Well, Joe just got home from the Lahey Clinic in Burlington and the verdict was not good, though it was what I expected: his pulmonary capacity is only 40% of what it should be. He now will need an assistive breathing machine - called BiPAP - at night to help him get a good night's sleep and be less fatigued during the day. It should help his stamina as well, since I think he was getting tired more easily because he wasn't sleeping well, nor as long as he needs. It should also help his nightmares and middle of the night awakenings, which I think were because he was in a more superficial state of sleep (REM) more often (due to lack of oxygen), rather than getting deep restful delta sleep. I had a suspicion of all this before he went to Lahey, but figured it would be better for him to hear it from the experts than as speculation from me. I wish to god I had been wrong...
Now we need to find out how to go about getting not only the BiPAP machine, but a suction machine for his saliva, which he finds hard to swallow, and a cough-assist machine to help him cough up what is deeper in his chest than his diaphragm can bring up on its own. Plus, we've been told that he needs a feeding tube put in soon, or he may reach a stage of respiratory decline where it will be too late, too dangerous to put one in. Joe wants to go the tracheostomy/ventilator route so a feeding tube is imperative. His tongue is going, as is his speech, and without a functioning tongue he won't be able to swallow even if he is still able to breathe at that point.
This is really scary, because respiratory function, and the diaphragm muscles, are supposed to go late in the illness, not so early. For Joe, it is among the first muscles to fail. Except for Joe's tongue, this is his only other noticeable symptom; his arm and hand, leg and foot strength are all really quite good. No wonder he wants the vent. Life is too good right now, what with Zyprexa and his well-functioning body and brain, for him to want to toss in the towel. That may change as he becomes more debilitated, but I can appreciate where he is coming from right now. It is so hard to think of this good-natured, optimistic, ever cheerful and attentive man dying now, in the best years of his life, and while he has every other capacity still intact but his breathing. If I were he, I'd want a vent too, no matter how many people with ALS opt against it.
Have I talked about the "little people" or the music in a while? I don't think so, so a bit of an update. I no longer hear threatening voices, or voices that talk about me or that comment on my activities in a nasty way etc. You all know the sort I mean. At least, I haven't heard any in the past 2 weeks. But what I do hear, constantly and almost without a break, is music -- either women singing in a chorus, something unknown but sweet-sounding, or a mixed choir singing something more complicated and classical but again new to me, or once in a while the singer I call Old Man River, because he sounds like the guy who sings that song, a deep, weary, sad voice singing about some injustice. Sometimes, though, it is just a piano playing a simple tune over and over and over. As long as I don't recognize these pieces - sung or played - they stay in the background as "white noise" and no longer bother me. I'm completely used to it by now. It's only when the music is familiar and repeats like a broken record, but with mistakes or variations, or weird and sinister changes that I pay attention and get distracted by it. Then it is rather like the tune that gets stuck in your head that you can't get rid of, that annoying and distracting, with the one difference, that I actually hear it outside my head.
The Little People are different, as you may recall from a previous discussion of them. I find them amusing, not bemusing or disturbing, though my telepathic communication with them, when I discover that I'm doing it, is rather disconcerting. They inhabit various personal items, like my hairbrush or eyeglasses, or even the scotch tape dispenser or my own hair. Perhaps I should say, rather, they are those things, though I think of them as different from the substance they are in. In any event, these "little people", or the substances, say the tape dispenser, might suddenly say to me, "I don't think I'm feeling very sticky today. Use another roll of tape." And I would answer, "Oh, come off it, I used you yesterday and you stuck just fine." The tape dispenser then might sniff. "Well, just because you're stuck up doesn't mean I'm sticky!" Then I would probably tell it to just shut up and let me get on with doing whatever I have to do. That sort of thing happens all the time. So much so that I hardly notice that we're doing anything unusual.
Just the other day when I was cooking homemade TV dinners for Joe, the freezer containers for them started talking, first to themselves and then to me. I've forgotten what the subject was exactly, except that they were bickering about which one got more noodles than the other five. I had to go over them and make sure all portions were exactly equal just to quiet them down. Even then there was grumbling, especially when I put the meatballs and wine sauce over them. Boy, you never heard such complaining about who got four and who got only three meatballs! But it would have most bizarre of all, should anyone have come in and seen us, conversing away...
Except of course, they would have seen nothing unusual, would have known nothing about what was going on, but that I was being very careful to make each portion the same. Because, as I realize now, the containers weren't actually talking and neither in fact was I. The whole thing was a creation of my brain. In truth none of it actually happened, I just believed it did, and experienced it as if it happened. But as I learned recently and painfully: what I experience and what is real are often two very different animals.
But in general, these "little people" experiences assume their proper proportions and stay where they belong: in the realm of pleasantly bizarre gifts that having schizophrenia may have bestowed as compensation for the horrible parts of the illness. I generally recognize afterwards that they were not real, or at least that they were the "little people" again, and that my brain created them for my entertainment. They have never done me harm nor caused me anguish. The worst they've ever done, while inhabiting the laminating paper -- their first incarnation in recent years -- was to use their powers to give me lousy titles for my collages (because only the laminating paper had that power - don't ask me why).
As you may recall, I have seen these Little People at times too, quite vividly, coming down an invisible line from right to left, almost the way a backwards comic strip might, except that this is more like a movie than a comic strip. The action unfolds as the activity proceeds, coming closer and closer to me, as if time and the action are one and the same and are flowing together to meet me in the present, where I am to assume the "story" actually starts. But in fact, where the story starts is where the Little People cease...because I don't know the future and neither do they, so I can't watch them further, except to observe them in the present, and for some reason that is not possible.
If all this seems supremely weird, it is. But those are the Rules and I only know that they go by these Rules or cannot appear at all. I dunno. Maybe it is all too weird. Has anyone else had experiences like these? Do any of your voices amuse or flatter you? Do you like any of them? Are there any you miss? If you have any, tell us some of your stories about more positive or lighter aspects of your illness.
Posted by pamwagg at September 20, 2006 06:08 PM
Dear Pam and Kate,
I forgot to mention a few things that I feel are very important. First, I am delighted that you, Kate, and Cynthia, Yaya,Donna, Sue, and others have added your support to Pam, her blog,and her physical and psychiatric problems by your exceptionally insightful and well written comments. I am so delighted that I am no longer what I felt to be for a while,"a lone voice, crying out in the wilderness". As I have stressed before, as helpful as I might try to be, my words do not carry nearly as much weight as those of you who have directly experienced what I can only imagine, although I stuggle to understand. My empathy for all who suffer in any way has sometimes threatened to overwhelm me, but I cannot understand how anyone could remain indifferent to the pain and suffering(the gerund "suffering" is for you, Cynthia, should you read this)of one's felow man.
Secondly, In a million years I could never have hoped that all of you would have appeared, "like magic", when I mentioned to Pam that I could not understand why the comments her blog received appeared to have diminished. She really needs the wonderful feedback that you all have been providing to feel that her blog is important, as we all know it is.
In closing, Kate,my miracle child, thank you for being able to see beyond my incurable theatrics(Pam knows them well)and be able to thank me for being what I am, a person who feels for those in pain and who admires the admirable.
Thank YOU, Kate! Warmly, Paula
Posted by: Paula Kirkpatrick at September 24, 2006 04:15 PM
You are so sensitive and kind. Pam is very lucky to have such a smart and faithful friend. And it does help to hear someone "normal" acknowledge the pain that those with mental illness suffer under and hopefully through. The human spirt's ability to endure through the most dire circumstances has impressed me many times, especially when listening to others with schizophrenia. To survive is a real accomplishment, one that not all of us can do. It's important that we survive to tell the tales and broaden the understanding of a baffling illness. I admit, I want to know the answers. Unlike Pam, I don't believe that this illness is purely biochemical, which is not to say I advocate not taking the anti-psychotic meds, they have saved me from a much worse fate. I believe in God (the "Visitors" call it "The Source" which makes more sense to me) and I believe the universe has many other sentient lives, some of whom are here affecting us. Who they are or where they came from I have no clue, but they are a part of my life. I can accept that now that much of the torture has ceased. Pam once wrote in her blog a while ago how important it is to appreciate the little things like a freshly made bed or a sunny day or a long overdue hot bath or just time well spent and I strongly agree with that. I have a lot to be grateful for and I am. It's the glass half full philosophy over the glass half empty.
Thanks Paula for being you,
Posted by: Kate K. at September 23, 2006 10:48 PM
At this point, I must speak to Kate. From your very first comment, I was impressed by your incedible erudition. I felt exactly the same way when I first began witing to Pam. I had no idea that either of you were schizophrenic at the time. Pam promptly told me, just as you have told Pam's readers, and your story, so similar to Pam's, has left me shaken and horrified that you have had to experience such misery in your life. Tears are running down my cheeks. My emotions are volcanic, and I have no control over them. I must say to you what I have often said to Pam, I thank you for sharing yourself with me and all of Pam's readers. You humble me beyond any words I am able to express. You, Pam, Joe, and so many others possess a strength that is impossible to define. All of you shine and shine and shine. Each of your words is a gift of supreme dignity and intelligence. I cannot commend you and all whom the Fates have dealt the cruelty of your illness highly enough. I cannot write anymore. I am too disconsolate right now.
With profound admiration, Paula
Posted by: Paula Kirkpatrick at September 23, 2006 09:09 PM
Okay, the continuation...The psychosis got bad enough that I had to leave school. I just couldn't concentrate on my classes. I was too caught up in the delusions and paranoia. Initially the psychosis was almost romantic, except for the fact that the lover never showed up and was uncomfortably eccentric. Then day by day I fell into this delusion of grandeur. First the voices said that I would be with this famous and rich man. Then they laid all this Christian imagery on me like I was going to be the Virgin Mother and this man would be a conduit for God. This was very strange to me. All I knew was that I was in something extraordinary. I didn't know what, but something was happening to me and I believed it was supernatural and alien in origin. And I did believe that I would someday be with this man. The first belief was and still is true to me and the second was a complete illusion.
But I believed that illusion for about three years. During that time I was told so many stories. The voices would go from one story to another: I was a holy woman, no, I was Jesus reincarnated as an abused woman, no, I was Satan, no, I was Kate sharing the same space with Satan. I would follow each story, but the worst was believing I was Satan. The voices said I had hurt everyone I'd ever known and would have to go to each one and apologize and that everyone would despise me. But I had trouble believing that I had committed some horrendous crime, especially since I had been an abused woman (and trust me, once in a lifetime would have been plenty in the punishment department). The voices ripped into me like a hurricane without an eye. All day and all night they were alert and active while I was desperate for comfort and sleep. The voices told me that this rock star was the head of a Gnostic cult. I thought some of the members of this cult were following me in cars, in stores, on the street. I thought my house and car were bugged and I began talking my head off thinking some "real" person was hearing me. It was joyful/painful ego tripping. I once wrote a song about someone else which said "You're so good/ You're so bad/ You're so the center/ Of your own head."(It sang better than it reads...) Well, that's how the voices made me feel. Dellusions of grandeur thrive in extremes.
One day the voices ordered me to fly to San Francisco. I forget why, probably to meet the singer, at least that was the lure. I booked a flight while I was out of my mind and somehow I got to the airport, driving an hour and a half to get there. For some unknown reason I was bumped up to first class (on the return ticket too). During the flight it was as if I was being split into three parts: Big Kate, Middle Kate and Little Kate. It was incredibly painful and I spent most of the six hour flight glued to the window with my eyes shut. When I arrived in San Francisco I didn't know where to go. A long time ago I had been there but the only place I remembered was Fisherman's Wharf, so I got a taxi and went there. I walked around for hours dazed and confused listening to the voices weaving delusion. I tried to find a hotel but they were all very expensive.
I found a hotel and called and reserved a room and then took a taxi there. I decided that I would leave the next day and go back home but in the interim the voices were pulling me apart and pushing me back together again. I got introduced to the three Kates. The Big Kate had moments of brilliance it seemed. Middle Kate was the one I identified with, not brilliant but a good woman, a bit damaged. Little Kate was the strangest one to me, innocent but incredibly funny, bizarre and playful. She (Me?) felt most alien to me, though I liked her. I needed the laughter that that part gave me. I managed to get home safely but I was very sick.
The next thing the voices ordered me to do was to call my ex-lover, which I did. They told me to tell him that I thought I was Jesus. I did that too. He said that I had just stopped him from committing suicide (besides being a paraplegic and an alcoholic he was also a heroin addict). He treatly me kindly and patiently. So I went up to see him. I was so psychotic, so scared, felt so alone and he was there for me in a way he wasn't before. But the voices didn't let up. I stayed over at his apartment but I don't think I slept. While he slept I was put in hell. I was told I would never see the ocean again, or paint and everyone would hate me. I was told I was evil and would be punished from now on. I remember being in my ex's kitchen with my ear to the floor and I knew for a while I was inside of hell. I was terrified, frozen, transfixed. I really thought they would keep me in that horrible place, but they didn't. I stayed the next day and Patrick (a pseudonym) got enough beer to get drunk on.
But as night approached and Patrick got more intoxicated, the voices got stronger and more insistent. Patrick said he had a gun in the apartment to ward off angry people (drug dealers?), but I got threatened. The voices became mensa-like telling what to do or not do, what to think. They told me to talk out loud to them, that Patrick would think I was crazy and pull away from me. I managed to leave somehow though I know he didn't want me to go.
Okay, getting sleepy again. More tomorrow. Thanks for reading.
Best Wishes to all of you,
Posted by: Kate K. at September 22, 2006 11:34 PM
I have always felt that the cruelest aspect of your illness were the malevolent voices which taunted you, ridiculed you, and most despicably, told you to hurt yourself. I cannot express the rage I feel when you are subjected to this, and you cannot believe that the voices are NOT real, they have NO power over you, and you should laugh at them with contempt.
This is the first time you have ever spoken of voices that are not abusive. I am truly taken aback by this knowledge. If you must hear voices, then certainly I would prefer those of your "little people". I still wish that the only sounds you ever heard were coming from a source in your environment, not from a source within your brain.
Posted by: Paula Kirkpatrick at September 21, 2006 03:26 PM
The story goes like this: I recently asked my mother why we stopped going to the Unitarian Church when I was little. She said one Sunday morning when I was around four years old, I lay down in front of the church doors and wouldn't get up. I refused to go in. The reason had nothing to do with a belief or disbelief in God, I was way too young for any of that. The reason was that after the sermon the little children were put in a room with each other and one or two adults without their families and the minister's daughter was a bully. I guess I just couldn't stand her. I guess because I have no recall of the incident. After that we didn't go back. My family didn't seem to miss it and I grew up without any religious training.
When I was twelve I got a pack of Tarot cards. They were magical and the closest I came to the supernatural while I was growing up. I began to believe in something greater than myself but I couldn't say exactly what. In college I minored in art history and began to be exposed to Christian art. This lead me to take a course on Christianity. I did not become a believer but was impressed with the
symbolism and beauty within the works. Then one day when I was around 26 I bought a book at the local bookstore called COMMUNION: A TRUE STORY by Whitley Strieber. It chronicled his experiences with beings he dubbed "The Visitors". (There was a movie made of this starring James Earl Jones) I found the story fascinating and frightening at the same time and by the end of it I was convinced that the author was being scrupulously honest. And I started to wonder about life outside of earth and what it could be like. I even reached out in my mind to "them" offering my aid in some small fashion. Then I put the idea on the back burner and resumed my often solitary life. It was around this time that I first began identifying something that was a part of my mind but separate, unidentified voices that would converse with me when I was troubled about something. I would talk aloud to them occassionally in my room. They were often evasive of direct questions and I didn't push them on it. I began to see them as friends and teachers. They were not invasive and they did not outright lie or judge me harshly and often I wasn't aware of them. I did begin to really believe that other beings not only exist somewhere, but exist somewhere here.
Then my parents retired to Florida and I moved six hours away from New York City to live near my older brother. I promptly got involved with a much younger man who turned out to be an abusive alcoholic. Some of what I went through with him was absolutely horrifying and yet I stayed with him for over five years. Occassionally I'd hear a voice. Sometimes they would soothe me after a particularly bad episode, but mostly I felt I was alone with the situation. Then I left him. The first year I mainly kept to myself, wrote a lot of songs and sang with heart. I was still paranoid about him following me. Then about a year and a half after I left him he sent me a letter. He wrote that he had been in a car accident and was paraplegic. I began to visit him at his sister's house. At the end of about five months of seeing him again, he became abusive again and I just shut him out. I couldn't go through it all again. I was going back to school for art and photography. I was starting over again...or so I thought. I had briefly gone to a therapist and told him about my voices. He didn't seem too concerned with them since they weren't hurting me. Soon he left for another job and I stopped getting counseling. I went back to school and had an excellent year.
That Spring after classes ended was when I became psychotic. The voices became more prevalent and they told me to send a tape of myself reading a poem, singing some songs and talking to the lead singer of a band I liked (I had a superficial crush on him). And so I did. Then one day a voice identified itself as "Darius" and told me this singer would fall in love with me through the tape, that we would meet and have a child together named "Christian". This was all despite the fact that I knew this singer was married and dedicated to his wife. I became paranoid that this singer had found out where I lived and sent people to watch me. Of course we never met and I spiralled downwards thinking I was chosen for something exceptional. But I felt deeply conflicted. I didn't want to be the reason for the end of a marriage and I thought this guy was really behaving badly, spying on me and not being upfront. After a couple of months of feeding off of delusions and suffering with paranoia the voices put me through an ordeal and told me I was telepathically connected to this singer, like we were joined at the head.
Sorry, I've taken my meds and am getting sleepy. Part 2 later.
Posted by: Kate K. at September 20, 2006 11:51 PM
I'm so sorry to hear of Joe's deteriorating condition. Sometimes life is so unfair! So, as it stands, each day is precious. Can Joe still read, write, listen to music or audiobooks, go for a walk? I hope so. Any pleasure that he can grab, he should and milk it for all it's worth. I hope you two can do something fun together to offset the seriousness of the situation. Do you play board games together or go to the movies? Does he like poetry too? If he does,you could read some out to him. Reading aloud does something to the words, makes them resonate with more meaning I think and this might soothe Joe.
The "little people" sound interesting and I'm glad that they entertain you and cause no harm. There are some strange perks for us psychotics...I'd like to tell you my story, but can't right now. I'll try later on tonight,
Kate :) to Pam BD
Posted by: Kate K. at September 20, 2006 07:20 PM