Sad Day for Schizophrenia: Grief and the Orisha

A friend of mine left the world today. It is a sad day. He was too young to die, but he had fought the good fight with Sweet Lady Cancer a long time. Saying good-bye is hard.

I woke up to this news, and all I really wanted was to pull the blankets over my head, roll up in a ball and hide. But that is not how you honor a fighter. When you honor a fighter, you fight the good fight, too. Even on a sad day, you fight. You follow the example. So I got up, I showered, I got dressed and I went to the appointment I had scheduled. But the best parts of me were still huddled under the blanket.

My appointment was with the ‘psycho-social vocational rehabilitation unit’ those are people who work very hard to find decent jobs for crazy people. None of that happened for me today. Today was an intake interview-just filling out endless forms. But it is a start, a small step in the right direction. So progress was made, even on this sad day.

I’m glad the appointment was just routine paperwork. I just sat and signed and dated the forms as directed. My mind was free to remember my friend-late night talks about weird and esoteric things, his face at crowded parties, head thrown back laughing, his serious face as he contemplated deep, deep unfathomable things. The memories called up an entire spectrum of feelings, it brought life and brightness into a grey and sad day.

For anyone, mentally stable or not, grief is a slippery state. Grief is a dark sequence of emotions, and they must be carefully traversed, and they must be fully traversed.

In my mind I begin to walk the well-worn path of grief for one who died too young. I really wish this path was the proverbial ‘Road Less Traveled’ but it is not. This path is wider and smoother than it should be. It is more familiar than it has any right to be. When I find this path in my psyche again I know that it is a sad day.

The Orisha calm me on sad days
Obatala from NacionYoruba.com

.

I can not grieve only for this man who today died too young. All the others dead too soon crowd around me. I see the faces I will never see again, hear their voices, feel their hands gripping at me. All this grievous company clamor to me. ‘Remember me’ ‘Remember me’ they entreat. As if I could forget them, as if any of us could forget them. And today, there is a new face among them.

This was not the week for me to have to cancel my therapy appointment, but I had to, so it is as it is.

The voices are loud today. Every shadow has hands that grasp. I see a hundred expressions of his face in every reflection. Pete had to go to work early, so I am home alone, and today the house is very haunted.

I remember how we used to flirt outrageously at parties back before he got a girlfriend. Now he is gone with all those sweet might-have-beens.

And I am here.

Sanity is a struggle today. It would be easier to fall into the abyss. Today is one of those days where I would prefer to run toward the voices instead of running away from them. But that is no way to honor a fighter. That is no way to remember a warrior.

I struggle to control my ragged breathing. I stick my hands to the surface of this laptop. I grasp the silvery sides of the laptop, reminding myself that this is real. I urge myself to stay here, to follow the thread of this writing. I fight to remember that this is real. This reality is where I am expected to be. This reality is the place where I must function.

Facebook is overwhelming today. My feed is one post after another of my clan expressing their good-byes. It is a twenty-one gun salute of shock and sorrow. I try to stay away from the facebook page, but it bings seemingly non-stop. Chat windows appear with maddening frequency. Some of the windows are of my own doing as plans are made to attend the service. Rides are arranged, plans are made. Other windows are those who need to talk about it.

I am shaky in my own skin. But people need to talk. I know they are not talking to me, they are talking to the priestess aspect of me. With shaking hands, I straighten my invisible crown. I remember whose daughter I am.

I find it funny.

When my struggles to remain in the material world are so great that I might fall, it is my Gods in the invisible realm who help me stay. Maferefunfun, Obatala! (a blessing of cool whiteness to Obatala whose child I am)

When I am actualized in Orisha, (benevolent spirits, lesser Gods) I feel stable and in control of my life. But it is hard to maintain. Also, you can’t get too religious while you are in mental health treatment. There is a type of religious fixation that is common in schizophrenics-it is a warning sign to the whole treatment team, and it is an express ticket to a psych ward. So I need to thread my way carefully. It is hard this picking and choosing. It would be easier to be completely candid with my treatment team, but I do not care for psych wards, so I must be cautious. I can never share what the Gods tell me. I can never admit that most of the good and sound advice I act on comes from my Gods, not the advice of others or my own good judgement. I can not admit that I see the shining realms and expect to be believed.

There are no role models of how to be Priestess and Patient. There are no good words guiding you on how to grieve for your own loss, but shoulder the grief of others. There are no good ways to explain to your therapist that on certain days, under certain circumstances that the silent eyeless angels come alive, that they have hands and faces and names. To tell that for this next while that I will not ever be alone, to try to explain that there is no discord between the words ‘haunted’ and ‘beloved.’

Beloved of the Dead is how I was named. Nothing could be more true.

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.