth.com/articles/walshMP.htm

Histidine: This is not the best site, but I highly recommend you run a search on Histidine. It clues you in to why it might cause problems. http://www.cfsn.com/histidine.html

Thats a start for you all. Please, please please use the comments page to add anything else you found useful and why. There are a lot of great cites. regrettably, browser problems have erased all of my bookmarks. I want to create one place people can start.

Insomnia

Insomnia is a blight in my life.

Since I was 4 years old, I have sleep onset insomnia. I have studied it, kept journals, tried milk, bee's wax, music, lights, white noise, etc etc etc...but it has always been a problem.

Lately, I think under the vitamin regimine, it lifted. In the last 7 months or so, I have able to go to sleep most nights without much waiting. I lay for 10 or so minutes, and presto, I am asleep. Usually the routine is an hour or two and then out.

But recently, in the last month now two months, I have been having really wicked insomnia. Total insminia. All night long. Now, when I was younger, in high school, I had this. It seemed unconnected to stress, it just seemed like I lost the nack for falling asleep. The problems would linger for a month and then dissapear for a year or so.

I asked this pfeiffer center. They told me, rather uncommitally that it could be the folate. They did not recommend a program for reducing it, and I am not eager to since it has been one of the main keys to my recovery. But I need to sleep.

I try to put my finger on it. And yet up come up empty. That is a mixed metaphor. Still, in efforts to make this site more fun, more inviting, and a sxhizo-spectacular, I am making this one a poll for anyone who wants to write in. That right, cure My insomnia and win a pony. Options are:

1) too much protien:

This is a common problem. If I eat too much protein at dinner, relative to carbohydrate, I cannot sleep. I will give you a hint. I dont think this is it this time. It just feels different.

2) concentration:

Dopamine rewards focusing on new stimuli. Histapenics have too much domapine. My mind is racing racing racing when I try to sleep. I wonder if this is the problem since during the day my mind is unfocused, and when it is focused, I generally can sleep better.

3) B-6.

When I used to take too much, this one kept me up. Again, I am going ot go with a no, here, becuase I am not getting the nightmares and vvid dreams that came with too much B-6.

4) b-9, folate.

Well, it is supposed to rev your metabilism and maybe its just putting too much fire under the hood

5) work

I am a wee bit freaked out about work. Then again, I had totoal insomine in chicago before the Pfeiffere center when I was not working and just out with friends all day.

6) create your own.

There you go loyal readers. If you have an idea, just write in and the Pony could be yours.

Bulletproof?

Limb by limb and tooth by tooth
Tearing up inside of me
Every day every hour
I wish that I was bullet proof
-radiohead.

I always liked that song. When I was ill, it was somethign I would play often, although it took my emotions too far sometimes.

Still, I have stumbled on the fact that I might just be, kind of, bulletproof.

"THE RELATIONSHIP between schizophrenia and cancer morbidity and mortality has been a sort of epidemiological puzzle for decades. Several studies have reported conspicuous reductions in the occurrence of malignancies, in particular lung cancer, in schizophrenic patients. Authors have typically commented on the difficulty of explaining such findings considering the widespread tobacco addiction in this population. However, the majority of these earlier studies have been of small size, based on proportionate mortality statistics rather than on incidence, and generally lacking in methodological rigor. Baldwin1 estimated that at least 100 000 person-years of observation would be required to reliably identify any significant association, positive or negative, between schizophrenia and cancer. Among the few studies meeting this requirement, the World Health Organization (WHO) multicenter investigation, based on record linkages across case registers, found significant and consistent decreases in the incidence and mortality of cancer in nearly all sites (standardized incidence ratio, 0.38; 95% . . . [Full Text of this Article]"


Thats right kids, despite being at risk groups, Sz-ics have far lower concer rates than the general population. This is interesting. My Nana was diagnosed with Colon cancer. She never took treatment and was given 6 months to live. That was nearly 20 yeras before she did pass away. I wonder if there was some sor tof a-symptomatic Sz wandering in our gene pool. Noone in my family has ever, to my knowledge, faced cancer, except my nana who beat it without treatment.

So, we can put this in the silver lining column.

Further B-6 thoughts

Since I get so many questions on B-6, I thuoght that I would add to the site this interesting, and readable, article on B-6, its purpose, its effect, and what defficiency does.

http://www.foresight-preconception.org.uk/booklet_vitb6.htm

In addition, I read some anecdotal notes from physicians who recommend 1/4 to 1/10th as much p5p as B-6. In short, that p5p is absorbed much more completely as it does not need to be converted

Another pint

no, not drinking, loyal readers, but back ot chicago for more testing at the Pfeiffer center and yet another pint of Michael's blood collected, spun and tested.

First of all, I had a great weekend. I loved Chicago. Boston is a good town, maybe better by the fact that it is manageably smaller, but Chicago was a great time. I will not much belabour you with reminiscance, I try to keep the eyes of this blog firmly planted on my own receeding craziness, and the exoeriences that brought me back ot health, but I must say that never has a trip to the doctor been so much fun.

I did meet with fellow Journey-er C. We will call him C. He is a great young man with a great family behind him. We all met up in Millenium Park and had a catch up and picnic in a light mist. He has just begun with the Pfeiffer Center. I do not think, from talking with C, that he feels that he is at the point were he is strongly responding to the therapy, but his family seems to feel he has improved substantially. I looked at him and wondered if I was looking at myself 5 years ago. He seemed happier than I was then, but I have been told by good friends that noone could tell that I was in H*ll at that time.


From the Pfeiffer Center: First off all, I have a peeve here. The pfeiffer Center literally, really, saved my life, there is no denying that, but I flew 1500 miles and got to speak with a nurse practitioner. A Nurse. Ok, yes, I was late, but I was peeved. I let that last about 30 seconds while I decided if I was going ot be a pain in the *ss about it, but then decided, well, if they are giving me the greenie, we can put her through the paces. I asked her everything, and to her credit, she answered honestly what she could and gave me personal insight into her own recovery ( She was histapenic like me). There were answers that I still need, answers about screenign and childeren and inhertiability, but I might not get those answers ever. Yes, procreation might be a bit of a roulette for my poor son/daughter. I am sorry kiddo, in advance. I know there is a 15% chance that you will have this, and only an 85% chance that if you do you will recover, and I promise that I will think about this as carefully and selflessly as possible, but I might still not get the green or red light I want and have to make a decision. I hope it works out for you.

But I digress.

I asked if niacinamide was better than Niacin and why the flush is important. The PFC told me that they actuall yonly give niacin for people with liver troubled, and otherwise prefer niacinamide. The nurse practitioner could not tell me why that was.

I learned that a histapenics histamine levels will not usually rise with recovery, but a histadelic's will lower. Huh. How does one know when to stop then?

I learned that I take a lot of b-6. I had no idea. I take it in p5p active form, so that my liver needs not convert it, and the nurse said that she rememebred that 10mg of p5p was equal to 100 mg of B-6. That cannot be right, but I have read similar reports elsewhere.

I learned that the PFC missed diagnosing my pyroluria becuase the lab they used did not allow for the dilution of urine for people who drink a lot of water. now they take the specific gravity into account. That brought my last Kryptopyrolle reading out of the normal range, and increased my wellness considerably when treated.

THey did not seem to think that my food sensitivities and chemical sensitivities would ever dissapear, but that they would diminish. Well, thanks PFC. They already have. But I suspect they are wrong on this one. I am getting cocky about my recovery. And so be it, I think I deserve to be a little cocky after what I have been through.

Noone had any answers for why I get hypoglycemia in the middle of the day every day whether i eat or not, but they did caution me to stay away from fruit and encourged protein consumption. Not news to me, but maybe to you.

But now I wait. Wait for my blood to come back.

By the way, for anyone who is interested, and that probably includes me and noone else, my grandfathers brothers were named, Ludwig, Rikard, Yarlslav, Arnost, Edvard, and Jurgi. Thats is a great collection of names.

I'm so tired

Not right now. Actually, I am farily chipper, but I get so many people who are suffering from SZ and SZ like illnesses that I feel like I need to post something.

I used ot be so tired. No, not tired at all, exhausted. I didnt want to sleep, I wanted to be packed away in vaseline and left to sit still for a hundred years of rest. Emotions were too energy consuming. I slept, sure, but I never felt rested. I remember having to rest after flights of stairs, how my hands would shake after a simple run. how it took me days to recover form a strangth training session, no matter how mild. At my worst, I used to have to sit every few blocks. I could not cary a back pack very long and even a book or two in there felt like a lead weight.

There was lassitude.

lethargy: a state of comatose torpor (as found in sleeping sickness)
languor: a feeling of lack of interest or energy
inanition: weakness characterized by a lack of vitality or energy

There was the associated despondancy and depression.
This all made me feel terrible. I did not have the emotions to engage with people. I wasnted to be left alone. All the time I retracted from social interation. I stayed in. I said no. I could sit with my family, but not truly love them becuase interaction was so taxing. When they were gone I wept, or would have if I could have made the tears, becuase I was so alone. I wanted to reach out, to laugh and smile, but I could not.

Once, at my fathers house, I was so over come by enhuastion I lay on the ground in his living room, not moving. he came home and saw me there. He told me "get up". I said "I cant". I couldn't. I felt almost paralyzed. I think he thought I was lazy, not that day, but that summer. That day he was scared, becuase he could see I could not get up.

Even as I got well, I dreamed, fantasized about a house on a creek with books and sunshine where i never had to get up. I was scared if I stopped moving forward though, that I would never get well. So I put one foot infront of the other, all the way to law school ,and through it, and to graduation, and to a clerkship, and to work, and through a failed relationship. I just plodded along, adn looked to other people to know I should be having a good time, becuase I never felt it. I never felt anything.

Flat. I felt flat. Life went by and it was such a bother. This was the depressive side of the illness. I recall thinking of living another 60 years and I was terrified. I had no idea how I could make it. one day was so hard. I wanted to rest. To sleep. To wake up in a thousand years, fresh and ready to go. but I knew that rest was not the answer. it wasnt. I rested more and more and neve rimproved. I had to improve the energy systems.

There was a book by DOuglas adams, The Long Dark Tea Time of The SOul, in which the Norse gods are afflicted from a malaise. Odin sleeps eeveryday in a white linen bed, woken only once a day to have the bedding changed and fresh sheets brought in. That was my fantasy. Thats what it was like.

To the font

I am going to Chicago. This friday in fact. I am going there to the Pfeiffer center for a check up. They will draw blood. They will ask questions. They will talk to me and address concerns. In a few weeks I will get a sheet of paper that will tell me what my blood told them. It will tell me what I should take. I will go to the tinernet and research any new nutrients I have never heard of before. I will call with some questions. Then I will take the pills, adding one change at a time to monitor the result. Then I will move on with my life.

I look forward to this visit. Someone dear to me is coming with me. She wants to know what it is like, visiting this group of people who have helped to get me to wellness. She wants to ask questions of them. I want her to hear me interact with them. I want her there to tell them when she sees things I dont. I like that this part of my life is being lifted from the shadows into the light. I like that people are engaging it and accepting it as part of me.

Sometimes I feel silly getting on a plane for a doctor's appointment. I feel weird sending in the claim submission forms. I feel like I am desparate. But then I remember that I am well now, and once I was a mess, and that this is part of that journey.

I like the people at the Pfeiffere center. I recall my first visit. I was skeptical until my meeting with the intake nurse. She was the first medical care giver who had ever listened to my story without a look of pity and condenscation in her voice. She was sympathetic and she sounded like she had heard the story before. She had heard my story before, dozens of times. She anticipated my comments, and then somehow, being treated by a clinic who treats crazy people, I did not feel crazy anymore. I felt completely sane and normal. They treated me like I was normal, and they told me everything would be alright. And it is. Or it almost is.

I will not have time to write much until I get back, and then I will tell you all how it went. I will tell you how it was to meet a fellow wanderer on this path, which I also hope to do while I am there. Have dinner with he and his family. Tell them that they are taking the first steps, but that I am taking me last, and that it never happens fast enough, but that wellness happens. I want to bring this circle full close by seeing him and talking with him. I dont know what we will talk about, but one never knows what they will talk about with family, and I do feel like we have a familial bond in a way.

Well all, hope all is well with you.

Not nuts enough

Well, that does it. I was officially rejected for psychiatric help at the Freedom Trail Mentla Health Clinic. i was found to be not nuts enough for thier pity, charity, or help. I felt kind of sad really, all those years suffering in silence out of fear of having control over my treatment wrested from me from these very institutions, but now, having found recovery and wanting to talk about what to make of the experience I am turned away.

I see the homeless talking to themselves, bedraggled men with grey ropes of greasy hair bent over like oil pumps talking non-sense into thier beards. I see the men sleeping on the train, drollong nad waking ot shouting horrors. I see the woman stumbling in this hallway with cuts on her wrists and followed by the patronizingly calm voices of nurses and I know them for my family. I feel a kinship there, although thier worlds and thier holes are deeper than mine ever were. But there is a borhterhood, a compraderie in those of us who have known our bodies to be traitors at a young age. Breaking down in old age is expected, tolerated, even planned for, but youth? This was to be the trade off, healthy viverant twenties for a slow decline to the bed. And I see those people, with cnacer, with mental illness, paralyized, broken and spent, and I wonder if we related.

I still want to talk to someone. Like an obese person who has shed the walking coffin of fat slowly over the years, I am a little bit lost now that I am reaching my goal. Lost. Thats how it feels. I have all these dramas, and these rules, and these patterns, behaviors, cares, disciplines and now they are all becoming like baggage, heavy and redundant.

Of course there are still rough days. Yesterday was a rough day. A day where I am tired and dragging and it feels like sand is running in my viens. Sometimes the pain gets so bad that there is naseau and I float on top of it trying to distribute my weight. I did not sleep last night. my heart was banging like a timpani. I reluctantly saw the sun come up. It was not welcome, but the world keeps revolving.

I went to my little Zen group tonight. Boundless way Zen. I dont know what I am looking for there, but sometimes I find it anyway. There is a prayer we tell, which always takes my breath away:

I am of the nature to grow old
there is no escape from growing old
I am of the nature to have ill health,
there is no way to escape having ill health
I am of the nature to die,
There is no way to escape death
all that is dear to me and everyone I love
are of the nature to change
there is no way to escape being seperated from them
my deeds are my closest companions
I am the beneficiary of my own deeds
why deeds are the ground on which I stand.

Tonight we talked about taking responsibility for your mind. It is a subtle concept. Feelings, reactions, bitterness, regret, anger, dissapointment, we are not victims of these things. They are part of us. They are our reactions to circumstances. We can be alchemists, at our best, turning the hot coals of anger, anger even at being sick, into gold, or better yet, laughter. I dont do this every day, but I am sitting with it. I take solace in the fact that I was, for the most part, a good man while I was sick. While I feel that I have fallen short of my hope to do good acts in this world, and leave it better than I found it, I acknowledged adn respected that hurt inside without letting it become angry action. So there is that. A karmic null I should think. A push. but I am not done yet. I still have time to play.

Not nuts enough

Well, that does it. I was officially rejected for psychiatric help at the Freedom Trail Mentla Health Clinic. i was found to be not nuts enough for thier pity, charity, or help. I felt kind of sad really, all those years suffering in silence out of fear of having control over my treatment wrested from me from these very institutions, but now, having found recovery and wanting to talk about what to make of the experience I am turned away.

I see the homeless talking to themselves, bedraggled men with grey ropes of greasy hair bent over like oil pumps talking non-sense into thier beards. I see the men sleeping on the train, drollong nad waking ot shouting horrors. I see the woman stumbling in this hallway with cuts on her wrists and followed by the patronizingly calm voices of nurses and I know them for my family. I feel a kinship there, although thier worlds and thier holes are deeper than mine ever were. But there is a borhterhood, a compraderie in those of us who have known our bodies to be traitors at a young age. Breaking down in old age is expected, tolerated, even planned for, but youth? This was to be the trade off, healthy viverant twenties for a slow decline to the bed. And I see those people, with cnacer, with mental illness, paralyized, broken and spent, and I wonder if we related.

I still want to talk to someone. Like an obese person who has shed the walking coffin of fat slowly over the years, I am a little bit lost now that I am reaching my goal. Lost. Thats how it feels. I have all these dramas, and these rules, and these patterns, behaviors, cares, disciplines and now they are all becoming like baggage, heavy and redundant.

Of course there are still rough days. Yesterday was a rough day. A day where I am tired and dragging and it feels like sand is running in my viens. Sometimes the pain gets so bad that there is naseau and I float on top of it trying to distribute my weight. I did not sleep last night. my heart was banging like a timpani. I reluctantly saw the sun come up. It was not welcome, but the world keeps revolving.

I went to my little Zen group tonight. Boundless way Zen. I dont know what I am looking for there, but sometimes I find it anyway. There is a prayer we tell, which always takes my breath away:

I am of the nature to grow old
there is no escape from growing old
I am of the nature to have ill health,
there is no way to escape having ill health
I am of the nature to die,
There is no way to escape death
all that is dear to me and everyone I love
are of the nature to change
there is no way to escape being seperated from them
my deeds are my closest companions
I am the beneficiary of my own deeds
why deeds are the ground on which I stand.

Tonight we talked about taking responsibility for your mind. It is a subtle concept. Feelings, reactions, bitterness, regret, anger, dissapointment, we are not victims of these things. They are part of us. They are our reactions to circumstances. We can be alchemists, at our best, turning the hot coals of anger, anger even at being sick, into gold, or better yet, laughter. I dont do this every day, but I am sitting with it. I take solace in the fact that I was, for the most part, a good man while I was sick. While I feel that I have fallen short of my hope to do good acts in this world, and leave it better than I found it, I acknowledged adn respected that hurt inside without letting it become angry action. So there is that. A karmic null I should think. A push. but I am not done yet. I still have time to play.

crazy days

Last monday was a weird one.

I have noticed, and others recovering under an orthomolecular approach have noticed, that on the path to health, the very hallmark sof illness tend to flip and go the oposite way occasionally.

I was never with energy, my libido was like a slug (though for all I know this is disparaging to slugs), I was melancholy, and my mind raced along without me. On monday it was quite eh opposite. Not a mania, but a rage, deep inside me, welling up and spilling over. I wanted to hit, to be hit, to lift to crush, to be trampled. SOmeone asked me what they coudl do. the only thing I could think of was to have her stand on my back (which I kept to myself). I wasnted to be crushed under foot. I obsessed on one thing, and could not let it go. I needed out out out, and i felt suffocated by the city. My heart raced. My skin was hot. I did not sleep at all that night. I lay in bed and I never even drifted off. I felt a fear, nameless and invisible, coiling around me.

In comparing notes with a person recovering from this...we will call her X, X said this is the way she always felt until she started to recover. It is like being 17 again. Too much energy to know what to do with. She also had the need to have someone huge and heavy lay down on top of her and crush out the energy. It is too much.

It seemed to fade during the week, and it is nice just to see the other side of the coin for a while. markers of health, but rest assured dear reader, that this is anything but a straghtforward journey.

W.

Back to the bone doc

I just crawled into the office. I took the morning off the see the osteopath I wrote about last week. I think I am doing good work there. god knows that it did not resolves the Sz, but it is helping untie the knots that the tension from the illness created.

I like the man. He is kind and a healer. He is not focused on profit, as evidenced by the fact that he is constantly recommending other practicioners if thier mode of healing will help, and he gets decent results. I like doctors in general, but I appraicate that outside of the insurance company driven madness, the time and attention it takes to hear a patient, which is infintely more time consuming than reading labs. But Doctors should not treat lab reports. They should treat people. They need to develop instincts. I find hosital/allopathic care so resoundingly numb. If a test does not say it, they cannot hear it. Nor are they willing to believe it.

So I have had my sterum released, and my sacram has been, er, what was it, opened up. I know longer have a "hard head"./ I learned that my left leg is 5 mm shorter than my right, which is really nothing. I dont think I will take an orthotic for something that small. but I do need to work on a repeatable gate. If you dont know what I am talking about, nor do I. Except I feel like I do.

Welcome

No time to write more really. I have been at this trnafer all day. I dont know if you are keeping up with this, or if you are new to this, but in any case, welcome.

To catch up those loyal readers who have crossed voer to the new site, I was rejected for psychological services today. it appears that noone has any interest in a recovered schizo. Weird isnt it. A year ago, I was concerned I would be commited, now they will not even hear me out.

I am going again to the Osteo tommorrow. In other news, I think the B-6 is making me sleep less. Whether I need less sleep, or I am simply having vivid dreams, I cannot tell. I will have to monitor that.

Anyway, not much of a post, but there is not much time today. Patents to read, germans to sue, you know the drill.

Last Transfer

Subject: Same bat time Posted Date: Thursday, June 01, 2006 - 2:11 AM

Different Bat channel

Myspace, nice as they have been to host this blog, only keeps a handful of posts active, and I have had many requests to see the back posts, so I have opened a blog at Blogger, whihc I am sure I will regret.

You can find the back posts and future posts there at:

http://experimentofone.blogspot.com/

Thanks to all the hundreds who have visited this blog here. I hope you continue to check it out at the blogspot page.

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Subject: Quakery and Health Posted Date: Tuesday, May 30, 2006 - 2:59 AM

So, dear readers, I have returned from the Osteopath. Actually, I suppose the salient feature of his training his cranial sacral therapy. Skull bone manipulation for those of you who are furtune enough to enjoy health so pure that you have not wondered.

His office was plain, and informal, and he wore a hawaian print shirt. Long ago I ceased to asocaite white lab coats with the healing arts, but rather relegate to them only my assocations with the medical industry. No more, no less. The good doctor had a full row of catci craning from his window sill up toward the sun. There was probably a time when I would have thought that the presence of a living thing in a doctor's office was anathema to the necessary sterility in which healing is to take place, but I have been born anew, and quite honestly, I dont think I could trust a doctor who did nt demonstrate the simple ability to keep a growing thing living. Anyperson who fails to appreciate the beauty of growing a plant is unlikley to understand life really at all.

I have said it before, holistic doctors outside the allopathic paradigm may not always get the cuase right, but my word, they find the problem every time. An allopath might waste days mucking about with your head in reply to concern about headaches, but a holist will find if it begins in your hips or feet. This doctor was no different. Seamlessly he found the troubled areas without error. Whether he could do something was another story. He did, however, move things around, a bit like a rolfer, but more gentle.

There were no prescriptions. There were no promises. But there was noone in the waiiting room pressuring him to move on either, and I think the experience was a good one. He felt, chakras I think, or energy meridians. he diagnosed it a "triumph of the will". This is a medical term. He said it felt as if I had my energy blocked, but that I had been dragging myself forward anyway. Quite accurate really. He looked for the source and told me that it was backward. That too comports with past experience. He moved bones, he moved muscles, he applied EMT, and he sent me for X-rays because my hips are out of alignment. That was no supprise. I have crap hips. Born with em. He, in one afternoon, figured out what it took an alopath 4 x-rays, and an MRI to figure out...my right leg is shorter than my left. But instead of telling me that, and moving on, he is measuring how much shorter and will fit me with a lift for my show. I wonder if I can get a flip flop version too.

He moved things around, and I do feel better. Some of the energy returned has been a little, overhelming, and I need to find somewhere for it to go.

I wil go back next week, and I will let you know. He is a good guy really, and I am not holding out hopes for miracles, and I have to admit, that I dont even want toknow what the 7, 14, 12, annd 14s he was muttering ment, but I believe in healers, in white coats and in hawian shirts.

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Subject: Adventures in medicine Posted Date: Wednesday, May 17, 2006 - 3:47 AM

Just when you think you have tried it all, along comes cranial/sacral osteopathy. Actually, it is long standing and well known, but new for me. The idea that the bones in your skull may be formed in such a manner as to produce psychiatric symptoms takes a leap of faith for anyone born under the western crisis oriented philisophy. Louis pasteur, for example, would likley roll over in his grave, althout his buddy Beauchomps would likley giggle and kick Louis hard in the groin. But I digress.

I am not too familiar with the process. Often time cranial oasteopaths lay their hands on and manipulate the bones in, the skull, hoping to improve the energy flow associated with the cerebospinal fluid. I am going to let this happen. it is supposedly, very helpful for some schizophrenics, and, as you sports fans recall, I am much more interested in healing than maintianing preconceptions.

quoth wikipedia:

Craniosacral therapy, cranial osteopathy or cranial therapy is a method of alternative medicine purportedly used to assess and enhance the functioning of the craniosacral system, which consists of the membranes and cerebrospinal fluid of the central nervous system. Proponents claim that measurements of craniosacral motion are indicative of breath/heart rate, and that by lightly pressing on the cranial sutures of the skull they can remove restrictions in the flow of cerebrospinal fluid, relieving stress, decreasing pain, and enhancing overall health^[1][2][3].

we will see, we will see my friends.

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Subject: B-6 Posted Date: Tuesday, May 23, 2006 - 1:05 AM

no, this is not interesting. yes, it might be a bit freakish. This is my life. These are things I think about. I think about b-6.

B-6 is part of my supplment regimine.

The three major forms of vitamin B₆ are pyridoxine, pyridoxal, and pyridoxamine, which, in the liver, are converted to pyridoxal 5'-phosphate (PLP) - a cofactor in many reactions of amino acid metabolism. PLP also is necessary for the enzymatic reaction governing the release of glucose from glycogen.

Pyroluria is one potential cause of vitamin B₆ deficiency. In women, another potential cause for vitamin B-6 deficiency is use of oral contraceptives [OCs] and other medications containing estro-progestational hormones (such as those prescribed as part of Hormone Replacement Therapy [HRT]). Other contraceptive medications that may cause vitamin B-6 deficiency include: the patch (Ortho Evra), vaginal ring (Nuvaring), hormonal IUD (Mirena) and shot (Depo Provera). Specifically, habitual use of estro-progestational hormones inhibit absorption of vitamin B-6 (due to a disturbance of tryptophan metabolism), necessitating a larger daily doseage of B-6 into the bloodstream. Signs of a Vitamin B-6 deficiency include: depression, anxiety, loss of libido, insomnia, water retention, inability to process glucose (weight loss/gain). Physicians are now beginning to recommend routine vitamin B-6 administation during hormonal contraception/medication.

This vitamin may increase dream vividness or the ability to recall dreams^. It is thought that this effect may be due to the role this vitamin plays in the conversion of tryptophan to serotonin

Vitamin B6 has been used in combination with niacin in the orthomolecular approach to schizophrenia. Pioneers of orthomolecular medicine reported benefits from this combination.

The condition that is trated by b-6 is pyroluria...

Pyroluria (originally known as malvaria) is a genetic condition resulting in an abnormality in hemoglobin synthesis. People with pyroluria produce excess amounts of a byproduct from hemoglobin synthesis, called OHHPL (hydroxyhemoppyrrolin-2-one). In these people an excess amount of pyrrole is found in the urine. The most accurate test for pyroluria directly measures urinary pyrrole's.

Pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the urine in excess. (Carl Pfeiffer PhD, MD, 1983).

This abnormality leads to a higher excretion of vitamin B6 (pyridoxine) and zinc in the urine, with deficiencies (or borderline deficiencies) common. Changes in fatty acid metabolism often lead to low levels of arachidonic acid (an omega-6 fatty acid). The presence of pyroluria can have a profound effect on mental and physical health and was first discovered in relation to schizophrenia.

Typically pyrolurics are pale, with stretch marks on thier skin, aching joins, dominant fears, decreased social interactions, look young, etc...

I tested very slightly positive for this in my lab work. It was not thought to be a major problem, but that it might be contributing to my illness. I started to supplment wtih B-6. I started at 50 mg a day. Any more than this and my dreams got very vivid. For this reason, I was slow to increase the amount to the 150mg that the doctor wanted. A year or so later, I learned that I could increase the dose gradually and not have the incredibly vivid dreams. I did that and I felt a signifigant improvement in my health correlating with the increase. This might be coincidence. Still, the other day I decided that after a year on 200 mg a day, I would try 250. I have been at 225 for the last week, and I feel better still.

Why do I metnion this? becuase still with the best orthomolecular clinic in teh country examining me, there is the necesity for personal experimentation. I wish this were not do. I wish that one went to the doctor, got directions, maybe pills, or excersizes and then did them and got well. but doctors are not gods. They are kids like me who were better at math and science than english. They went into medicine instead. Its a good career. Sometimes you need to work with them, becuase noone can defien "feeling well" but you. Sometimes you need to do your own exploration.

I am exploring, and this is a fine line to walk. At a certain point, you see fear and death in every corner. Every picked up teh DSM-IV? After a good read, there is no sane person who cannot see themselves in many psychological conditions. Of course, the irony is taht I AM nuts, but I digress. Over the years I have been convinced, in looking for the culprit, that I had MS, Crohns, diabetes, wilson's disease, hematomachrosis, unresolved family issues, low self esteem, mania, food allergies, lipid metabolism disorders, intolerance of salt, etc etc etc. This is what you get when you look. But I had to look. I had to learn to investigate likley candidates and to take tests that could help me cross things off a list. I had to learn to trust the professionals, and to set out experiments that would result in clean results that were reliable.

This is a test. This is a test of one. it seems to be going fine, becuase I have been feeling very well. But this is my life, a constant state of trust and suspicion. It led me to recovery, so I will not abandon it, and over the years I have learned to modify it.

Glad you all could be a part of it.

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Subject: A new hello Posted Date: Wednesday, May 24, 2006 - 2:18 AM

things lately have been hectic, so I have ben remiss in my intention to tell you all about a young man who I have learned about who recently, but suddenly, began to exhibit the same symtoms I have had. he is young, and I think he sounds angry to have been afflicted. He is, like me, highly functional, which is a blessing and a curse. The suicide rates for the highly functional, as well as the hebephrenia type schizophrenics are almost double. They seem to both reatin insight into their illness, and the capacity for dispair. In short, unlike our paranoid and catatonic bretheren, we know just how sick we are and we are not happy about it one bit.

He is a bright kid, according to his mother, and having corresponded with her, if he shares his mother's intellect, then she is not inaccurate. I think the two of them are asking the right questions. he is looking for answers becuase accepting the realities of the condition are not an option. He sounds like he is on the right path.

Well, if you are reading this, dear northern sufferer, then I want you to know my path the health was a long haul. It was demeaning, it was frustrating, and it was wasteful. But there was no other option but to recover. If I could do something to make it all go away in one feel swoop, I would have, I would now, but that option never presented itself. What happened is that I had to take responsibility for the recovery. I had to abandon hope and plug away because there was nothing else for me. In the end there was an answer for me, amidst nightmarish adjectives like permemant, disabeling, improvement, slight, limited, imparired, and shattered. You seem to have a leg up. You have a good support network and have already found the resources it took me years to locate. I think you will recover, based on my experiences and the prognosis' I have read. Have patience, and when you run out of patience have faith, and when you run out of patience, have stubborn bull headed certainty that you will get well.

This recovery may not be what you expected, but you dont have a choice that I know of. You will have to define wellness for yourself and know, not just suspect, that that wellness is possible. Good luck.

Transfer #22

Subject: was that help? Posted Date: Monday, May 15, 2006 - 4:12 AM

My pcp recommended for me a pscychologist. Well, the guy works in a mentla health clinic, so in order to meet with him, I was assigned a case worker. A social worker. Great. Thanks. So I spent an hour today, in a building manned with security officers and patients wandering the halls talking to themselves, talking with a case worker about what I wanted from them.

Huge waste of time. Oh wait, not a complete waste. I was, of course, free of charge freaked out by seeing face to face, my fellow schizos. People, this is where they keep the padded rooms. Noone of the intake forms were set up for the patient themselves to sign, because, I guess, that is rare. It was depressing, and now I need to wait two weeks to discover if I will even be accepted for treatment. Not encouraging.

Meanwhile, I could serously use someone to talk to. I feel like this work this is a hanging on by the fingernails moment. Can I have a redo? Send me back to 98 and I can try it again, this time without mental illness?

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Subject: An investment in youth Posted Date: Sunday, May 14, 2006 - 10:46 AM

I just talked with my father this evening. He said something that made me think. I told him about my decision to extend a trip in CA last week that cost good money to alter the ticket, and he said: "you know, Bud Thomas was the first person I ever heard talk about it in these terms, but he used to talk about an making investments in your youth. "

Dad went on to remind me that I have a lot of youth left, but not an unlimited amount, and that one must make investments in being young, lest they grow old before thier time.

Its true, you know, everyone is saving for retirement, but who do you know that puts money aside for youth?

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Subject: treading water. Posted Date: Thursday, May 04, 2006 - 6:19 AM

wow. I just lost a lot of data. THis myspace blog really stinks.

I will give you the quick and dirty.

Recently I have seen my peers step up. It is that time in thier lives where they have experimented, focused, experimented and then re-focued thieir efforts. I cannot tell you how I admire the lives of the people who surround me lately. They are concerned constantly with the impact of their work. They think and re-think how they will improve the world around them, the impression they will leave. And many of them have changed lives.

The worst thing about my position is that I feel like I have been but treading water, just playing defensively while waiting to heal. Sure, it is neccesary, but it makes me feel less a man. less a human. For a decade while others have been slugging it out, putting thier time and effort on the line, I have been protecting myself. I feel cowardly. I really want to be like these amazing people who are dedicated to a bigger cuase. But I have been on the side lines for a decade.

Sure, I can make that time up, and I may have a golden resume, but I feel flat footed and inexperienced and my courage comes from recklessness instead of confidence.

Wherever you all are out there, you really inspire me. I hope you do not think less of me for taking care of myself for the last 9 years. I hope you know that in those last 10 years when you were making peanuts, and crying from exhaustion and frustration, and working yourself to exhaustion on projects that you believed in, you were doing something beautiful.

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Subject: How does it travel? Posted Date: Tuesday, May 09, 2006 - 10:23 PM

How does being crazy travel [I know I know I am not crazy, but darn it its convenient to say so and fun sometimes. Even Scizos have to have fun]?

I went to CA last week. In may ways I was looking forward to it, in may ways I was dreading it. You see, when I go back to CA I can tell how far I have have fallen. I left the bay area in 1998 and have not returned except to visit since. It still feels like home, which is precisely why I have not returned. Being sick makes you want to hide, to go underground adn lick wounds. I was heartbroken to be with my friends and not be with them becuase of perceptive difficulties. It was so hard. I was in a relationship when I left, all those years ago, and one of the reasons I did not go home to her was that I was ashamed to be mentally ill.

Years have passed and I have grown healed and changed, but still home is a yard stick that kicks the legs out from under optimism. I was nervous to return to the BAy. I did not stay with my mom, but did something I could not have done even a few months ago---stay with others for a protracted time. I used to get so wiped out by that, that I would have to recover for weeks, and I was assured of feeling loopy the whole time.

THis time I stayed with good friends, some of my best friends , and it worked. I had rough days, such as saterday, which I had to get through while really hurting, but I still got a lot out of that day. The otehr days were better, and I had mainly very clear moments. most of all, i did not feel like an invalid, a freak, or an imposter. I felt cherished and loved and it was good to be back. Back home.

I took all my pills and ate at restaurants. Ask anyone who knows me, I avoid restaurants if I can. The food choices always excacerbate symptoms. but not this time. I did what the Romans did and really felt like the trip was not all bound up in my illness, but let the sun shine on everyone.

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Subject: what's in a name Posted Date: Thursday, May 11, 2006 - 7:09 AM

I left the bay area and moved to Italy. In Italy the anxiety became a blanket, which suffacated me to depression. My mind started to wander, then to whip and whirl around. I counld not trust my eyes, or my stomach. I lost weight, I lost perspective, I lost hope. I never really came home, not to the Bay, but I wandered in NYC and later to VA. I made new friends, people who knew me ill. It hurt too much to talk ot the older ones, the ones who could tell how I had changed. I wanted their love, but somehow, I could explain all day that my guts were shredded, and that I could not think, and that the neologisms that poured forth from my mouth were becuase my mind was messed up.

I tried to give them as cause for it all as I tried to explain it to myself. Allergies, brain allergies, a yeast infection, inability to metabolize fats, all sorts of wrong turns and false starts. They looked at me blankly. I think they all suspected I was making it up, that I should snap out of it, that I was always a little conceited and that it had taken over. They drifted away. Noone asked how I felt, or how I was doing. They seemed embarassed that I insisted that something was wrong.

All that changed with a simple phrase. Schizophrenia. It doesnt mean anything, that. They do not know the cuase, or the cure, so all it is a group of symptoms that are similar. It is medical for "I do not know". But all the same, all those shrouded looks of disblief became acceptance and pity, and help began to find me. and the people who wanted me to act normally, now accepted what I had told them and who I was.

What is in a name? A lot. It gives people a frame of referecne, and like itor not, a healthy strong 30 year old, who complains he is sick is questioned, doubted and suspected of having mental indulgences. Enter a word like schizophrenia ans he is transformed into something that can be approached. It was hard, all those years, watching those I loved and respected tune me out. Somehow, its weird, I feel part of a family now.

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Transfer #21

Subject: been a while Posted Date: Thursday, May 04, 2006 - 1:40 AM

Sure, its been a while.

There have been good days and bad. For those of you left caring, or checking, or bored. Saturday night was disastrous. That day, as soon as I got out of bed, I felt it. A dull flatness that expanded during the next hours. It was like walking Ian fog, I could not put ideas together. It was like constantly waking up with no context to tell you what is going on. I lost ideas, words, sentences. I got confused. I thought it would get better, but it got worse. I went to a dinner part, and had hoped to make a much anticipated dance performance, but I had to get up and go home. I was humiliated.

If I had gone, there is no way I could have understood what I was seeing. It was like the bad old days in many ways. I gave away my ticket hoping someone could use it. I felt like a waste. I walked home, while everyone else went to the theater. I lay on the couch fully dressed watching another Saturday night drift away. So many nights, so many evenings, so many days lost and gone forever. That's how it feels, like you are there, and not there. Its worse than being out of it. I recall being at law school and talking to a good friend and not being able to understand anything he was saing and smiling and nodding and feeling dead.

W came back from the dance. I was torn. I wanted her to come back, I didn't want to be alone, but I also did not want to drag her down into my well of self pity. I hate being alone, but more than that I hate burdening people with my illness. I feel, often, like a burden. I feel like I bring people down. I see them stare at me, and sit in the uncomfortable pauses left when my mind if, again, on the blink. I hate it all. So, generally, I stay alone.

People tell me that I can only be myself and let others decide if they want to be with me. But still, I feel like some of those people are there out of guilt or pity and some are there for old times sake, and others still are not understanding my limitations. It is rare I feel like someone really is just enjoying what little I can really give them.

Sunday was better. The evening even great. I had a surf, and a dinner partty and talked and enjoyed myself. That night, I was high from caffeine and could not sleep, so I slept on the floor as not to wake W. Monday was weird. I felt odd. Everything was moving around. That evening it cleared up, and Tuesday was fine and yesterday was one of the best days I have ver had. Weird like that.

So Tuesday and Wednesday I felt almost like my old self, except distrustful of my wellness. I felt like leaving the office and never coming back. I felt like starting over, and just walking off. I was sick and tired of ebing sick and tired, and I felt hopeful---except that I have learned not to be hopeful. So I enjoyed what I had there, let my mind wander into fresh green Fields and pretend that none of this has ever happened.

A clean healthy mind is an amazing thing. It is like glasses, but better. I can think broadly and on the outskirts of my mind I can feel a future. But I am unschooled in using that mind, and have learned to be cautious about expecting it will be there.

I am traveling to CA. I am afraid. I am afraid that it will all come crashing down. Again. I am afraid I will fell that subtle twinge of failure, of a life wasted. I am afraid that it will feel like home, and I will feel lost. More than antigen, I just want this to be over. I have never accepted being ill, and because of that I have found help and healing, but I am uncomfortable accepting any limitation.

And my god am I burnt out. I have been talking to friends and I have noticed, east coasters get burnt out and change jobs, west coasters get burnded out and pull up stakes and just travel for a while. There is a difference between the coasts. I think westerners think of themselves in a natural state as unemployed free agents, who then accept work restraints for the beenifts of a paycheck, and easterners think of their natural state as employed, with vacations and sabaticals.

Well, nothing particularly interesting there. I have a doctor's appointment tommorow. I will see if this woman is going to be a good fit with my treatment team. I will keep you posted.

M.

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Subject: energy Posted Date: Wednesday, April 19, 2006 - 7:36 AM

Energy amblifies all the body processes. This was a major tenet of my recovery. Energy improves your intellect, your sexuality, your consciousness, your creativity, your physical strength, your mood, your spirit and, most importantly, your capacity to heal yourself. To heal myself I sought to increase the amount of energy available. I did this in many ways.

1) I changed my workouts. I used to labor in the gym and sweat out long swims in the pool, relying on endurance activity. When you are exhausted internally, it does not take much to notice that these are draining on your energy reserves. The stress is too gradual to force your body to adapt much, and instead it consumes itself slightly. I chose intead brief and intense excersize to encourage my body and mind to remodel themselves. I told them they needed to be strong, fit and rested.

2) AT. I picked up alexander techinique which teaches that emotional and physicall stresses are stored as body tension. the AT idea is not to drive them out, but to learn to work in a centered natural state with no excess enrgy being used. To find and preserve balance. I used to get winded just walking. I drove myself forward. After AT I learned to use my body and not work against it. Strangely, I discovered also that to relax a painful knot in the body usually relaxed the corresponding knot that was formed in the mind. An emotional expreince I assure you.

3) meditation. I began 3 years ago now. It was not easy for one in my condition, but I kept at it. It is its own reward. I approached it as a method to dissipate tension by lwering brian activity to the Alpha range and dissapating stress at a rate vastly greater than the rate at which I was storing it. Along the way, I learned to shit off my mind, and to listen to my body. It gave me a great internal compass.

4) Fun. I recalled how to have fun. Fun is the practice of moving with energy, of channeling it. It is a skill. You can loose it.

5) Diet. I went through some freakish diets, but at last hit upon an approach that required little energy to digest, and gave a lot of clean energy. sugar wiped me out. It caused my body great distress. Today, I can hardly feel it, but I assure you, when your adrenal glands are on their last legs, youappreciate what a rain it is on your body. I chose to view food as more than fuel, but as the raw components of my newly constucted body. Food replacing amino acids in cell walls, and fats to lips structures and hormones.

thats about all I have for now. I am still at the office and the sun is setting. I will go now, but have a thought about this. 6 years granted me some good lessons. and this is one of them. Energy is something that needs to be thought about. LAter, I will talk about what happens when it has nowhere to go. But for now, enjoy your sermon dear readers.

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Subject: preparation Posted Date: Thursday, April 13, 2006 - 11:59 PM

If you want to help people, you need to prepare yourself. You need to take seriously your mental, physical, and spiritual training to give you the leverage to move things. I was preparing myself when I got sick, and the discordance between the path I was trying to walk, and the path I was forced to walk was tough.

That was a strange thing. I never gave up my training. I tried to move forward in the areas I still could. But what now? The common approach when one has been through a formative crisis is to apply oneself in that feild. But I do not know taht this is what i want to do. I dont know that I feel moved to help other schizophrenics. Is that cruel of me, or does that merely reflect the fact that I am no so far removed from the crisis period to feel like I want to come into contact with it. In my life, I feel like I have been good at putting things down when I no longer need them.

Now it is time to again reassess how I will be useful and what impact I will make. I need to harden myself in places, and make myself supple in others. I think I need to focus mind and body a bit, but this will be a work in progress. I like the feeling that I am picking up the pieces.

It is not a decision for today. I am hardly more than improved myself, and still a long way from recovered, so perhaps I am getting ahead of myself.

This entry sucks, but it has been here all day, so I will share it anyway. I hope you did not waste your time with it.

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Subject: sing with us Posted Date: Monday, April 17, 2006 - 10:38 AM

I've got to admit it's getting better, better
A little better all the time, it can't get no worse
I have to admit it's getting better, better
It's getting better since you've been mine

Its true. Its a d*mn good day not to be crazy anymore. Best day that I have had yet. It is strange that I was down so long that I forgot what up looked like. Sincerely, and without being trite, by suffering from the dispercetptions for so long, I actually got a bit disoriented and forgot what it felt like to have a nromally functioning head. At first I could not place it, but healthy is such an undeniable attractor.

Regrettably I spent the whole of the best day in 8 years in my office, watching the boston marathon from a distance, and wondering what the sun feels like today. I am cleaning up my boss' mess, and I dont think he even knew today was a holiday. Am I bitter? not, not really, I am pleased to be normal, and normal p*ssed, and go home to eat and be normal again.

Just that.

Of course, I have never been normal, but that is a thing for another day. I suppose one interesting observation is that I think when one hits upon sustainable health, one can tell that it is steady. There is no tiny tremor of fear for relapse hiding underneath. or perhaps I am just being hopeful. I hope not. Hope was something I think best left to the carebears. It sets you up for failure, and takes the wind out of success. I dont hope, but somehow still, I believe.

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Subject: No names Posted Date: Tuesday, April 18, 2006 - 5:01 AM

Today I was intoruced, in a way, to another soul on the same miserable path as I. Of course, he is still quite far down still. They estimate that schizos make up less than .5% of the world population. Through in suicide and the number of adult schizos is truly small, 100 million in the US. Still, with that few ScZ in the world today, I have run into a lot of them as soon as I started being open about my condition.

So I got a letter, and it took me back. It took me back to the begginig and the fear and loneliness. I wept when I read the letter, short as it was. I dont reall know a thing about him, and if I did, I would not share that here- it has been my, involuntary, decision to go public with this but I respect the privacy of others. So all that you, dear readers, get to know, is that he exists and how I feel about that.

1) I feel sympathy. That's important. I have one friend, and you know who you are, who is going through the same recovery, and she can sympathize where others can only empathize. Her eyes look different. There is less pity, and more concern. There is fear in her eyes, and there is shared pain. It is different. It bonds us together, and I never need to tell her I am sorry for being crazy. I appreciate every concern, but sympathy is a rare commodity in this situation, and it makes all the differnce. I know how he feels.

2) I empathize. He is in a place I never want to be in again. He is in darker places. I dont know those walls. I dont know what the air smells like there. I fear it though, and I offer him my empathy.

3) Hope? I never tell someone they will get well. this kid though, it sounds like if there is a way, he will find it. He has a supportive family, and he has found people who are less worried about publishing, or even understanding the process of mental illness, than they are about curing people. I respect both sides, but I am not an exhibit, not an attraction, or a study. Heal me. Now. I cannot wait.

4) company? I think this kid has the same symptoms I do. It makes me feel less crazy when I hear that someone esle has them. It makes me blame myself less for letting it happen, for being weak enough to fall prey. It makes me feel normal in a way.

5) resusitated. Yeah, I cant spell. If it took you untl this entry to figure that out, nor can you. I feel like the last 8 years are slightly redeeemed. Not a waste. It happens. It happens to people, good people, young people, healthy people, strong people, people with futures, and they all deal with it. And how they deal with it is as mucha part of thier life as the time before the curtain fell.

6)--- I am out of things. I hope he joins us here. I hope he finds this blog one day. I hope it gives him hope, or at least a goal.

Say hi if you can people. We all need a little company.

Transfer #20

Subject: the hammer Posted Date: Wednesday, April 12, 2006 - 2:36 AM

I am waiting for the hammer to come down. It works like this, so far as I can tell: I pull an all nighter. As the evening wears on, I start to feel better, fewer symptoms. This is not extraordinary, as I have read, as the dopamine in your system decreases and dopamine is what makes the symptoms so bad. So I actually feel good. The next day I feel tired, drunkish, like anyone else, but without any symptoms. Then I sleep, then the next day the hammer drops down on my head. So far, so good today, but it will happen after an all nighter Monday night. Or at least it has always happened before. So we are waiting together. You and I.

Oh, how was the visit to the Dr on Friday? Well, thanks for asking. It was...The usual. She sounds good, caring, and asks the right questions, says the right things to encourage me to believe that she will take an interest in my case. Because that is what needs to happen. She took an EKG and blood, so soon she will learn that I am totally healty. My heart is in great shape, and all my peripherals look right on target. She will discover that my billiribun is high, and perhaps my SGOT or AST. She will order a liver panel. It will all come back normal, or slightly elevated. Then she will lose interest. This is how it goes. I will give her a copy of my medical records, and that too will disappear.

It is not her fault, or at least, if it is, I do not blame her or hold ill will toward her. The system will not allow a doctor time to think about a case for which there may be no end. She can treat a disease, a condition, something that has blood work and medical textbooks, but for my position, she will need to do a lot of research. That is time for which she is not compensated. That is time away from her family, friends, and loved ones. That is often a path that leads away from her training, and in the past, bright and well meaning doctors have all dropped the ball. It is up to me to use her as a resource, and I will do so again, but just once, I wish that the doctor took a little of the burden up for me.

She told me that she was out of her depth. That is a good thing. Intelligence is not the marker of a good doctor. The ability to tell a patient "I don't know" is the only lindicator in which I trust. I will have to get her excited about the case, but at least she will not let pride get in the way. I hope. We will see. I have another appointment in a month. I promised to get her a copy of my med history and some materials on schizophrenia and orthomolecular treatment. I will. But I am in no rush. I have gone through this probably a dozen times. I will treat this like I did my healing, without hope, but with determination.

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Subject: Pharaoh Posted Date: Tuesday, April 11, 2006 - 10:17 AM

there is an old black man who habitates the YMCA where I sweat twice a week. His name is Phraoh, and he has eyes like a baby, bright, and hopeful. He yells at everyone, and is a noted personality. He has quite a background, some of which he talks about, some of which is echoes in the way he looks you uinblinkingly in the eye. He is a bright man, educated, but poor perhaps, as he wears dingy old sweats. He feels like a man whose welth is inside, but that could correlate with exterioir welth just as easily as not. In my experience, the people who lead daring and focused lives full of spiritual satisfaction look young. Pharaoh claims to be 70, but looks 60. Maybe younger.

Pharaoh is a kind of sage, a preacher, a mentor, and a pain in the ass. He likes to grab my head when I walk by, give me a quick hug, and then tell me "I'll kick your teeth in, you know that don't you?" such is Pharaoh. Everyone listens to Pharaoh. He commands eveyone's respect, for respect is something earned not given. Is the stage set yet?

Pharaoh and I have conversations. not often. Sometimes months apart form each other. Pharaoh reminds me that life is not lived on my schedule, so I stop and listen when he opens his mouth, even if i am late.

Tonight he talked to me about growing. Maybe growing old. He began by telling me he used to run, that he now walks, that there are concenssions to age. Then he began ot really mount the pulpit:

Mission:
Pharaoh has been in the public service sector for the last 20 years. He is quite, but firm. He takes a reduced role now. He told me, (and I must paraphrase here, "You have to be careful not to loose yourself in your mission. There is a danger there. Many poeple love the people they are helping, and forget to love themselves"

Love: "I love me some me". You cannot rely on other people to love you in the way you need love. It is unfair to them and obstructs them from seeking the love that they need. You have to love yourself and love life. I love life. It is a beautiful world, and I love it even when it is falling down. That is the trick, to love life, and love yourself when everything is hard on you.

Warp: Young people beggining this precoscious careers. I see them in their 20s in thier 30s about to do great things. They are concerned with the process, concerned about what it might do to them. THey are anxious that it will warp them. It will affect you, it is up to you to determine how. You need to ask yourself who you are, and set benckmarks to rigorously defend that, lest you melt away. Those young people, they look around them and they are afriad to become some of thier neighbors. And they should be. we see them across the street mowing thier lawns, but their are cracks around the edges. You have to work to keep a sense of self, to keep track of your message, and to work daily ot stay in love with life.

Pendence: In a relationship, the hardest thing is interdependance. It can quickly become co-dependance, or fade to independace. Interdependance requires work and sacrifice, and a sense of play.

ADjustments: Growing old is about making adjustments. If you refuse to change, life will break you down. You are then foolish. I am foolish, I looked in my youth at things before me that I knew would have consequences, and I accpeted those consequences and I went forth. I am foolish, but I know I am a fool. But the rules change, and you must adapt with them, careful at each stage to find your balance and to refuse to find happiness in something outside yourself.

There was more, much more, and I am not getting this down, but Pharaoh has spoken, and I thought I would share.

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Subject: Golden Years Posted Date: Friday, March 24, 2006 - 3:12 AM

Yes, I go on at length about the "missing years" from 98 to present. But I know that at least one person in my life has asked me the obvious question "did you get nothing from it?". I am afraid I didn't give her a good answer, and she deserves one. Everyone who has been part of those years deserves one.

Where those years, unqualifiyingly nightmarish? Did I not know happiness? Was there no moment of joy?

Its hard to answer that simply. I peer back into the dim past and I shudder. But that is Because I focus on what went wrong. Through these years, I lived abroad, made many good friends, had adverntures, went to law school, even fell in love .

In short, there is no short answer, but the answer generally is yes, or no, or, well- there was pleasure, joy and things worth remembering.

I remeber biking through NYC on rosantante, my 3 speed bike, with frank sinatra on a mini disc player. I remember movies at the 2 run with Gennifer Gin. I remeber rock rimmon road, and enjoying long weekends over new years. I remember surfing and sunsets in Pensacola. I remeber Costa, I remember dinner parties and poetry reading, snad ballets.

There was pleasure. The experiences are not all so polluted that they cannot be counted. I think it is more accurate to recall the events as obscured, sometimes, a small amount, sometimes completely, but that does not mean they were not enjoyed. There were some, many, days, so awful that I wish they had never happened. Days pinned to my bed, or crushed by the weight of paranoia and fear on the banks of the Naviliglio. But more often there were days where I wanted to do more, or do somethign that was impossible. And that was the reality. nto feeling right. feeling weird. Seeing the world in a distorted fashion. but I learned to parse out the good from the painful, I learned to forgive myself and enjoy.

I remember the first day I realized that I could be miserable and happy simulatneously. I met with Gil on the banks of the east river, and we ate. I brought some f*cked up conconction with me to stave off the inevitable migraine etc...but it struck. We went bak to her apartment, and Gil made a soy shake of some kind, and I lay down on her floor Because I didnt have the energy to stand up. I was crushed by derpression and could nt make sense of the world around me, but Gil kept talking to me, and I remember laughing at what she said and the ridiculousness of my situation. We talked about my finamily, and then hers. And when I realized that I cared about what she was telling me, through all this, I was ok enough.

I remember dates. I remember that visitnig my dad in the spring of 05 was the first time I was able to enjoy his company and not just survive it. That is, prolonged exposure to another person was n something I could do without getting wiped out. I usually limped home form evenign, and only later could enjoy the things that had occured.

I remember a trip to Istanbul, where there were weird days, days that did nto filterin right, but for the most part, things were normal. There was talkign, and laughing and walking and I began to dream again.

I was always frustrated with what limitations I had on me, but within those limitations, I lived as fully as I could.

This is not a full answer, but an answer.

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Subject: all quiet Posted Date: Thursday, March 30, 2006 - 7:27 AM

Well, dear readers, nothing much to report, but then agian, nothing is great when you have been on a long journey of horrible. That said, there is somethign on the horizon for those of you interested in my latest head tweaks. Those of you who are not, I hope, have long vacated this blog, and if you have'nt, well then, I never really intended an audience anyway.

Moving on.

A friend of mine gave me a recommendation of a physcisian. I need one of course. It may be repairing ym head, but taking enough folic acid and niacin to kill an adult male cannot be a good idea without adequate parental supervision. [note to readers- there is actually no known toxicity for either of them, this is just poetic license]. And besides that, I need some help figuring out what to make of recovery. You will have to imagine that if .5 % of the human poplation is schizo, and 35% of them commit suicide, and of the remainder 30% recover, but only 5% of my subtype, then you have a really miniscule number of people from whom I can take guidance on what to do. And most of them are not talkin'.

So I am going to the physcician's next week, Friday. There I will walk in, let her take my pulse, then tell her I am nuts. Recovering nuts. I will monitor closely her reaction, and then I will ask her for a psych to help me out. lets hope she handles this well. My last doctor did, but was not too helpful either. I hope she can give me a good recommendation. If she passes the test, I will name her my PCP and see if she can become that elusive clearing house for my treatmetns. I am so tired of being the backstop on this affiar.

So thats it really. No, there is much more, but also a looming deadline. Thanks for your attention.

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Subject: weekend Posted Date: Monday, April 10, 2006 - 4:17 AM

I woke up this morning feeling different. Difficult to describe, but not difficult to appreciate. I felt focused, and quiet. I felt soft, and light. I lay in bed and I thought about this weekend and I smiled when I realized how quickly we forget.

You see, schizophrenia is made worse by stress. But guess what, so is everything. No news there. I guess what is amazing is how little we notice the building of daily tensions and their cumulative effect on our well being. You see, for the past few weeks, I have been sleeping adequately, enjoying work more, and witnessing the first breath of spring. I had been feeling better, much better, healing quickly. But this morning, I woke up and I just felt different. Whole. And yet, looking back on this weekend, those very elements I hold as primary in my concept of relaxation- sleep good food and the absence of new threatening stimuli, were all absent to one degree or another, yet I felt changed. what was the differnce? I spent a weekend concertedly being happy. Putting work on hold for a change.

I guess there is nothing really novel in this post, excpet that it seems I have a temporary stress control disorder, ( If you are familliar iwth my stress analogy, I guess it looks like this. I had a bathtub, then a thimble, now I am moving back to a bathtub.), and that gives you persepctive into the effects of stress that neither someone with no tolerance, or a lot of tolerance, could achieve. And my observation? It takes a long time to come down from chronic stress overload. And when you are under your tolerance level, every thing you do works better. I went down South and for 48 hours, or more, was surrounded by love and good friends. I ate late, slept little, drank heavily and was outside my routine, yet I had no books, no work, no phone, no chores, calling me back. More than the absence of pressure, was that I adamanatly pursued joy. [yeah fit me for the berkenstocks and tie dye now]. Relaxation, like hard work, deserves your attention. What is that lame saying...you don't want to be the minister who is praying while sleeping wit his wife, and thinking about sleeping with his wife while praying. Take them both seriously. It is your life. You need that balance. They are both of the utmost importance.

So is not getting out of bed until 7pm. Or eating pork ribs at 2 am. Or resolving what happens when the dairy princess of Iowa meets the fashion queen of new york. Or discovering what all the fuss is about with DH lawrence. You can't screw around with screwing around.

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Transfer #19

Subject: update Posted Date: Thursday, March 23, 2006 - 6:15 AM

Alright Sportsfans,

I tried to keep this blog to issues about being ill. Ok, to be honest, for those of you who are long time readers, you will recognize that I didnt intend this to be a blog at all, but through a complete misunderstnading of Myspace, started posting what I thought was an electronic journal on line.

I find I have the most time to write when I have the least time to write. And I have no time to write right now, so here you go...

I have nothing fun to report. No visual disturbances, no voices, no thought disorders, no painful migraines, no twitching, no paranoia, no swelling, no depression, no unusal exhuastion, no dizziness, no disorientation. Nothing. I mean, I am not completely well, but I am so close, that I am entereing the realm of normalcy. So do I contiue to write? Oh yes. We are not home yet. There are still dissonances that need to be adressed. Digestion is still a sometimes thing, and there are all sorts of interesting things that come up when you come to one day and realize you missed a decade of living.

BUT- I have this fantasy in which I have a blow out party to celebrate my recallection to life. I will have this. I have been saving for it. I think it should be wedding big, but then again, the turnout will be lower. I want to make it a big party for everyone who made it through this with me, and invite those that never understood. There would be precious little speech giving, but it would be a celebration of mental illness. Wee. Crazy people party. Sometimes by themselves and with huge dance halls of people you cannot see. Anyway, I am going on a bit...the point is that I had always wanted to do this on my birthday, you know, tying in the rebirth theme, and I figured the year would be 2007, exactly one decade from onset, but..drumorll...I recently realize that I might be able to do it this year. I mean, forget logistics, but the point is that I feel confident this is the end. If you know me, you know I am many things, but unrealistic about my recovery is not one of them. I have been accused of being too hard on myslef. This is for real.

So...I will figure out what to do with this blog, with the missing 10 years, the expectations, sense of responsibility, the pharmacopia and encyclopedia of cures stuck in my head where Ted William's OBP is supposed to be.

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Subject: Triggers Posted Date: Wednesday, March 15, 2006 - 5:24 AM

They say, ok research indicates, that a stressful event precedes onset of schizophrenia in the vast majority of cases. It did in my case. I moved to Italy, and did not have enough money for food. I dropped 30 pounds and I worked 16 hour days for months.

Could I have avoided this by having treated myself better? One thing is for sure, once out, the genie does not go back into the bottle. Genes, I am told, are best understood as swtiches, subject to if/ then rules. Perhaps the genes I have never said "schizophrenia", but rather, "if the stress threshold is exceeded and exhaustion is maintained without letting up for too long- then express gene X". Could I have avoided this?

Its not just schizophrenia you know. Think of diabetes. Once you ahv punished your panscreas badly enough for long enough, it just gives up and you are on your own, a life time of medication. After that you can manage it, but you are always diabetic. Most chronic conditions seem like that Epstein Barr, Krohn's, MS, IBS, candiadiasis. JFK- one horrible night on PT109, and his adrenal glands never funcitoned properly again. He took adrenal extract the rest of his life.

So its a nasty thing. We all have a gentic stress threshold. For some people it is a wash tub, for others a thimble, but one thing is certain, once you exced that limit, through small daily stresses over time or one cataclysmic event, your body will break in gentically preordained ways. Want to know what yorus are? look at your parents. Cancer, heart attack, whatever. Thats your little ticking time bomb. Mine came early. Enjoy.

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Subject: double bloggin' Posted Date: Wednesday, March 01, 2006 - 3:12 AM

Ok, short one.

Why is it that everytime the symptoms get bad, it feels like someone threw a grenade into my gut. Seriously, it feels like there is broken glass inside. And its not my imagination. My gut swells up and looks kinda mini pregnant. It hurt, and it burns. When the symptoms subside, the gut is fine. When it is in pain, I cannot eat. I fear eating.

Have I mentioned this sucks?

I did watch Murderball the other night. Quadripelgia also sucks. A lot. I would hate to make a choice between schizophrenia and quadrapalegia. I guess, since I am healing, I know whihc I would choose, but I want to acknowledge that just becuase this is a crappy roll of the dice I got, I understand there are many others as bad or worse.

By the way...its all getting better. Started passing away at 2. I thought this was going to be a 2 day affair. If this holds true to course, by tonight I will feel better than I have since onset. This should last at least a week.

ok, get back to work.

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Subject: down Posted Date: Saturday, March 04, 2006 - 1:13 AM

bad couple of days. I thought I was climbing out, but I was wrong.

Sh*t.

I really dont know if I cna hold on much longer to this life I lead. That is, I dont know if i can go on working, at least as an atttorney. Some rare days, my brain is working, and I like my job very much, but most days, my head is filled with cotton, and reading is hard, and thinking is hard, and I am overwhelmed with exhaustion, and ideas dance through me, and the halls twist when I walk doen them, and I wait for it to pass, and everythign takes me too long to do, and I ...I cant do this anymore. I know I can do this job, but not everyday. And they need someone everyday. And I mess up when the symptoms get bad, and that is not my fault, and it is my fault. At some point here, I need to realize that I am imparied. That I am nto normal and might not ever be again. At some point I will need to accept my limitations, and reign in my expectations, becuase hoping, expecting to be better is killing me.

I read about people who have "recovered" from schizophrenia. ANd ususally, of cours,e these cases are for people whose symtpoms were worse than mine, but theier recovery means managaing the symptoms, and finding ways that they can find some happiness in this life and a way to stay off the public dole and contribute to the econmony. Bleah. That sucks. But I am beggingin to realize that might just be something I need to inspect. I am an attorney based on who I was when I was well...for the most part. And I cant be him everyday. Most shizos have trouble with maintiniang a job, but I cannt be dependant on others for my well being either. I am scared. I need someone to hold out a candle of hope for me becuase it is awfully black. Someone to tell me I am going to be alright. Sometimes it gets too hard.

Yesterday was hard. Really hard. I wanted to cry all day, I was so pissed. I was so angry and frustrated. I can see, feel that person I was right on teh periphery, but I cannot get to him. Every person I talk to, I talk to through a haze of disperceptions. They warble, and their voices jar, and their faces move. And each person I do not know well, and some I do, sets of anxiety attacks that might last the day. I am lonly, but company makes me feel so ill.

I feel like I am living in that twlight of a sunday afternoon, with saturday wasted, and the week about to begin again. Isnt there a Johnny Cash song about that with swoonign orchestral moments? I wish someone had refused to indulge Johnny in sweeping orchestral moments. "Johnny? you do many things well, symphonic poetry is not one of them."

Well, thats it.

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Subject: not much Posted Date: Tuesday, March 14, 2006 - 4:16 AM

Havent really written much, mainly becuase I have been susy,but also becuase I have been rapidly improving and for the most part I try to limit this blog to my head and problems associated with it. And frankly, I have little to comaplain about. And that seems like an odd silence.

Last night, I was cracnking away at a breif, adn I realized that I had bigger problems that schizophrenia. You might think...my gosh Michael. those are some problems, but you would be missing both the problem, and tact. And there would be the issue that you use the word "gosh", but I would let that go to make this point: for 8 years, nothing was a bigger problem than this. Oh, thats not entirely true, there have been some really hard times that have overshadowed my immediate condition, but the point of last night was that I was working, thinking of the future, and thinking about money, and location, and happiness, not "When will this end?" Thats a breakthrough. I think the human orgnaism has a tenecious preference for balance, and stasis, and not illness, or dis-ease. It fights to regain itself. This is one reason why being ill is so hard, it feels so odd, and every cell is clamboring to be returned to proper functioning. In healing, we always try to heal faster than we can. So did I and so must you. But over time, the mind learns to appreicate its limits, and so did mine. It has taken a long time to reclaim that assumption that everything is going to be ok.

I went to New ORleans last weekend. One night. I went with W, and we walked the mississippi, over to Jackson square, down Bourbon, for effect, then out to the far side of the French Quarter to the area that seems to be inhabited by denizens and not tourists, and we stopped for dinner, and I ate a roastbef snadwhich and potato chips. Can I tell you the last time I ate potato chips? 19---something. I mean, they have been giving me problems for years. I had a boudin, and all this simple diner fare, and, AND, never even thought about it.

In law school, a mere 3 years ago, I was so bad, that I trmebled before I ate. I knew it would hurt. First my gut, then my joints, finally my head in a slitting migraine. Every meal. I ate alone, I ate a carefully monitored menu of safe foods, foods that had less of an effect. I gave myslef a near master's degree in foods, learning which ones were hypioallergenic, which ones gave me the ebst chance to heal, which ones were healing, which ones made a body strong, and which ones made it weak. All that I toted in my head a like a paranoid encyclopidea. Every meal I could tell you macronuitrient content, approximate claories, vitamins, preapration, the cultural background that produced it, from what tradition it was derived, what it would do to your hormones... I had no choice, I just knew all that stuff.

Well, saturday night, I just ate a sandwhich, and talked with W about movies and nothings. W paid and we left. that is, dear readers, where this narrative will stop, but it was a magic evening to be normal, to walk in NO, to be with W, and to be able to take it all in and appreciate it.