To Feel, or Not to Feel, That is the Question

I talk a lot about what I experience, I talk a lot about what I think, I don’t like to talk about how I feel so much. But I know that talking about the emotional impact of mental illness makes it a bit more personal, it is simply easier to relate to how a person feels, as opposed to what they think.

So I am going to see if I can write a bit about how I feel, but I know it won’t be easy.

Living with mental illness is a short hand way to way to say that someone’s emotional state is a hot mess. It truly is. Often I withdraw from my emotional state and try to live my life in a more detached fashion. It is easier than poking around at my feelings.

I feel like living with schizophrenia is a lot like living with a dysfunctional parent: you love it, you hate it, you cover it up as best you can, and you clean up a lot of messes. But first and foremost, you feel shame. Often I feel ashamed that I am not strong enough to beat this on my own. Often I feel judged by invisible others-I feel like they find me lazy, like they find me weak, like they find that I do not try hard enough-I feel deeply ashamed when facing this invisible jury. So before any other feeling, there is this feeling of overwhelming shame.

Feelings are different from reality
The illness feels much bigger than me.

Following close behind the shame comes the love, and its shadow, the hate. There are parts of me that truly love the schizophrenia. When everything becomes too much, schizophrenia swoops down upon me like my guardian angel; it swirls me in its hallucinatory robes and hides the things I can not cope with. And I know that I should not love the schizophrenia for that. I know that it would be better to deal with reality instead of checking out and trying to put my reality back together later. But I still love when my illness saves me from the reality that is often too much. But I hate my illness for the very reasons that I love it. That’s why I think it is like a dysfunctional parent.

I hate my illness when I feel like I have a grip on something, and it inexorably pushes me under. I hate my illness when I fight with it, but can not struggle free. I hate my illness when I gasp and choke and can barely draw breath. I hate my illness when I want to do something, but it dictates that I must stay in a darkened room huddled on the bed. I hate my illness when I realize in how much of my life that it dictates I be a non-participant. In other words I love my life, I hate my life, and I am deeply ashamed of my life.

This is hard to write. I do not feel good about living with the stigma of mental illness, it makes me feel unworthy of any good things in my life. I feel that being sick renders me unlovable. I fear…oh how I fear, I fear, I fear. I fear that I will lose the esteem of those who I want to think well of me. I fear that I will never wander free of this illness. I fear that people fear me, are afraid that I might become violent, I fear that I and my illness are socially unwelcome. I fear that writing my truth will stigmatize me further, I fear that writing my truth will isolate me more. I fear that writing about my schizophrenia will somehow fuel its fire, and that it will grow stronger.

Mostly, though, I try to live cut off from my own heart, and that might be the worst of it all. I do my best to keep my heart sealed away from myself and everyone else. I do not trust myself to love properly. I am guarded, untrusting and untrustworthy. My heart is an abused dog cringing in the corner of its kennel, it does not come out of the corner for threats or kindness, it bides its time awaiting euthanasia. My illness and my emotional unease around my illness have essentially killed my heart. I deeply regret that, for I did believe that it was the finest part of me.

The strongest criticisms I have faced in recent memory are that I am too guarded, too secretive, that I do not open up. Those criticisms were offered very gently, very kindly. And they are all true. The people who offered those criticisms were trying to help me and my heart take a step out of the corner. But my truth is valid too. My truth dictates that rolling around in madness and mire should not be a price someone has to pay to be near me. My truth suspects that madness might be contagious. My truth is that a clean person who sits in something dirty will become unclean. My truth declares that my heart has suffered enough, and has earned the right to hide in a corner.

The ultimate thing I feel is that parts of me have had enough once and for all, and that I am entitled to feel that way. I feel that I can not take too much of my emotions, and that I and everyone else has a right to be protected from them. I feel that I can work toward health a long time without bothering my feelings. Perhaps in time my feelings and I will both heal. But, for now, perhaps my feelings have earned a rest in a quiet place. I think they have.

 

A Woman of Little Substance

Serious mental health issues go hand in hand with serious substance abuse problems. It is an accepted fact in the mental health community. By some miracle, I have steered clear of the morass of drug and alcohol abuse and the long slow slide into addiction. Except cigarettes. I could eat cigarettes, I swear it. And I know that smoking is a nasty habit, and a very dangerous addiction. I fully expect to die of some disease caused by smoking. I’m okay with that. If I die of smoking, remember that I loved to smoke, remember that I used cigarettes to manage my anxiety, and remember that I said that I own those consequences, both the foreseeable and the unforeseeable.

But my mental health team is never worried about the cigarettes. They worry that I might be drinking, or smoking crack, or shooting heroin. Because substance abuse and schizophrenia are damn near like Siamese twins. If we throw a party, I might get drunk. It has been known to happen, but I’m talking about 3 or 4 times a year, not 3 or 4 times a week. I have had a long and glorious track record with psychedelics, but my body is no longer a fan, so I don’t eat acid or mushrooms anymore. And I never even used those drugs in a big huge way, except when I followed The Grateful Dead around for a while, but drug experiences while following The Dead are sort of like drug experiences in Brigadoon-great while it lasted, but no real world implications.

But I have watched the other patients over my years of treatment and group therapies. I have seen their struggle with substance abuse. I’ve seen them get clean, get sober, fly right for a time, and crash right back into the gutter. Amazingly addicts have taught me a lot about my own journey. I have learned that when my own life goes thundering off the rails that first and foremost I need to forgive myself. Then I need to earn the forgiveness of those I have harmed in my self-destructive cycles. Then, and only then can I stand up and start over at square one to rebuild my life. Addicts always come around to facing down their addictions, it is an amazing thing to watch.

I know that being in relationship with an addict is awful. I lost one of the great loves of my life to heroin. I know the lies, the broken promises, and the sordid dirty needles of living with an addict. I know that an addict will go to a NA (Narcotics Anonymous) meeting just to make a dope connection in a new town. But that same addict can hit rock bottom, skid through the gutter, do the strong hard, and awful work of regaining trust, fight the demons of withdrawal for the billionth time, and get back on the right track.

I thank my myriad shining Gods daily that I do not have to battle substance abuse along with fighting schizophrenia. I really really do.

Obatala y Oya
Thank you, my myriad shining Gods! Thank you!

But the addicts in our lives are a terrible, but precious gift from God. From the addicts we learn the strong, bitter lessons of trusting someone again after they have behaved in an untrustworthy manner. From the substance abuser, we learn to listen to the stories of an invisible war. We learn the art of compassion, and the art of letting go. From dead junkies, I learned how to behave at the funeral, how to identify a body, how to address a police detective, how to grieve with every cell in my body. It was truly an addict that forced me into a corner where I learned and accepted that unconditional love can really heal any horror. I don’t care who your God is, from gentle Jesus to raving Kali to the intellectual glimmer of Humanism, your religion still tells you to forgive, to help the less fortunate, to turn the other cheek, and to love thy neighbor, and if you struggle with the teachings of your religion, then make friends with an addict, they’ll take you all those places that I can not.

Sadly, we live in an addicted age. The social pressures upon us here and now are so great that many many souls seek the escapism of substance. From the middle aged woman with her boxes of chardonnay to the crack whore to the mid-Western kid bombed senseless on meth. And I’m not saying that addicts are heroes, and I’m not saying that addicts are victims, really I am not saying those things. In the throes of addiction, the user is a terrible person with a terrible and dangerous problem. Any sane and sensible person will avoid the addicted person at any cost.

But as spiritual persons, we need to expect more of ourselves. And most of us know an addict of some kind. So when the drunk or the junkie that you know comes to apologize, at least listen to them. If you can forgive them, do it. If you can’t forgive them, tell them why you can’t, and offer them a road back to your forgiveness. And try to be aware that people who are addicted are often fighting with a mental health issue; if they are not getting help, urge them to get help and do what you are able to facilitate them getting help. I can’t think of a single God who loves best His children when they are hard-hearted to the downtrodden. So try to forgive, try to accept and try to love them. That is a good way of doing God’s work, and we both know it.

My nurse friend gently, ever so gently nags me about my cigarettes. I don’t get mad or resentful when he does this. I know he is doing God’s work, too.

 

 

Do You Hear What I Hear?

I get asked why I am sometimes resistant to getting help.

I am resistant at times, I know it, and I don’t hide from that resistance. You see, my illness is normal for me, schizophrenia is my comfort zone. I’m smart enough to understand that a lot of my existential misery would simply evaporate if I could somehow become mentally healthy. And yet, I am resistant. I fear psychiatrists, therapists, medications, and other less mainstream treatment modalities like ECT. Frequently, I do find the courage to face up to and accept recommended treatment, but sometimes, I do not.

If I had a magic machine that could catapult you into the future to some fantasyland where there was world peace, where there was no sickness, where all of your day to day problems would be miraculously solved, I’d be willing to bet that very few people would be willing. Because this current time and place, these issues, these woes are familiar. You are comfortable here.

Health does not always feel as comfortable as illness.
Health does not always feel as comfortable as illness.

You can argue that mental health is a concrete, attainable goal, and that my machine is a hypothetical construct. I disagree. I strongly disagree. I don’t know of anyone living with mental illness who will say they are ‘cured’ or ‘better.’ At the very best, they will say guardedly that something seems to be working-for now.

When I fall deeply into my illness, I do not feel much in the way of hunger, tiredness, pain. When I am very sick, I never cry. My visions and voices can comfort and soothe me at least as much as they torment me. In my illness, I am visible at least to my invisible world. When I am in health, I live a marginalized life far removed from the real lives of friends and permanently estranged from my living family members.  If I am quiet when I am healthy, I can live as a forgotten person. When I am at my sickest, my voices, my visions are all attentive. In my unreal world, I am far more real than I am in your real world.

Understand that working toward mental health is not always an appealing process. And the newer team-centered approach puts a lot of the work squarely on the shoulders of the ill person. This is not like physical medicine where you just jump through the hoops prescribed by your doctor: get this test done, take this pill, see this specialist, and come back here in two weeks.

In mental health work today, your therapist will ask what you want to talk about. The days of the therapist saying, “Tell me about your mother…” are long gone. I can waste my hour with my therapist talking about the weather if I choose to. And I have. And I will again on the days when there is not much fight in me. But on my brave days, I give detailed accounts of being raped, of losing a love to the dubious joys of the needle and the spoon. I emerge from these sessions feeling like I am coming down with the flu. Chills, sweats, shaking, vomiting follow a ‘good’ therapy session as sure as night follows day. Often after a ‘good’ therapy session, I need to spend a day or two in a darkened room, just trying to re-integrate my personality. After a ‘good’ therapy session everything is too much.

Outside of therapy, there is a delicate juggling act between a regular MD and a psychiatrist MD. These two professionals endlessly circle like cats, unsure if they will fight or not. Territoriality among the professions is as rigid as the laws of the seraglio. The psychiatrist can withhold changes of medication, or new medication until the MD signs off on some aspect of the patient’s health. The MD can withhold medications for the patient’s physical health concerns until the psychiatrist approves. Often the middle ground is a compromise that does not actually offer the patient much relief.

As a participant in team centered mental health, you see a lot of waiting rooms. You can judge a waiting room good or bad with the barest glance. Too, you come to realize that you are better off, usually, in a bad waiting room. A bad waiting room means that no one waits there long enough to have complained. You fear the good waiting room-the one with the deep comfortable chairs and good magazines-you’ll be there for a while.

Struggling toward mental health is a long grim and difficult process. I’m not saying that the goal of mental health is not attainable or not worthwhile. I am saying that it is very very hard, and the journey never ends, and the destination is uncertain. Struggling for mental health is asking to be a permanent refugee. The mentally ill are not welcome in the realms of the mentally healthy, we always rub a bit wrong, our otherness is always visible.

The world I’m struggling toward as I fight a losing battle for mental health is fraught, and grey and distressing. The social issues are real and very disheartening. My illness burns in me as a vessel wrought of glass and fire. It casts strange lights. The eyeless angels and the faceless voices croon and embrace me. I can float in my world of beauty and horror, and if I am patient, I will see wonders. What we accept as mental health in this day and age is a half-life that will be marked with struggle and suffering, marked by poverty and isolation, marked by whisper, discreet pointed fingers, by stigma.

So, yes. Yes, yes, and yes, at times, I am resistant to my treatment team and their advice. At times on the road to wellness I turn and look back, daring fate to turn me into a pillar of salt. There is very little light on the road to recovery, and there is rarely hope. So I turn around. But my feet keep shuffling relentlessly forward.

Bullies Great and Small

I was about two hours old when I met my first bully. They say you never forget your first. They do say that.

My father was and is the meanest son of a bitch I ever met. He could explode at the drop of a hat over nothing. Or something. He was so unpredictable and violent that people just assumed he drank. Gods forgive me, I never told them differently. It was easier to have something-even a lie-to blame.

He hit with words: shouts and curses, and icy whispers. He hit with force: slaps, fists, grips that choked and tore. He hit with objects: dinners hurled across rooms, flung wrenches, car keys, radios. But he hit early and often.

I knew nothing of animals as a child, but I remember even as a very small kid, maybe three or four years old, that my first reflex relating to my father was to freeze silently. Like a rabbit when the shadow of a hawk passes over its small succulent body. I played silently from a very young age because my father didn’t like noise.

I do not know if my father hit my mother. Maybe I don’t want to know. Maybe there is no comfort in any answer. Is it better is everyone in the house is hit by the father? Or is it preferable that only you are hit by the father? I don’t know, and I’m not sure I care. I do know that my mother was as afraid of him as I was.

My mother’s parents bailed her out of everything, so I will never know why she didn’t run to Grammy and Poppy for help. Maybe because they had been strict and oppressive parents and she didn’t want to return to their home. Again, I don’t know.

My father and mother eventually divorced when I was in my early twenties, and he remarried one of my mother’s closest friends. Later he asked that my sister and I never contact him. I have complied with that request, albeit uneasily. I still feel disquieted to not send him a card for Christmas or his birthday-not out of love, but in fear that he will be angry if I don’t.

I felt like a natural born victim.
I felt like a natural born victim.

This is not a blog post about my daddy issues. It is a post about a pattern. And I’ve never seen anything written about the pattern I’m about to share, so maybe it is just me, or maybe I don’t read enough on the topic. Or maybe it isn’t real, after all I am supposed to be pretty crazy.

 

Long before I started school, I was in the habit of being bullied by my father. I was remarkably tolerant of screaming, of beatings, of having things thrown at me. I just shook and froze in silence. I believe now, and probably always will believe, that my silent, trapped response when my illness overwhelms me is rooted in that scared rabbit response as a young child.

If I ever cried easily, I don’t recall it now. It has always been a point of pride that I would not cry in front of my tormentors. It’s not that they couldn’t eventually break me down until I DID cry, I am human, and hurt hurts. But I made them fight for every tear every time.

School was an unexpected nightmare.

I was so excited to go to school! To have the opportunity to learn, to be free of that silent house that just waited for my father’s next outburst, to meet other boys and girls! I was expecting no less than Heaven. Of course, I found Hell. I was bullied in school from day one. I found myself the only bullied kindergartner. And here is the pattern. I believe that bullies can sense a victim.

My family moved often when I was growing up, and I never went to a new school where I was not bullied from the first minute.

The older I got, the weirder and more neurotic I became, so my behavior probably attracted bullies in my years of junior high and high school. But I don’t think I was particularly weird as a five or six year old. But they still could see me coming a mile away.

Over the years in school, I had my glasses broken countless times, gum put in my hair, again countless times, I have been kicked, hit, shoved, tripped, pushed down stairs, catcalled, mocked, ridiculed…you name it. My belongings were taken numerous times, As an older kid, I got used to finding used tampons, and excrement in my locker.

A low point in my school life was junior high and part of high school. I spent that time in a suburb of Spartanburg, South Carolina. There, a particularly sadistic and clever group of boys added outright sexual harassment to my daily dose of bullying. The school bus became a new Hell.

I know and you know goddam well that there were teachers who saw what was happening. It was not like it is now. They watched, and they let it happen. There was a guidance counselor who, I think, tried to help. Every once in a while, she would pull me into her office and tell me I didn’t look like I felt very well. She would ask if I wanted to go home. I always said yes, but in truth, home was the only place worse than school. But she tried, and I remember her kindly for it.

Believe it or not, my grades began to slip. This was not acceptable at home. Home being bad led to me being more neurotic, which led to me acting weirder at school, which led to more bullying, &c.

But at the lowest point, something happened. I was on the bus, the boys in the back were tugging my bookbag, my clarinet, my clothes, screaming “Pam, BABY!” and I was silently putting up with it, being pushed and prodded and dreaming of successful suicide when it suddenly all stopped.

There was no school bus, no boys, no clarinet…there was green grass under my feet, I could smell flowers, and I was surrounded by stone angels bearing books and swords. I thought my prayers had been answered, that Sweet Lord Jesus had sent his angels to take me safe to Heaven. I had no way of knowing that schizophrenia had arrived to take me to Hell and that those guardian angels would quickly become my jailers. I had no way of knowing that the Hell of schizophrenia is worse than the Hell of some precocious teenage boys.

So I Stopped

I stopped a long time ago. Stopped writing here, stopped seeing people, stopped doing stuff.

In one of those seismic shifts my invisible world came unmoored from its orbit and moved into the front of the seat of consciousness. I slid into it, into madness like the average person slips into a warm bath. For me, madness has always been easy. Numb and voiceless I drifted in my inner world of eyeless angels and headless dogs. No one watched me go.

I do not have a raving sort of madness, at my worst, I am voiceless. At my worst I am still, still as a starless night, still as a sleeping volcano. But like that sleeping volcano I seethe and roil deep in a place below sight and sound. In perfect stillness, in utter abandonment of life in the realms of the living. In unison my Gods turned their eyes away. I spent days with the word ‘macerate’ as my mantra.

Things went from bad to worse to oblivious. I did not care, I could not care, I would not care. My emotions were battered and bleeding from the death of a thousand cuts, and I did not speak it. My vortex world had caught me up and I spun there far below the surface.

Sometimes I could do small things: cook a meal, maybe vacuum a room. More often I could do nothing. Roll from one side to the other, light a cigarette. Smoking down there in the darkness. The fight for sanity is a long and bloody battle and I was wounded and weary of war. I had lost my will to battle for sanity in a world that seemed far crazier than I can ever dream of being. So I quit scrabbling, quit clawing at the sides and fell out of life.

Endlessly smoking deep in the dark.
Endlessly smoking deep in the dark.

And I know that my time in madness was a priceless gift. I slept indoors, was given food, and smokes real things with real costs that I neither earned nor deserved, but they were given freely, tirelessly, without remonstrance. My benefactor is not wealthy, he has a dead end part time retail job, and he somehow keeps the wolves from our door with only that pittance as his sword and shield. He is not kin and more than kind. Before him there was precious little ever given to me where there was not an invisible contract of debt.

Slowly, over a great deal of time those small and constant kindnesses begin to create tiny patches of light in the land of shadows. Slowly, over a great deal of time I began to fight a tiny bit.

I went back to my GP, went back on med…after med…after med. Nothing helped, but we just kept trying. Six weeks of effexor, six weeks of thorazine, six weeks of haldol, six weeks of seroquel, it was an endless loop with a haunted house of side effects and no efficacy in sight. Finally clozaril, my ancient enemy was pulled from the GP’s bag of tricks, and like a fool, I swallowed the pill from Hell. Clozaril is still the pill from Hell, and it rides a pale horse.

The GP advised me to find a psychiatrist, he was at his wits’ end. It’s like going to an online dating site as an act of desperation and finding you are a 98% match with Beelzebub. But there were no more options, so I called the Medical Assistance people to see about seeing a psychiatrist. This took me on a strange new journey. The Medical Assistance people were kind, warm and friendly on the telephone. They gave me a list of psychiatrists in my area who accepted Medical Assistance along with their phone numbers. I’m glad they made it so pleasant, because I had no idea that I would repeat this process fruitlessly 14 more times.

The Medical Assistance office just has pages from their phone directory-lists and endless lists of names and phone numbers of psychiatrists who accept Medical Assistance. In my time of calling psychiatrists, I called countless child psychiatrists, multitudes of methadone clinics, psychiatrists who only treated alcoholics, psychiatrists who only treated gender disorders, only treated phobias. I called psychiatrists who treated everything and everyone…except me.

My GP stuck by me, researching as he prescribed. Me and that doctor could hunt bears together. Last August, he put me on a pill that had an amazing new side effect-endless vomiting and diarrhea. I had never had such a side effect in my life, but I gamely took it the whole 6 weeks. And I was sick as a dog the whole six weeks.

The last drug my GP wrote for me was lithium. No one had ever prescribed lithium to me before. (this is not a love song) Along with my prescription, I was given orders for bloodwork to be drawn in 30 days to check the lithium levels. After just three days on lithium, I thought that it was making me sick, but I decided to soldier on. And I felt worse and worse.

Here’s an aside that is not an aside. Our housemate goes to Burning Man every year, and he went last year. He came home with some kind of large-festival GI bug…probably norovirus. He ended up in the ER. Two days later I was in the ER with the same thing. They gave me a ton of fluids, and bunch of shots of anti-barfing drugs and sent me home.

The housemate was fine, but I got sicker and sicker.

At about 3 am one morning in early October of 2015, I was awake barfing into my trusty trash can when it dawned on me that I no longer wanted to live like this. It wasn’t the suicidal impulse I was familiar with, it was a very reasoned idea. The idea that I had gotten too physically sick to live. I felt that bad…it was like I had had the flu for nearly 8 weeks.

The nature of my will to die was so different from my usual headlong plunges into suicide that it scared the shit out of me and I did something I have never done before. I called a suicide hotline. The suicide hotline lady talked to me for hours. She kept me company until we knew I could get a ride to the hospital. I was taken to the hospital ER for a standard psych admission, so they drew all my bloodwork prior to admission and put me in a psych ER bay.

For those of you who have never seen one of these charming places, it is a totally empty room with a flat table bolted to the floor. There are no pillows or blankets, just an empty room, like Sartre’s concept of Hell without the people. Past experience had taught me that I was going to be in there for a long time. Of course they took my shoes, clothes, and book away, too. I hunkered down to wait.

I did not have long to wait.

The door burst open and an avenging army of ER staff poured in. I was put on a gurney and shuttled rapidly to an ER ICU. Apparently my blood lithium levels were nearly lethal. I was in danger of seizures or death, and needed a bit of patching up before I would ever see the psych ward. I didn’t have seizures, I didn’t die, and after a couple days, they sent me up to psych.

The ward was decent, the coffee execrable, and the staff was exceptional. By the time I checked out 10 days later, my meds were at least workable, I had been assigned a psychiatrist, a therapist, and a type of hopped up social worker called a case manager to try to get my life back on track.

It is no walk in the park, I’ve seen the psychiatrist twice, and he has changed my meds radically twice. But I guess I’m back in the game, fighting again. It isn’t perfect, Hell it isn’t even good…but put in perspective, balanced against the landscape of what it has been, I’ll take it.