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...to tell me what YOU would like to have me write about here. I seem to be batting 0 these days, judging from the number of comments, so if people will suggest subjects they want to know more about, I promise to consider them in writing my blog entries. This would help me a lot in another way as I am feeling kind of written out. I don't mean writer's block, no, but in the sense that I can't think of what more to say about schizophrenia except to chronicle my daily life which would be horribly boring for all concerned.
But Readers, please, I know there are a lot of you out there who never comment...Why don't you do so this once, even anonymously, because I just know you have ideas for me that would spark some great entries that others would love to hear about! Regulars, of course, I love your loyal comments and welcome any suggestions you may have at any time. Warning: If I don't get suggestions, I will write about Joe and ALS to my heart's content and assume that since no one responded to my request you don't care one way or another.
Later: I see that some comments have come in to earlier entries since I last looked, and they were very insightful, but my request still stands, as I need the input, I really do. Thanks everybody! BD
This first Q and A comes from a series of questions my father asked me in an exchange of emails recently. All the "answers" have been edited, rewritten and polished for clarity's sake.
Can you explain to me again the difference between a delusion and an hallucination?
Delusion: a false belief --"I am Satan and make everyone around me sicken and die." May arise because of a hallucination...or simply arise of its own accord. That's how the delusion I described below in “Hospital Stay” arose, simply from that nurse not saying Hi properly. (I wrote it down in my notebook as it was happening and the Hustler stuff started immediately after the “Hnh” don’t-bother-me greeting)
Hallucination: a false perception -- hearing voices when no one is speaking (the most common hallucination) or seeing things that aren't there. For instance, I knew that dogs and Christmas trees should not be popping up in front of me even as I swerved to avoid them. On the other hand, I was mostly curious as to why Alan Arkin and Joe Lieberman were in Nazi uniforms supervising a conveyor belt going to crematorium ovens in the wall. They also may be tactile, olfactory or gustatory. An example: After ECT for months everything smelled like burnt rubber, so I couldn't eat anything but tomatoes and apples, and pasta with tomato sauce on it, unless I took Depakote. Then there was gustatory, when water, plain old selzer water that I loved, tasted like penicillin for months.
(in a later e-mail)
Here's a better more precise definition of delusion, since while it is a 'false belief' not all 'false beliefs' are delusional: an irrational false belief held with certainty against reason and proofs to the contrary.
Hallucination is even more difficult. It is a ‘false perception’, yes, but not all false perceptions are hallucinations; they can be illusions, misperceptions, optical illusions, distortions and so forth. I suppose you could say something qualifies as an hallucination if it is a false perception, or stimulation of one of the five senses, with no known reasonable source or other explanation and presumed to be generated by the person’s own brain.
What brings so much credibility to the phenomena?
Geeze, that stumps me. I really do not know the answer. Part of it is simply the fact that certainty is part of its being a delusion or hallucination. The brain's misfiring gives you the feeling of absolute certainty that XYZ is happening, or that such and such is real. That's what L says at any rate. Dr O says that the feeling the misfiring sparks may be fear, say, and then the brain constructs a scenario around that fear to explain it, a scenario that is built from our own psyches according to our own feelings and real fears, or according to what she calls the antidote to fear, which might be power if fear makes us powerless. I think she says it is so credible because the brain is credible by definition and what it creates it believes. I’m not sure, really.
Why do you obey the command hallucinations and delusions?
It's really hard to explain, except that the feeling certain they are real is part of the whole experience. And what could happen if I didn't obey is felt certain to be somehow much worse than the consequences of doing so. I think if you weren't certain it was real, a belief would be halfway to not being a delusion anymore. However, I could give an example where rationally something I know, or am supposed to know, is true, but when push comes to shove I still behave in that situation under the very same delusion I argued was "just a delusion..." The situation I’m talking about here is the grocery store and shopping, which I find excruciating because I feel people looking at me and watching and commenting on what I buy and making me buy things I neither want nor can use. I realize this is both delusion and hallucination at this moment. But when I walk into Stop and Shop, all that knowledge falls by the wayside and I go right into protective mode, preparing for the battle to come.
So does knowledge that something is delusional really make you un-deluded? I don't know. You have to believe what you know, I suppose. And in some areas I haven't come that far. But I'm growing and changing in other areas a little every day, so all in all things are pretty balanced. BD (in case you don’t know, that’s a smiley face with glasses - me!)
The reality test I described below consisted of challenging a delusion or hallucination by asking someone a question like “Did you say such and such?” or “Did xyz actually happen?” or “Is xyz doing such and such in the walls?” etc then listening to the answer and trusting that the answer is the truth. Until I learned it, and could do it fully, including the trust part, I had had no idea that I was living in something other than consensual reality. Even though people told me again and again I was paranoid and delusional, I figured they were using such words just to insult me because they didn’t like me, because they had hated me from the minute they met me anyway. But at the instant that that horrendously frightening delusion dissolved in the light of reality, it became clear to me how much time I’d been spending in a wholly fictional world and how often I’d need to use that reality test: in three words -- all the time.
Lack of insight. That was the fundamental difficulty. I didn’t know that I had a problem. The reality test gave me insight, but it took me a four-week hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I only found insight by using it. Perhaps it is different for each individual. If you or your loved one can’t understand that there is a problem, don’t force it, it will not do any good: one can’t see colors if one’s eyes have no cones. What you can do is find a way to have them agree to take medication anyway -- as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I decided to force myself to take them and started doing so in the hospital, where I’d been refusing several. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I didn’t refuse medication even once.
Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree with it, I admit, where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances. I understand that some people with schizophrenia will be horrified by this suggestion, but I’ve been around, done things that I wish I hadn’t done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off the medication about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. Until now.
Now I’m on 15mg of Abilify, plus some Haldol and a full dose of Geodon. Three antipsychotics. They seem to work well. I still hate the Haldol, and feel it is still unnecessary. But I take it, supervised by a morning and evening visiting nurse. But with the Abilify and Geodon, boy, what a transformation. They aren’t like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.
Now, though, ah, now I write like wild fire. I write and write -- pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like a electro-chemical river from my brain down through my fingers and pour out into the world!
So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It’s what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they’d but surrender a tiny bit of “freedom” and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been made lightly, to work with the person to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.
There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to "get" the reality test? The stakes are high, the stakes are high.
Dr M told me a few days later that he’d put me on CO to prevent me from acting rashly, angrily hurting myself because he had kept me there. “Was I right to do so?” he asked. I looked near his face. Actually, no, I told him. No. Not for that reason.
I do not hurt myself out of anger or for revenge or to get back at other people. That would be silly. Why hurt myself when it’s other people who are in the wrong? That’s what I should have said, but he didn’t ask and I didn’t think to elaborate. I only hurt myself to atone for evil I have committed or because of command hallucinations, or both really. I have figured out that all this arises as a delusion with hallucinations – a realization I have to keep reminding myself of so I don’t fall back into the delusion – from the fundamental fact that I despise myself. The voices are my brain, me, telling myself I’m a lazy fat sh--. That I should die, that I should maim and disfigure myself, that I deserve to put cigarettes out on my own face (which I did, several times) and so forth. It is not invisible other people controlling me, it’s fundamentally ME telling myself to do those things. Why would I want me to hurt myself so grotesquely unless I hated myself? But I digress.
Sunday night, I was still on CO. The evening sitter left at 11pm and was replaced by Speare, a regular daytime PT who sometimes picked up extra money by working this well-paid overtime. I’d always had trouble with Speare, largely because his name scared me. But recently I’d thawed, because he alone among the staff deigned to call me by my alias, the undercover name I was going by in the hospital so certain people would not find out I was there.
“Hi, Speare,” I said, warmly.
He barely glanced up, only grunted peremptorily, “Hnh.” The message, I knew, was: Don’t bother me. I’m sitting here but I don’t care to talk. I just want to read my magazines and get through this long boring night somehow.”
David, another PT I really liked came by just then and glanced at the magazine Speare had pulled from his briefcase. “Girls?” he said, sotto voce. “Oh. Hustler. You read Hustler, Speare? Gotta have something to stay awake with during the night shift, right?” He gave a chuckle and continued down the hall, doing checks.
Hustler?! Speare is reading Hustler while he sits and watches a female patient all night? That’s not right. What is he going to do? Deliberately give himself sexual fantasies while I sleep, that’s what!
Wrong, wrong, wrong! For once the voices were right on the greenbacks. Clearly they were scared too.
I planned to remain awake, as I usually did, but this time completely on alert, watching Speare’s every move, until midnight. That was when JS the night nurse, gave me the medication I took for sleep. When she came in with it, I was going to tell. What choice did I have?
At 10:00 or so, something else happened that if anything confirmed my fears. A young woman, whose depression was related to pregnancy hormones and who was leaving in the morning after only a couple of days, came up to Speare as he read. Quickly he closed the magazine and dropped it by his side, picked up another.
The young woman spoke in a low voice, but glanced at me from time to time, and said, “We’re really uncomfortable with your reading Hustler magazine while you’re sitting there watching her. Will you please put it away?”
Speare darkened but nodded and mumbled something I couldn’t hear. The young woman seemed satisfied, because she walked away, her mission accomplished. When she did, Speare continued to read the other material, and I was relieved to see that he didn’t touch the Hustler once up through midnight.
JS bustled in with the small dose cup that held medicine diluted with apple juice. “It’s pretty full, sorry. Be careful you don’t spill.”
I drank it in one swallow. Still no taste, though I knew it was supposed to be foul. The antibiotics still hadn’t restored my sense of taste, which Lyme had stolen...JS was still standing there. I asked if I could talk to her immediately rather than at 1:00a.m. as it was really urgent and I would be asleep by 1:00 tonight.
“Sure, Sweetie, let me pull up a chair.”
Frantically, I gestured her closer. “I need to talk to you alone, without Speare hearing me...”
“Oh, okay, that’s easy enough. Hey, Speare – “ she called. “Pam and I are going to chitchat for ten minutes or so, if you want to get a cup of coffee or something, feel free.”
Speare got to his feet eagerly. He left carrying his magazines and briefcase, but what he was actively reading remained, open on the table.
I told JS what had happened and what I heard and saw.
“Speare? Hustler? That’s incredible. Completely unethical of course, but are you sure?”
“I heard it and saw it with my own two eyes. Plus, so did that pregnant girl. She goes to bed late. Ask her. Ask D what he said to Speare. Though he’ll probably lie to save Speare’s job, I dunno. Go see what he’s reading now.”
She looked and came back to sit down. "Only 'The Daily News'. But that proves nothing, I suppose. Well, I’ll check it out.”
“Just don’t ask Speare until you do, and don’t, please don’t, let Speare know I told you. He’ll probably guess anyway, and then he’ll – Never mind.” What I was going to say was that I was afraid he would get my address from my chart, know where I live and come up to find and kill me. I was going to live in fear of it anyway.
I got through the night, half awake and half asleep because I went to sleep trying to watch Speare, and as I watched, everything he did confirmed my suspicions. Everything I heard did too. When morning came, I had all the evidence I needed to convict him, what I needed now was another witness. And she was going home today-- Oh no!
I flew to the dayroom to see if she was eating breakfast and to my great relief found her immediately, sitting alone at a table opposite the door. I never spoke to any of the patients, and had never spoken to her, but fear gave me the courage to do so now. I walked directly up to her table and looked at her, not just near her, and said, “Would you mind if I asked you a question? It’s not personal or anything.”
“No, not at all.”
“It just has to do with last night, with Speare, I mean, do you remember what you went to-- I-- the thing is I saw and heard something-- no, can you just tell me what you said to Speare last night when you went up to him around 10pm? It’s really important...”
“Oh that? We just told him that there was a big mess in the kitchen and since we were the last ones out of the dayroom we didn’t want to be blamed for making it, because we had nothing to do with it. That was all. He didn’t seem to care. So we left.”
“That’s all it was about? A mess in the kitchen, nothing more?”
“Nothing. Why? What did you think it was about?”
I didn’t answer her, just spoke to myself and the air. “Oh god, I can’t believe I was so wrong, and about everything. I “knew” I was right. I believed everything was real...and none of it was. None of it was real.” The delusion and its accompanying hallucinations dissolved with that one test of reality, coupled with the simple trust that she'd told the truth. That's all it took, asking a question and trusting the answer.
That's when my recovery finally began. The sitter and I headed back to my room.
I refused breakfast this time and waited and waited for Dr M. Nurses and psych techs (PTs) passing my door kept making snide remarks and laughing at me, so I slammed the door shut.
Someone knocked and nurse S, the head of the Plan, came in. "Are you slamming doors again, Pam? Don't you want to go home? Don't do it again."
"I just closed it a bit too forcefully..." I mumbled and lay down, trembling, my back to her. I heard her pull the door shut as she left. Thank god for small blessings.
It was 11:30am before Dr M arrived. I expected him to stand and briefly ask a few questions and pronounce me discharged, that's the way it usually went. Instead, he took his usual seat at the end of the bed. "How are you today, Pam?"
I looked at the air near him and could tell he was being snide, laughing at me beneath his oh-so-calm demeanor and I'd had it. "Don't give me that, 'How are you today, Pam'! I know what's going on, I know about The Plan, I know you're in on it with all the others. So quit all the BS."
"I'm afraid I don't know what you're talking about."
"You do, I know you do. You and all the staff. The Plan, the Training Plan, the Game that you're putting me through. That Plan. You know perfectly well what I'm talking about. You're just dancing the Dance right now and we both know it. Don't think you're fooling me!"
He tipped his head downward as if to look at me over his glasses. "Pam, what is this plan, this game or dance you're talking about? I honestly haven't heard about any plan or game..."
"Oh, go on, continue playing with me if you want to, but I know when I'm in danger from all of you, and I'm glad to be going home because there I'm finally safe -- from you, from them, from all of the staff and patients who have made my life hell here. Everyone denies it, and everyone knows all about it. You're all lying."
"What is this game? Can you tell me what the game is, what we are doing?"
"Why should I tell you, when you're the one running it, you know what you're doing perfectly well. you know more than I do!"
"I honestly have no idea--"
I had no more to say. Scared though I was to go home, I was sick of the place, all the people laughing and making fun of me, even the TV programmed to mention me by name, I needed to go home to recover from being here!
Dr M sat in silence a moment, then slapped his knees and as he got to his feet said, "I can't let you go home."
"What?! I've got to, I've got to get to Lynn's 80th birthday party! I promised her! I've got to go home!"
"I can't send you home, I'm sorry, you're too delusional." He was moving out of the room.
I was desperate. "PLEASE! PLEASE! I've got to go home! I'm not safe here. I'm safe at home!"
"I'm sorry." With that, he was gone. I was about to run after him to emphasize the fact that I was not a danger to myself or others and that he couldn't keep me here, I'd sign out AMA on Saturday when my PEC, the 15 day commitment paper, signed 8 days into my stay, expired, when there was a commotion in the hall. Suddenly two men, two PTs appeared in my door. K came in.
He took hold of one of the three chairs in the room. "You okay, Pam?" he asked.
I nodded, afraid to say anything now.
"Mind if I take this?" He dragged the chair out of the room and I figured he needed it for another, but he just put it outside my door and sat down. I frowned. What was he doing there? I wasn't --Wait just a godammed minute!
I ran out to the nurses station. Several staff members were gathered there, staring at me. I looked around wildly for someone, anyone I trusted, and found C. "What's going on? What's that man doing there?!"
"Dr M put you on CO, Pam."
"WHAT?! Let me talk to him, call him out here, I want to talk to him!"
"Pam, let's go to your room. He won't come out. He's already written the orders. Come on, let's go talk in your room, your yelling is scaring the other patients."
I stomped back into the room, humiliated to find K following close behind. I tried to slam the door, but he caught it and gently pushed it back against the wall. "Pam," he chided, "you know how it works, don't give me a hard time."
C came in then, with M the social worker and told me that Dr M, usually unflappable, had left my room and strode to the nurses station, seeming unnerved, and immediately ordered CO. "Did you threaten to kill yourself?"
"NO! I'm unsafe here, but because of YOU, not because of me!"
"Because of us? Why us?"
"Oh, never mind. I told Dr M and look at the trouble it's gotten me in."
The social worker put her two cents in. "You must have said something that worried him, Pam. Dr M doesn't put someone on CO for no reason."
"I said nothing to justify it. Nothing! I don't know why he did it. I told him I was safe at home, and unsafe here, but not from myself."
They couldn't figure it out but Dr M was adamant and I stayed on CO, as it turned out, all weekend and longer. What the nurses and social worker didn't know, nor Dr M, was that I had been collecting "weapons", anything with a sharp edge or that could be broken to create one, in order to finish the job I felt I'd not done well enough the first time...So CO made sense, though not for any reason Dr M knew about. It may well have prevented another Incident in fact, because by the end of the weekend things had changed so radically that I admitted to Dr M on Monday that I had these implements and handed them in, having decided not to go through with it.
(To be continued)
...At least I think Dr M is "older," whatever that means. I think he is, well, older than I, but in fact, since I rarely if ever looked at anyone in the hospital (though I screamed and swore at many) and have trouble doing so now, I actually have no idea what he looks like. For all I know he is younger than I and merely has a voice that sounds "old".
Be that as it may, most of the time the regular assigned doctors are rushed and their visits on the unit are notoriously brief, five minutes being considered a long time to spend with one of them. Most "sessions" are less than that and some what I'd call "drive-by." I don't know whether Dr M tended towards the longer visit or not but tops was five or six minutes, or had been for me.
Dr O, who is in private practice as a psychiatrist but also works in the Sleep Disorders Center at the hospital, is not one of the regular doctors, but obtains special admitting privileges when she needs to have a patient of hers hospitalized. At least she does that when I do, presumably with others as well...But she also spends much more time seeing me than the regular psychiatrists do, a half hour to an hour usually, 5 or 6 days a week, and it is above and beyond the call of duty. She did that kind of thing -- stay and talk, if not for a half hour, then ten to fifteen minutes at least -- with all her patients when she worked at the clinic and was an admitting doctor on the floor.
But this time, unlike the first time Dr M covered for Dr O, it was different, and I don't know why. I was lying in bed in the middle of the day, a Wednesday, doing nothing as I did most days, most of the time. I was finally off CO for a change, The Incident having taken place about ten days before. After Dr M knocked, came in and introduced himself, he actually sat down on the other end of my bed, rather than stand, poised to leave. He asked a whole laundry list of questions that I answered as honestly as I could, trying to trust that he, unlike all the other staff, might be on my side.
"Hmm, you're still pretty symptomatic," he said. "Do you think your medication is working?"
I was thinking only about medicine I'd been given for a relapse of neurological Lyme disease, which I believed caused the entire episode, start to finish; most certainly it exacerbated it. "The antibiotics? I don't know. I just started them. I have to wait a few more days."
I sensed a frown as he wrote something on his pad. (I think we argued a little about whether I was there for Lyme or for "a psychiatric illness"; I really don't remember, and it's not in my notebook.) When he got up to leave, he said, "Is there anything you'd like to ask me?"
I said no.
"Is there anything you want to tell me?"
I thought a moment, but came up with nothing. I shook my head.
"Good. I will see you earlier in the day tomorrow." He strode briskly from the room.
I realized with some amazement that he had just spent at least fifteen minutes talking with me. Unheard of. I wasn't sure if it was good or bad.
Not good, not good! screamed someone. You're a piece of sh--, you're poison. He's in with all of Them. Don't you know anything?
The next day when Dr M came, I was lying down again, but quickly pulled myself to a sitting position against the back of the bed, knees up defensively. Today was different. The evening before I'd come to "understand" that there was a Plan, a Game being played out here, staff against me, cat and mouse. I had a test to see if Dr M was part of it. The test was to answer The Questions correctly, as opposed to honestly, ie if the question was, Do you hear voices? to say, No, I never hear voices. On Wednesday, I'd said, honestly, quite the opposite. So today, if he accepted my answer, I'd know for sure he was in the Game against me and know it was time to get out of there, but quick before anything happened to me.
Well, he started with almost the same question at the day before: How are you? Then, I'd said I didn't feel much better than I had when I came in, though at least I had stopped screaming. Today I said only "Fine", the social response. He didn't raise an eyebrow or question this, simply wrote it down as if I truly meant it. How do you sleep? Now, I always sleep very very soundly, due to my narcolepsy medication, and have trouble if awakened too early as I emphasized Wednesday. Today I said something like, "So so. Not too bad." He wrote it down. Ditto all my "correct" answers, however vast the difference from Wednesday, only one day earlier. I didn't hear voices; never saw things in my life. The correct answers were obvious, this was not a diagnostic interview after all. You were presumed to know what you suffered from and be familiar with the laundry list!
Still, I expected him to detect my lies and know I was testing him and I hoped he would prove he was not in The Game or Plan. No such luck. Well, one thing was clear: I had to get out of there, no matter how I felt. It was no longer safe, if it ever had been.
The evening before, my fears had been confirmed about the staff. At Wrap Up I had come out and spoken openly. "I know you have The Plan," I said, with some hostility. "You've had it ever since I came. What I want to know is, how many are in on it?"
The staff member leading the meeting looked at me with surprise, faked of course. "We're all in it, Pam. We're a team and we work together on a plan for your care."
"So you admit it! The Plan is real! And everyone is in on it, even the patients?"
"No, why would other patients be involved? It's a plan for you alone..."
"I see. That's what I thought. What about their-- Oh never mind. You've already answered the important question, though I wish you hadn't said what you said."
Now it was Thursday and even Dr M had shown himself to be a cat, in on the Plan, playing the Game.
I shook off my feelings of dread and turned my mind to finding a way out of there.
Apparently we were thinking along the same lines, because when I asked if I could be discharged by Saturday, he told me that weekend discharges were rare, why not tomorrow, Friday?
"Sure!" I pretended to exult. Inside I trembled, wondering how I was going to be able to manage "on the outside" yet knowing I wouldn't be safe here, where The Game would have to come to fruition.
Dr M was already on his way out the door by this time and said as he left, "I'll see you tomorrow and make my final decision, but I think you can plan on it and call your sister. I'll speak to Dr O tonight and see what she thinks."
I'd eaten very little for most of my stay, having lost my sense of taste, due to the recurring Lyme infection and that night I refused my supper tray altogether, telling the psych tech handing them out that I needed to pack, I was going home tomorrow and would eat there. In truth, there was little to pack. Though I'd been there three weeks, I came in with only two small book bags, one holding clothes, the other notebooks, pens, a book and toiletries. I had only two large collages that I'd made on CO to add to that now. I put the bags against the wall, full, then lay on my bed and thought about what was going on-- the Game and how Dr M had turned out to play a part in it.
It made me furious that they had planned it all along, The Game Plan, and that they had maliciously sent messages to me and set traps for me throughout my stay...Not trying to help me, always trying to hurt me, laughing at me and mocking me. I knew they did this. I heard them doing so all the time! In fact, they enlisted the patients, to whom I never spoke, in this effort as well, so that everyone was talking about me, and laughing and making fun of me and my symptoms, the Lyme disease they didn't believe I had, every minute of the day. Even the TV made reference to me...
I stewed until the nighttime medication put me to sleep and was still in a silent fury, when I awoke.
(to be continued)
If I painted a bleak picture of ALS, the true picture is perhaps bleaker: Most ALS patients never need a nursing home. At first glance this statement seems hopeful and positive, until I ask you to think about its implications, knowing that ALS is a terminal illness. Yes, that's right. Most patients die before they need a nursing home. The truth is, most patients die before they need a lot of things. The brother of a friend of mine stopped being able to breathe while he could still talk, though his speech was garbled, and could still walk, though with braces. Living on a vent costs a great deal of money, it necessitates a 24 hour private duty nurse for one thing. Christopher Reeve had his millions and made it seem easy. But how many of us can afford it, let alone emotionally tolerate "being breathed" even as our bodies die slowly day by day and we are reduced to a mind and senses! In fact, most people with ALS opt to die, once their breathing is compromised. It looks like death can usually be slow and painfree, a going to sleep and dying then. I am not sure, I'll have to read more. I asked my pm visiting nurse and she thought that unless the diaphagm gave out suddenly, one would get slowly hypoxic -- suffer from a lack of oxygen -- and gradually go unconscious before dying.
I cried myself to sleep last night. I am aware that it is Joe's tongue that was the first muscle affected, the one most affected now. In the back of the throat, the tongue is huge, relatively speaking, and once it goes completely, I think he could die if it collapsed down his throat and blocked his airway. I don't know if they can prevent this -- by pinning it forward or something beforehand...How I shudder to think of him suddenly suffocating. I hope to God it can somehow be gradual and peaceful, but I am fearful that it won't, that he will die frightened for the first time in his adult life. And that I won't be there to hold his hand.
It's hard for me to write about myself right now but I realize this is a blog about schizophrenia and that that is what people come here to read about, so I will try to tell you a bit about my recent hospital stay.
I was admitted primarily for safety reasons, because I was psychotic and hearing command hallucinations telling me to set myself on fire. My father had cancer, which I, as Satan, had caused, as I had always warned everyone I would. Don't come near me, I'd said. If you do, you'll be poisoned, you'll get sick, you'll die...And now look what happened!
I was gathering the implements and materials to burn myself when I remembered what Lynnie, my psychiatrist twin, had told me: such an act would not just disfigure me, which was my aim -- since I was Satan, I had to atone, people had to be warned to stay away. No, it would kill me, which was not my aim. I knew I would have to continue if not physically prevented. I called someone, I can't remember who, and that person called Dr O. She wanted me hospitalized immediately. She arranged a bed at the hospital near Lynnie who drove 60 miles just to pick me up. Joe (this was before his diagnosis, when we still thought he would be okay) stayed with me until she arrived. He was his usual happy rational self, despite his own schizophrenia, and tried to talk me out of my beliefs about myself. I would have nothing to do with his "opinion" that I could not be Satan. He was simply wrong, and time would prove how.
By the time I was admitted at 1:00 am I was mute. I had started wearing sunglasses over my regular glasses so that no one could see my eyes and read my mind or control my thoughts and I kept them on now. I never took them off for the entire month I was there, except when writing in my notebook. The first three days, I wouldn't speak to anyone. I wrote answers to questions people asked me or when Dr O and I spoke. But I took notes on everything, trying to figure out what was "going on." Everything seemed to be a plot of some kind, a conspiracy to do something nefarious or laden with ill will toward me. In fact, from the first minute I was there I felt hated and abused, and was certain that the nursing staff was "out to get me" in a concerted way.
I wrote about "Their plotting" and "They want revenge against me" so often in my notebook it is tiresome to read, except that it gives me some insight now as to how paranoid I was at the time about everything and everyone. I was on CO -- constant observation -- most of the time I was there, up until the second to last day. During the one period Dr O felt it was safe to take me off CO, I did something terrible.
I thought I had "told" her, by means of various hints (the best I could do, since I wasn't allowed, by the Rules, to tell her openly) what I planned...if the command came. It seems I didn't tell her enough because she didn't ask the right question. She didn't figure out what was coming and I was left to wonder what that meant. The command came. Right before Goals Group.
You were supposed to tell the Goals Group and staff member the goal you wanted to accomplish that day and then at the end of the day, at Wrap Up, tell how you fared. I never sat in the circle, but outside it, at a table behind, with my notebook and a pen. I went last. My goal that day was, "Try not to commit suicide." The group leader, who had asked everyone else penetrating questions about their goals, asked me only, "Have you anything else to add?" To such an open-ended question I could only answer, "No." With that, group ended. I was first out the door.
I went immediately to the desk at the nurses station and asked for my foundation make-up, which had been taken away because it had a mirror in it. Certain "sharps" items like that could be used but had to be returned afterwards. They gave it to me without questioning. Quickly, I walked to my room, a double that had been made a single because I had been so often on CO and had had the room cleared twice, a mattress on the floor my only furniture for several days. I shut the door and went into the bathroom, knowing I had 15 minutes before a tech or nurse came by on checks. I opened the compact and managed to pry off the mirror. Using all my strength I broke it.
Yes, I did what you all know I did...
The end of the story is that there were stitches and CO again and Dr O furious at me for breaking a contract that I'd forgotten all about in the boil of the moment and never did remember. It wasn't the only time I made her furious either...Eventually, she went on vacation and a different doctor appeared in the doorway, Dr M, a tall older man I'd seen before when Dr O went away.
(To be continued)
...of mostly hell and a final week when I learned a great deal I didn't understand before, not even while writing DIVIDED MINDS, for all its seeming eloquence to the contrary -- about psychosis, about paranoia, about Reality Testing (that one was hard), about trust and trusting people to be honest and aboveboard (even harder, and truth to tell, I'm not there yet) about speaking clearly and openly, not obliquely, only hinting at a truth I assume people will intuit or guess, somehow reading my mind -- after a month of all that, I'm home again, though 14 pounds lighter and a great deal weaker and sadder (and yes, Paula, Lyme-ridden!).
I'm sadder for complicated reasons, partly because I just don't feel as well as I usually do upon discharge from the hospital, not, for instance, the way I did a year and a half ago. But mostly I'm sad because during the month I was in the hospital I was told that Joe, my wonderful, completely tolerant best friend (and friend to many others) who has stood right there with me for 20 years, through gruel and stew and despite my rages, irritability and all too frequent rejections, a truly good man of going on 51 years, has ALS, amyotrophic lateral sclerosis, or as it is otherwise known, Lou Gehrig's Disease.
Joe will die of the disease. Most likely he will not become the one in ten million Stephen Hawkings who manage actually to survive (no one knows how...) though his optimism keeps alive that hope. But worse, before he dies, he will become progressively disabled as his motor neurons die and virtually all his voluntary muscles disconnect from his brain. He will lose the ability to speak, probably first, because it seems to be the first capacity that has been affected. He will eventually lose the ability to walk or even move his arms or fingers or even his diaphagm, so that even breathing will become impossible without a ventilator. Luckily, I have discovered through my reading that the muscles of the eyes (and bladder) are often unaffected, which is a blessing as we can only see moving things and so our eyes flicker about constantly in order to "make" things move. If his stare were to become fixed and unblinking, Joe would become functionally blind to his surroundings, unless they could be made to move, by means of a randomly R-L rotating wheelchair or bed or something that literally created changing movement.
The biggest worry, though, at this time, since he already has trouble swallowing liquids, is that he will aspirate something -- accidentally get liquid into his lungs -- and develop a pneumonia that kills him. In some ways it might be merciful, but I don't want to lose him, not yet, not while he has so many functions still intact and is not suffering in any way that I know of. He tells me of constant twitches and his speaking difficulties are evident, but other than that, nothing is visibly wrong.
Shortly before I was hospitalized, Joe came to a session with me and the esteemed Dr O and during that time I managed to tell him, or she did, that one of the problems between us, for me, was that he had opinions about things, his own wants and desires, but that he never expressed them. Joe admitted he was afraid of controversy and wanted only to be a good guy, the one who was agreeable and didn't argue with anyone. But he made a promise to be honest with me and try to tell me what he thought, felt and wanted, since I had made that request and he wanted to honor it. He's now doing it in spades and it is amazing to see this man's mind at work. Joe who thinks of himself as an engineering nerd, thinks of himself that way, doesn't understand how kind and truly loving his all-accepting attitude is -- towards his friends, other people, the world, even towards his illnesses (he also suffers, relatively mildly, from paranoid schizophrenia and possibly Aspergers Syndrome) and towards his fate...Name it and he'll have a good word to say about it and the reason why.
Joe is facing his early death with a great deal of respect, I think, for what life has given him and for its all being over. He is also dipping way down into a source of the dignity that we all hope for but cannot always find in ourselves when facing the Ultimate; we cry and scream and beg of God, WHY ME???? Joe mostly smiles. His grin is impish and cherubic, the way it always has been.
It isn't that he is happy to have ALS (suicide wouldn't occur to Joe in ten million years) though the illness is a new adventure and project for him to pursue, so much as that he is too happy a person not to be happy even now. He is also planning ahead, for the time when he will need a wheel chair, will need a motorized wheelchair, will need a personal care attendant, a nursing home, even a funeral...But he can make gentle jokes about it all and truly not seem upset. He seems to have come through some hardening flame, because he now tells me how he thinks and what he wants and tries to be open with me, even when he disagrees. But I find his true beliefs -- about the goodness of people, the human need for work, the inhumanity of a system that essentially forces the mentally ill permanently out of the job market -- to be so fresh and astonishing that I simply want to listen, not argue!
He himself is and always has been an engineer at heart, not a "mental patient" despite that designation by the System. He was condemned to idleness by the financial and job-related need for disability status at a time when there was no ADA. But had there been, there's no way Joe wouldn't have fought to go back to work as soon as possible. He has always wanted to, and had quite impressive jobs up until the time he became ill, so there was every expectation that he could have worked just as before, once on effective medication. Luckily for Joe, Trilafon controlled his symptoms and Zyprexa did that even better, also helping his communication skills, both without intolerable side effects. He says he could have worked and would have worked, if he'd just had a little help getting back and had been able to remain on disability until his income could provide enough to cover medication and illness-related expenses that Medicare and Medicaid now paid, provided he didn't work.
Joe now spends his time trying to research ALS, inventing when he has any free time, but mostly visiting with the friends and relatives who apparently have been "coming out of the woodwork" with offers to help, touched by Joe's faithfulness over the years. I've tried to help, researching what he can't because of all the visits he feels obliged to do, though my attention span is very short right now and reading difficult...
It's going to be a hard slog, getting through ALS, it's going to be difficult and sad, but with Joe it will also be funny and optimistic and plain old happy, because that is just the way he is. I won't say that the guy is a saint; that's a cliche and tantamount to a condemnation. But when Joe grins these days? Man-- he gives off light.