The Slippery Slope of Spiritual Poverty

I know that when my physical and mental states are in poverty that I fall easily into the trap of spiritual poverty. It is hard to avoid. No matter how excellent the mental health care one receives is, mental health care does not provide any type of spiritual support. There is a small movement, in its infancy, which seeks to change the current model of mental health care to add more spiritual and family support, but it is a long way from any type of implementation.

When my mental illness is at its worst it compels a withdrawal from ordinary social contact, so the I withdraw from my church and my spiritual elders and this begins the cycle of spiritual poverty. When I can not afford to purchase appropriate offerings for my Gods, I lose faith in the simple offerings than I am able to afford, and I cease making offerings at all. When I can not make offerings, I feel ashamed to approach my altars, so they go untended. Without access to my altars, I fall out of the practice of prayer, and I become divorced from my spiritual practices. This separation from spiritual practice is the ugly face of spiritual poverty.

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

Living in a state of spiritual poverty removes a lot of joy and wonder from my life, and when this is paired with depression, hearing voices, seeing things that are not there, shame, humiliation, and anxiety I tend to spiral downward rapidly. This pattern of spiritual poverty has been the hardest of my patterns to break. I usually can not break it until I can once again afford to make appropriate offerings. Then I slowly can reclaim my spiritual life, and with my spiritual life restored, gradually the depression will lift. When I am less depressed the anxiety and the schizophrenia will lessen.

And I know this from repeated downward spirals. I know that if I can cling to my spiritual practice that I will not fall so far so fast. And yet I still lose my religion as soon as the spiraling begins. Currently, I have a job that pays decently, so I am beginning to do better. Most of my pay is spent on bills and the things I need to succeed in my new job, so I still can not afford really good offerings, but I can afford small appropriate offerings, so my altars are being tended, I have gotten back into the practice of praying, and I feel that connection with my religion once again.

But we have these patterns so we can learn from them. And I am struggling to learn from this pattern so I do not need to repeat it.

I am coming to accept that if I am going to break this pattern I need to seek help outside of myself. But asking for help does not come easily to me. I have decided that I need to begin praying to my Gods that I don’t get lost from them when things get bad. I have decided that I need to tell my therapist that staying on a spiritually even keel needs to be a major goal of therapy. But these two decisions are going to be complex. I feel very shy of asking my Gods to keep me from getting lost, I fear that losing my Gods shows poor character on my part, and my religion ever strives toward good character. I really don’t want my Gods to think poorly of me. And any discussion of spiritual matters with my therapist is getting into dangerous water. Because schizophrenia often causes inappropriate religious fixations, treatment for schizophrenia tends to be very leery of spiritual matters.

But I must overcome my fears, both the real fears and the imagined ones. I must remember that my Gods love me warts and all. I must remember that my therapist and I have been working together for several months, and that she knows that I do not have inappropriate religious fixations, and that she can help me to find ways to stay spiritually balanced.

Spiritual poverty is a destructive force in my life, and I must use all of the tools that I have to break its hold on me. My life, when it is good, is a spiritually rich place, and when I live in awareness of my spiritual wealth, my life is a joy. When I am in a state of spiritual poverty, my life is a burden, my life is something I no longer want.

I do not pretend to know how spiritual wealth and poverty effect anyone but me, but it is very clear to me that, for me, choosing spiritual wealth is a matter of life or death.

Suicidal: Conversations on the Edge

This is a collection of observations based on times when I or a friend was suicidal. Do not freak out. I am not suicidal now. My thinking is, I admit, a bit disordered because of my toothache, but I’m quite safe.

Many of us, in the course of a lifetime will either talk TO a suicidal person, or talk AS a suicidal person. And I think we all wonder what to say or do…as usual with these posts, there is no one answer that is always right. And sometimes, an answer I list here as a wrong answer might be the right answer in a particular situation. You see, humans are capable of infinite diversity.

Scarred forearms of a schizophrenic.. Suicidal people might engage in self harm
Photograph by: James G. Owen

As always, I advise you to take suicidal persons seriously. If you have no idea what to do call this number. If the suicidal person is unable or unwilling to talk on the phone, they will talk to you and tell you what to do. Don’t get alarmed or frustrated if the suicidal person will not talk on the phone. It’s not just me, many suicidal people get weird about the phone.

Remember, when you are talking to a suicidal person, you are talking more to an illness than a person. Their illness has already shot down any positive thoughts they might try to cling to. It rarely helps a suicidal person if you approach them with the ‘Think of all you have to live for’ line. That illness, that depression, that bi-polar, that schizophrenia has already undermined all the good bright things in life. The ‘Think of all you have to live for’ attitude may only increase their sense of guilt, shame, and depression.

Another thing well-intentioned people do is try to play John Wayne playing a good-hearted Army sergeant. They grab you and say ‘Talk to me!’ This approach can scare or intimidate the suicidal person badly. A better tactic is saying “May I listen?” Remember that a suicidal person is living in a realm of rapidly diminishing choices. Their tunnel vision is tapering down to a single point. Inviting them to talk adds a new option, and it sometimes can change how they view the world.

Sometimes suicidal people engage in self-harm. Most cutters, burners, and scratchers only engage in these behaviors privately. But when people are very suicidal, they can become disinhibited, so you might see these behaviors. And they are not pretty things to see. Everyone who sees self-harm wants to say “Stop that!” and that is a reasonable impulse. But curb that impulse. Ask them, instead, “Are you doing that so you don’t do something worse?” Now, that might seem like I’m giving you poor advice, and it is poor advice, but it is also sound advice. Weigh the consequences. You would prefer to have your friend as a live cutter than as a dead friend who will never cut again.

Suicidal people often quit sleeping or eating. And that isn’t good. Try tempting them to eat with hyper-palatable foods…try ice cream, milkshakes, twinkies, doritos, whatever you think they might eat. Don’t worry that you are offering them unhealthy choices, just try to get some food in them (and if it’s me, offer pork rinds!) If they aren’t sleeping, try to get them to take a nap. They will be resistant. Build them a blanket fort to nap in, let them put their head in your lap to sleep, promise to stay while they sleep…again, do whatever you can to get them to sleep.

When you are dealing with a suicidal person, realize that they are still ‘in there’ they are just very small, very scared, and nearly voiceless. Their illness has grown large. It occupies all the space where the person normally lives. The person you know has been crowded into a very tiny corner. So speak slowly and clearly. Be prepared to repeat yourself. Your voice is a tiny whisper, the illness is roaring.

Remember, too, that the illness is the enemy. This sick, suffering person is not the enemy. You are not trying to outwit the person to get them to a safe place, you are trying to outwit the illness. The struggle is real, but you will make a mess of things if you do not know what you are struggling with. Also remember that getting the person to agree to go to the hospital can be very difficult. It is even more difficult if the person has been checked in before.

Suicidal People might be afraid to go to the hospital
Health does not always feel as comfortable as illness.
Image by ♥KatB Photography♥

The hospital will take the person’s complaint very seriously. The hospital will go to heroic lengths to keep the person safe. But the hospital is, first and foremost, a hospital. The scared, sick, suicidal person will be subjected to indignities, they will wait a long time in an ER bay (waits of 2 days to be admitted to psych are not uncommon) The hospital is good at what it is good at, warmth and comfort are not areas where the hospital excels.

But getting the suicidal person to get help, getting them to go to the hospital should be a major goal. BUT do not lie to them to get them to go. Find another way to get them to agree. Understand that they might very well know exactly what the hospital will be like. Understand that they are scared to go to the hospital. Understand that they do not want to put up with the indignities of the hospital. Just keep truthfully bringing it up as the best option. (and, sadly, it is the best option, in fact, it is the only option.) Try to offer to take them to a ‘better’ hospital. Because we all know that some hospitals are better than others. We all know that the better hospital might transfer them to a hospital that is not so good, but going to the better hospital greatly increases the odds that they will be admitted there.

Finally. A suicidal person is generally not seeking attention. If they reached out to you, it was the last desperate act. Reaching out to you took tremendous effort, probably it took all their energy to do it. They are being suffocated under the weight and volume of their illness. Do your level best to get them help. There is something about you that the suicidal person believed and trusted in with the last of their will. If a suicidal person asks for your help they are telling you how highly they think of you.

In very rare cases, some types of illness use suicidal threats and behaviors as a way to manipulate others. These illnesses are more rare. And being used like that makes YOU feel terrible. You can feel angry or betrayed. Try to put that confusion and those negative feelings aside. Remember that this person has gotten so sick that they are threatening themselves to be heard. Get them to a hospital, get them help. They are really sick, and they are a very real danger to themselves.

Basically, helping a suicidal person is the same as being a good friend at any other time. Have empathy. Listen intelligently. Use your head and your heart. Put yourself in their shoes. And act decisively to get them the help they need. The world is a hard and scary place sometimes. We need all of our friends healthy and alive as long as normal mortality permits.

Suicide and Suicidal Thoughts: An Inside Perspective

Remember:

Oppression thrives off isolation. Connection is the only thing that can save you.

Remember:

Oppression thrives off superficiality. Honesty about your struggles is the key to your liberation.

Remember:

Your story can help save someone’s life. Your silence contributes to someone else’s struggles. Speak so we can all be free. Love so we can all be liberated. The moment is now. We need you.

~Yolo Akili

A dear friend of mine shared these words with me a while back, and I took them personally. They reminded me of why I chose to come out of my shell a little bit and write this blog. They reminded me that I have a responsibility to save my own life first and foremost. They reminded me that if I save my own life, I might then be able to help someone else save theirs.

I’m in sorry shape right now, holding in there with this toothache that has been horrible for over three weeks now.  I told the housemate the other night that I was having a hard time with the toothache. No one wants to live with a bad toothache. I don’t want to live with a bad toothache. But I have to be clear with myself that there is a huge difference between the words ‘I don’t want to live with this toothache’ and ‘I don’t want to live.’ I got caught up in the toothache and lost sight of the difference between the sentences for a short time. But I climbed back on the horse. And I really don’t want to live with this toothache.

Voodoo doll with large clamp on her head. An image of suffering.
Voodoo Doll Tatto Flash by S. Grice, colored by me.

 

But even as recently as this past October I could not differentiate between ‘I don’t want to live if I have to feel this sick’ and ‘I don’t want to live.’ And I got lucky on that one. If I hadn’t gone to the hospital crying ‘I don’t want to live’ I may have died from a near-fatal lithium level. You see, the lines get blurry and there isn’t always a right or wrong answer when someone is feeling suicidal.

I believe that every person to some degree or other has a suicidal impulse. I think part of free will and self-determinism is exploring the idea of NOT living anymore. Some people will only ever think of suicide in the most abstract fashion, “I was so embarrassed I wanted to die.” Some people react to many conundrums with some kind of suicidal impulse. I must admit that I fall into the latter camp. If I am brutally honest, even on my best days, suicide crosses my mind at least once. On bad days, it is the only thought I can hold in my head.

I don’t like to talk about this. Probably no one does. Someone who constantly talks of suicide begins to look manipulative, and even if they aren’t manipulative, the topic is pretty much a downer. Whether I like to talk about it or not, today I’m going to talk about it.

Now do not, I repeat, do not get freaked out. I’m talking about my thoughts here. I am not talking about actions. I’m fine, I just have a toothache. I’m not letting a toothache push me off the Dravosburg Bridge. So remain calm, remain seated, keep your trays in the locked upright position.

I think there are a surprising number of people who go through their entire lives being quietly passively suicidal. For the most part, they just buckle down and get on with it. But life can be hard and a big enough stress, or a bad enough situation (say a toothache that is over 3 weeks old) can push that suicidal inclination from background noise right to the forefront of their awareness. That person’s interior landscape changes dramatically. Suddenly the background noise has become a looming presence right in front of them shining a flashlight right into their eyes, blinding them to anything else. I’m sure it is different for everyone, but that it how it is to me.

Suddenly the person finds themselves in direct conflict with their very self. The will is screaming ‘DIE!’ while the body is screaming, ‘LIVE!’ The body becomes the enemy that must be defeated. Some people attack the body directly-they become the self-harmers, the cutters, the scratchers, the burners. Some people begin to quietly plot elaborate revenge on the body-they become the smokers, the drinkers, the hard drug users. Some people strive to outwit the body-they begin to pay careful attention to the contents of their medicine cabinets, they take careful note of tall buildings they encounter, they observe every rope, every bridge abutment. And some people try to retreat from their body completely-they withdraw, they become unresponsive. I’m a mix of all four, and probably most people are.  And look, I’m not saying that every person who exhibits these signs is necessarily suicidal, most probably are not…but if your friend gets weird in a way that you find scary, never rule out that they might be suicidal.

There is good news and there is bad news about suicide. The good news is that most people fail at it. The bad news is that some people do not fail at it. Every person experiencing suicidal thoughts and urges should be viewed as a potentially successful suicide. They should be gotten to a safe place like a hospital or treatment center with all possible haste, and they should be helped to feel safe with themselves. If you don’t know what to do for them call this number.  And don’t feel bad about calling, sometimes the smartest thing you can do is call an expert. Please don’t mistake my next words. Suicidal people should be helped. Please don’t mistake my next words.

BUT.

BUT.

For some of us, we need to think these things all the way through. Sometimes alone, sometimes with help. But we have the right to our thoughts where we might not necessarily have the rights to our actions. I told someone here at the house that I was feeling suicidal. I explained why the normal actions were not appropriate in this case (if I am locked up in the looney bin, I might miss the dentists appointments that can fix the toothache, duh) and I retreated to my room to think it through. And my friend checked in on me regularly. I thought about things this way and that way. And I was able to realize that suicide is not an optimal toothache cure. And that sounds funny and obvious when I write it here, but it was not funny or obvious while I was arriving at that conclusion. It was big and dark and scary. But it was only big, dark, scary thoughts. There were no actions. “Just” thoughts.

I feel like I should tell you things to say or do for a suicidal person, and I promise I will in another post. What I want to say to you right now instead is this. I think there are a lot of people out there who are passively suicidal. I think if science were ever able to study that number, many people would be shocked at how many there are. And I think people have a right to be passively suicidal, they have a right to their thoughts, and they have the right to think them through. BUT. If someone tells you that they are feeling suicidal, then they are no longer passively suicidal, they are actively suicidal, get them to help and safety with all possible haste. BUT sometimes life gets weird. Sometimes a person IS actively suicidal, but being in the hospital could actually make the situation worse (say they have a toothache that has gone on forever…) then keep them safe yourself if there is no alternative. Be an intelligent friend. Give them some space, but be present, check on them, be prepared to interfere. Believe me, if I had taken one suicidal action, I would be writing this post from inside a hospital. I am blessed to have intelligent friends.

A Cure for Schizophrenia: Genetics Versus Angels

Currently there is no cure for schizophrenia. Currently, there are not even actually anti-schizophrenic drugs. Most schizophrenics are treated with anti-psychotic drugs. Those drugs are used, often in combination with anti-depressants, anti-anxiety drugs, and drugs for bi-polar conditions. These ‘cocktails’ of medications can lessen symptoms, but they carry a host of side effects, and they are far from a cure for schizophrenia.

Since the 1970’s, doctors and scientists have searched for a genetic link for schizophrenia, and even earlier, they were seeking hereditary factors for the disease. Science today seeks out root causes of illness in order to treat and cure that illness at its roots. ‘The New Yorker’ published this article which shows that dedicated scientists are growing ever closer to establishing a genetic link for schizophrenia.

But I am not jumping for joy.

tumblr_lzcsv8iBPY1r5q04zo1_500 The cure for schizophrenia might be worse than the disease.

The question that burns in my mind is ‘how much of my Self am I willing to trade to be cured of schizophrenia?’ The answer, it turns out is that I am completely unwilling to trade any of myself, the good, the bad, or the ugly in order to seek a cure.

Schizophrenia is not only a condition I ‘suffer’ with, it is a huge part of who I am. There are dangerous lows which I must traverse with great care. And there are crackling highs where my priestess-self emerges incandescent from the flames of madness. In the lows dwell my voices, my hallucinations, my angels. From those lows come my poetry my word-weaving…from those lows, I can tear my heart open and hand you the verbal viscera of my soul. And science offers me…a cure?

I know that our society does not value the lives of the mentally ill very highly. It is a struggle to jump through all the hoops to simply remain in treatment. Sometimes I am not in any mental shape to vault through those hoops alone. I’ve said it before, and I’m sure I’ll say it again: if it were not for the love and dedication of my housemate, I don’t know where I’d be right now, but it certainly would not be an improvement on where I am…but anyway society does not value the lives of the mentally ill. We must struggle to get the care we need, often if we are able to get care the hospitals and outpatient services are so understaffed we get only the most brusque and cursory care. And that is hard, so hard to deal with when we are suicidal, delusional, vulnerable and frightened. A percentage of us will not make it. And that is hard to live with.

Black and white painting of a figure running through clouds of nightmare. The cure for schizophrenia might not be an answer.
Panic! By Sri Lankan artist Sujith Rathnayake

But when you offer us a cure that is based on genetics, a cure that is based on preventing the onset of the disease that might be perpetrated on children who have shown no symptoms of schizophrenia you start scaring me, Society. I know you hold my life and the life of others like me to be of little value, but you might be surprised that I do value my life greatly. I value my life enough to go to endless appointments, to check myself in when I know I’m not safe, to call this number if I can do nothing else to save myself. It may surprise you, Society, to learn that suicidal people value their lives enough to use these resources, but we do, we do.

So would I trade my personality for a cure for schizophrenia? No way. My living Gods created me to be as I am. And I believe that to the very fiber of my being. I believe that my schizophrenia, in some small way, serves my God’s higher purpose. I work with my treatment team to manage my symptoms, but even there, the treatment is not designed to turn me into a mindless Thorazine Zombie, I remain somewhat symptomatic, but much more functional. And my personality, the rhythms of my illness remain intact, albeit somewhat blunted. And, yes, I live in the world of side effects. My mouth is perpetually dry, I have tooth loss and gum disease related to years of dry mouth, my intestines have a will of their own, I am dizzy, drowsy, and faint by turns…and the list goes on and on. But I have my Self for good company on this journey through life. I have knowledge of my Gods. I have still my voices and my angels, and much less of the dangerous voices and much less of the dangerous hallucinations.

In J. R. R. Tolkien’s excellent book “The Fellowship of the Ring” Frodo offers the One Ring to Galadriel. Here is what happened:

“And now at last it comes. You will give me the Ring freely! In place of the Dark Lord you will set up a Queen. And I shall not be dark, but beautiful and terrible as the Morning and the Night! Fair as the Sea and the Sun and the Snow upon the Mountain! Dreadful as the Storm and the Lightning! Stronger than the foundations of the earth. All shall love me and despair!”

She lifted up her hand and from the ring that she wore there issued a great light that illuminated her alone and left all else dark. She stood before Frodo seeming now tall beyond measurement, and beautiful beyond enduring, terrible and worshipful. Then she let her hand fall, and the light faded, and suddenly she laughed again, and lo! she was shrunken: a slender elf-woman, clad in simple white, whose gentle voice was soft and sad.

“I pass the test”, she said. “I will diminish, and go into the West and remain Galadriel.”

And that is how I feel about a cure for my schizophrenia. It has the appeal, the power of the One Ring. I think of all I could do even yet…I think of how I would be, the dragons I might slay. But then I consider the cost, the loss of my Gods, my angels…all of my spiritual self might be traded for that elusive cure. I pass the test. I will diminish and go into the West. I will remain Pam.

 

Undermining Myself: Schizophrenia and Loss of Self-Confidence

Schizophrenia is a mental condition that can lead me into dangerous or disastrous thought patterns. Over the years, it has done so repeatedly. I can’t trust my schizophrenic thoughts to ever lead me to a good place. The problem with schizophrenic thoughts is that I can’t generally distinguish schizophrenic thoughts and thought patterns from healthy thoughts and thought patterns. I can’t trust that my own thoughts are in my best interests. This is a bizarre way to live. I have no self-confidence in my simplest thought or observation. I can’t. If I want to finally break the endless cycle of suicide attempts, hospitalizations, ruining my life, and starting over each time with a little less then I need to minimize the potential harm of schizophrenic thoughts and thought patterns.

Generally, this means I’m neurotic on a day to day basis. I bother my friends, seemingly ceaselessly. I need corroboration of my simplest experiences. Is it too cold out? Does this taste awful to you? Can you understand me? Did that make sense? I ask these kinds of questions repeatedly. I don’t ask these questions because I need validation. I ask because there are times-lots of times, sadly-when I honestly get the answers to these questions and many others wrong. And that’s just the little petty irritating stuff.

Bigger, more important issues have traditionally caused me much bigger problems. And my track record with bigger issues is even worse than with the petty stuff, and, of course, the consequences are disproportionately larger. Let’s face it, if I eat something that tastes yucky, so what? If I go out on a cold day without a coat, I’ll be uncomfortable, so what? But when we come to decisions-like how poorly I handle money, like whether I’m going to make a suicide attempt, like if I manage to get fired from my good job; those consequences in my life are cataclysmic.

The long and short of it is that I have no self-confidence in my thoughts or decisions. And there is a lifetime’s history of good reason why I don’t.

Drawing of schizophrenic robot sitting in total isolation
Image by: mailowilliams

So I develop adaptive behaviors. I ask petty irritating questions, and my friends forgive me. My friend accompanies me to appointments. He patiently sits through appointments with the social worker, the psychiatrist, the therapist, and others. I think his support and insights deserve much of the credit for this round of treatment going so well. His presence has been tolerated by most of the professionals I see, but the social worker seemed wary of his presence at first. (When she learned that he was not there to interfere, she relaxed.)

But some places, some appointments just make you feel like bringing another person into your appointment is inappropriate. In those circumstances, I have trusted in the professional capability of the people there. Thus, I have successfully gotten mammograms and PAP tests done with no issue. I also anticipated no issue when I began seeing a dentist in January.

I could not have been more wrong.

At first, it seemed fine. The office was super clean, state of the art, although there were never any patients there when we arrived. At my first two appointments, the dentist seemed kind and competent. Then the dentist pulled four teeth and sent me home with a prescription for Tramadol. I have had Tramadol before for minor pains, and it worked well enough, and though I had never had it after dental work before, I trusted it would work adequately. It didn’t. But I just toughed it out. At the next appointment, the dentist was going to fill 4 teeth. As soon as he began drilling, it was clear to me that my mouth wasn’t numb. I told him he was really hurting me…and he just picked up his drill again. He never acknowledged my pain, and once told me roughly to ‘sit still!’

Any sane person would have run away from this dentist at this point, I think. But not me! I convinced myself that I could not be perceiving the situation correctly, I blamed the schizophrenia. I blamed the anxiety. I blamed everything except the dentist who was hurting me.

Twelve hours after those fillings, my teeth hurt like nothing I’ve ever experienced. Of course, by then his office was closed. I got in touch with the office the next day (a Wednesday) and was told he would see me the following Monday as scheduled, but not before. When I explained that I was in a lot of pain (which seemed to be getting worse) the receptionist offered to ‘call something in.’ What was called in was more Tramadol. It did not help at all. I spent a Hellish 5 days. And let me clarify, I’m no wimp when it comes to pain, I’m heavily tattooed, I had a baby on a sofa, this was real crippling pain. When I got into the dental office on Monday, I explained that I was in more pain than I could stand. The dentist just picked up his drill. Not the Novocain, the drill. There are no words for how bad his ‘improvement’ hurt.

I asked for something for the pain, and was accused of drug-seeking behavior. I was hurting so bad, and was so appalled by the drug-seeking accusation, I finally told my friend what had been going on. He suggested that I not mess around, but that I do what I needed to do in order to see a different dentist. I think I cried with relief.

I saw a different dentist who explained that the first dentist had drilled extensively into the roots and nerves of my teeth. He wouldn’t touch it. He wrote me a prescription for Vicodin, and sent me to an oral surgeon. Now I am awaiting major oral surgery. And hoping Medical Assistance does not force me to return to the first dentist.

Mental illness undermines my confidence that I can properly respond to my thoughts, my feelings and situations I find myself in. I feel angry, betrayed, and frustrated that my distrust of my own perceptions led me to continue seeing a dentist who was causing me so much pain. I worry that if I am unable to respond appropriately to a situation as clear-cut as the dentist, am I really doing as well as I think. I feel deeply ashamed and fearful that I might never be able to have true control of my life. Now I am acutely fearful of meeting an abusive person. I distrust my decisions. I distrust my schizophrenia. I distrust myself.

 

Kicking the Closet Door

Sometimes I really wonder why I do this. I don’t like being so very public about my private life, and my schizophrenia really does not like this level of publicity either. But I guess for me, it is a form of coming out.

Like homosexuality, mental illness has been in the closet just about forever. I have been in the closet all my life. And as I have grown older, I have watched my GLBTQ friends come out. I have watched them begin to LIVE their lives, instead of living a lie. And I was envious. I was even envious when they did not get support from their friends and family. At least they were free to be themselves. At least they were free to find friendship and support for who they were.

Me, I stayed in my little box. It never dawned on me that there could be friendship or support if I admitted I was schizophrenic. Publicly admitting to having schizophrenia never crossed my mind. I never imagined a world where I could be myself and have my illness and be honest about it. So forgive me. The lies come easily, and the truth comes hard.

And my whole life was a lie until I was nearly forty years old.

When I was a kid, even a very small kid the lie was that we had a normal happy family. We were never to admit even the smallest truth of what a cesspit of abuse and dysfunction was there.(or ELSE!) I never told anyone about what went on at home, I was afraid to. Even now, I only give a sketch of how it was. I’m still afraid to tell. I have had no contact with my parents for years, and I feel ashamed of that, but not so ashamed as to jump back into the cesspool. I still obsessively search for an obituary for my father. In my mind, when he is dead, and I know he is dead, I will be able to live free of fear at last. (and I am aware that is not true; probably I will fear him till my dying day)

When I got older and began to exhibit psychiatric symptoms that required treatment, everyone was told I had ‘strep throat’ or ‘mono.’ I probably have the only case of strep throat in medical history that was cured by haldol. Even as a young adult, I got the distinct impression that I needed to keep my illness hidden. Every psych ward I was ever on went to great lengths to reassure me of their ‘total discretion.’

Art by Alice Rex
Art by Alice Rex

There are no great schizophrenic role models or mentors. If you hear the word schizophrenic on TV, it is probably on the news, and the news is probably not going to be good. Even going through the mental health systems for all these years, I never met another person on a psych ward who admitted to having schizophrenia. Not one. And in all my years of life, I have met one other person who admits to being schizophrenic. One. I’m sure I have met many other schizophrenics, I have met a lot of people in my life, and 1.1 percent of the US population suffer from schizophrenia, but the disease remains largely invisible, and its sufferers remain deeply secretive about it.

Somewhere around my fortieth birthday, I made a conscious choice to try to live more truthfully. I decided to be more open and honest about who I am and what I have. Honestly, I fail most days. Being who I am is often uncomfortable, and sometimes unbearable. But I am still struggling toward those goals of openness and honesty. I try to be patient with myself when I fall short.

So I write this. And I put it on the internet where anybody can see it. Not because I think I’m doing a particularly good job of it, but because someone has to. Someone has to start punching and kicking at those closet walls. Someone has to want to take a breath of air as a free person. And that someone seems to be me.

I have accepted that schizophrenia is as much a part of me as my spleen. I can deal with the reality of my illness, and try to learn better ways to live with it. But I don’t have to live in a box in the dark because of it.

I’m not deluding myself either. Schizophrenia DOES have a stigma attached to it in America in 2016, and some people won’t want anything to do with me. They have that right, and I’m not going to be judgmental about it. (I remain judgmental about racism or homophobia, though) Unlike Civil Rights or GLBTQ Rights, mental health advocacy in this country has had very little success in educating citizens that mental health patients are not dangerous. I think they are working on it, but I think they have a long difficult path to bring about those changes in perception.

The only thing I know for sure about beginning to live openly as a schizophrenic is that I am lucky to have some amazing, supportive, and tolerant people around me. Because of their myriad gracious deeds, I am still here struggling toward the light. I hope they know who they are.

Between Madness and Priestess: Dancing the Tightrope

There is a delicate balancing act between the part of me that is a functioning priestess and the part of me that is desperately trying to step out of my own madness.

And it is not easy to understand, and it is not easy to explain.

The people who do not know me well see the chalice, the sword, the diadem. They approach me shyly, thanking me for my words, my service. People who barely know me never see the price beyond the regalia, and they never seem to realize that at my best moments of priestessing, I have shed my own self and plunged into the sacred spring where the goddess and the madwoman lie tangled in their eternal embrace.

Photo of Author as priestess
Me as a priestess with a priest, ready to begin the work

The people who know me well can see almost the exact instant that I leave my self. They see the wounds, the scars, the mess I have made of my own life. My closest circle of friends feel better I think when I set aside the chalice and the blade and live a more solid mundane life. Those who love me want me to be safe, and good priestessing is not safe.

And neither of those things are true for me. And both of those things are true for me.

I need stability in my life. I need to be able to simply chop wood and carry water. I need enough of the material world that my basic needs are met. And I am working toward that again. Schizophrenia is cyclical for me. When it is upon me, it is like driving in a blizzard-slipping wildly, no matter how carefully I handle the wheel, millions of particles flying into my vision hypnotizing me, until I crash in an unpleasant ditch. It takes me years to re-integrate myself, to be organized and clear enough to reinvent myself and start over from square one. And I’m doing that work now, gathering up what was shattered and meticulously gluing my life back together.

I also need magick in my life. I need to fall lusciously into the lap of the goddess. I need to be in the place in the time in the Stone Circle casting circle for the people. I need to plumb the depths of my own soul, and the depths of the cosmic unconscious. I have always been a good tool of the Gods. I can easily fall away from myself, and leave all that space for them. The hilt of the sword remembers my hands, the path around the altar knows my feet, the people have found good help in my words and my works.

Balancing these is hard work. No wonder I sometimes stumble and drop it all. For the mundane life demands I not stray into the realms of madness and the magickal life demands I leap in into madness in my full faith.

When all is well, when all is well, when all manner of things are well I can balance that liminal state. I can live as a fulcrum between those wildly diverse worlds. But to do it requires impeccability. And I am all too human. I can be very disciplined for periods of time-eating well, sleeping well, making good choices. But eventually I make a poor choice. And when I make that one poor choice, all the poor choices I have not made clamor for my attention, and I make all the poor choices at once, and the center can not hold.

I have tried to have only the normal stable life. I have walked away from being a priestess at least as many times as I have derailed my life-maybe more. When I have that life, I do not value it. A life without the wine in the cup of life which is the cauldron of Cerridwen, holy grail of immortality is a life I do not want. Living cut off from the parts of me that are a gifted priestess is my fastest road to a suicide attempt out of a clear blue sky.

As I rebuild my life those closest to me are being tested on the altars of loss, friends, family, and heroes are dying in numbers close to those closest to me. And the people come to me. I do not beckon them, they just come in their pain and loss. And they are not seeking a damaged dysfunctional woman, they seek the words, the actions of a priestess. And I plunge in, falling into trance and finding the right words, the right actions. Through my madness, their hurts are healed, their burdens lightened, even if only for a time. And when my work is done as priestess, I emerge to resume the work of rebuilding my life.

Along this long road, I have seen the carnage of lives. I have seen a gifted priestess who fell into madness almost fifteen years ago. She has yet to emerge. I have seen a gifted priestess walk away to chop wood and carry water. She has yet to emerge.

And me, I continue to try to balance, to juggle, to walk the talk. And I try to do good. I do good. I try to find that fulcrum point and balance there. I hope, I pray that I can balance there. I can not be less than both these things. And we should all know that I will probably fall again, and drop all of the things, and watch them shatter on the ground yet again, yet again. I just need to be patient. I need to trust the process. I need to remember that it does not matter if I fail, it does not matter if I fall. It only matters that I rise again when I do fall.

Weight Gain and Psych Meds: The Unholy Alliance

I have had the gamut of experiences with psych meds over the years, both the good and the bad. But a couple years ago, I was put on the controversial drug clozaril. I avoided the most dangerous and damaging of its side effects, but it nailed me with the weight gain. In a very short time my weight went from 120 lbs to 190 lbs. And it was awful.

I am still struggling with the weight daily. I do my best to diet, and I have begun doing the DVD called Gentle Yoga. But I’m still on several medications that cause weight gain. So the struggle is real.

My issues with the weight are not the issues that most women struggle with. I actually always wanted to be fat. Most of my closest friends are fat, and I love the sweep and curve of them. Of course, I didn’t get fat like that. Nope. Nope. Nope. I gained all that weight solely in my boobs and belly…no curvy plump arms and legs for me! Nope! I look like an olive with toothpicks stuck in it! I look like I am in my third trimester.

I wanted to be fat like this. I didn't get my wish.
Venus of Cupertino Ipad charger by Eaton London

The other thing is that most fat people I know grew fat over time, over months or years. I gained nearly 70 lbs in less than two months. I had no time to adjust to growing fat, I simply WAS fat in what seemed like the blink of an eye.

With no time to adapt to my new size and shape, I became even more awkward than I was before. Things I used to do with ease are now difficult or nearly impossible. I have to struggle to reach around my vast belly to put on socks and shoes. I leave toenail polish on for months at a time. Really, unless my youngest daughter visits and paints them, my toenails are a disgusting untended mess. I remain baffled at things like driving-how hard it is to fit my big awkward body behind the wheel. (I’m glad I have not had to fly anywhere!)

On my last visit to the psychiatrist, I proudly told him I was losing a little weight. I guess I was looking for praise or validation from him. Instead he looked at my medication list and told me I still should be gaining weight with my current medications. Then he said I was dieting too much! I felt crushed. I have fought, struggled, and, yes, suffered to lose 14 lbs, and here I was being told that I was dieting too much.

As a mental health patient, I have gotten pretty tough. I can stand the slings and arrows of outrageous fortune pretty well. I do not shy away from new treatments or diagnoses. But there is one thing I do not want. I do not want this psychiatrist to decide that I have an eating disorder. Patients with eating disorders get a lot of attention. They get the sort of attention that I do not want. I don’t think I have an eating disorder, not now, and not in the past.

I know, I know, from those of you who knew me then, after Tom died, I did stop eating, and my weight plummeted. I remember that too. That was not an eating disorder, that was despair and grief. After a few months I returned to eating normally, and my weight stabilized.

So here is a conundrum. If I continue with the diet and exercise, and I continue to lose weight, I run the risk of this doctor taking an interest in my weight loss. I fear getting an eating disorder label stuck to me. I do not know if my fear is rational. The doctor dropped that PTSD diagnosis on me with no warning, out of a clear blue sky. Psychiatrists are a notoriously tricky lot, and I do not wish to run afoul of this man. I might have mentioned before that I find him alarming. But on the other hand, I really do need to lose weight. We are poor. There is no money for even a trip to Goodwill to buy clothes that fit me. My closet is full of size 6 garments, but they do not fit my size 16-18 body. It is a real problem. At home I live in soft old stretchy sweatpants and pajamas, and that works okay. But since I began participating in my own mental health, my life is a constant whirl of appointments. And to go to appointments, you need to get dressed.

I see people in the waiting room of the therapist and the psychiatrist in pajamas and sweats all of the time. But I know that showing up in your pajamas is noticed. I know that not being dressed appropriately is a point of concern in mental health care.

Up until this week, I have been without a Winter coat. In Pittsburgh. In Winter. I am just too fat to fit my coats. In an awesome turn of events, my therapist found me a well-worn thin wool jacket. It won’t be super warm, but it is far better than the thin leather coat I have been wearing.

I obsessively watch the posts of my fat friends, hoping that they will say that they are taking old clothes to the Goodwill, but they never are.

So the struggles are real.

The fear is real.

The scary thing really is how profound the ‘side effect’ of clozaril was. The idea that taking a tiny pill twice a day could translate into 70 pounds in a little over a month is very scary to me. These psych meds are scary to me. I want them to help me. I have a deep need to believe that they will help me. I want to get better, and I need these pills to help me get on the right track.

But the pills are terrifying. They really are.

When you start swallowing the pills, you really never know who you will be, or how you will be when they kick in. I have had pills change my entire personality. This clozaril changed my entire body. I fear taking a pill that might change my entire soul.

I have a mantra. I say it daily, as often as I need to. My mantra is ‘consciousness is not fragile.’ But as I contemplate how easily the meds alter my consciousness I wonder if my mantra is true.

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

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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.

A Beautiful Ugliness: Musings on Being Ugly

My friend and teacher has been sharing some of her daily writing with me this week. She is writing about beauty, and her writing is captivating. All the beauty makes my head spin. I love beauty: beautiful music, beautiful art, beautiful architecture, you name it, if it is beautiful I probably love it. My entire being vibrates when I see beauty.

I think my love of beauty is because I am a homely creature. I was an actual ugly child, a really ugly adolescent, and as an adult, I’m still pretty ugly. I have pictures to defend these statements, trust me. That is not negative self-talk, or me running myself down. In a culture obsessed with beautiful women, I’m a proudly ugly one.

Photo of the Author
Photo by: B. Van Meter

It has been a long hard journey to embrace the fact that I’m never going to be pretty. But I have fought and learned how to be my own sort of ugly. It was not easy to get here. When you are in mental health care, you can find a support group for ANYTHING! Anything except being ugly. I guess it’s good that I’m no fan of support groups, because there is not one for me.

There are also not a lot of therapists who will let you alone about being ugly. I find this weird and distressing. I do not, I emphatically do not want a therapist who is gonna blow sunshine up my ass. Years ago if a woman said she was fat, some Little Mary Sunshine would immediately contradict her to tell her she had ‘big bones.’ No she didn’t. She was fat. And finally people are allowed to self identify as fat. Finally. So why can’t I self identify as ugly?

There is no good reason that I can not say I’m ugly. The fact of being ugly does not actually hurt my self-esteem. I have a few good points and I cherish them. Often I am at odds with my body. I have always felt like I was trapped in it. Truly, I want to live as a being of pure spirit-I would fly straight to my Egguns (beloved dead) and dance with them forever. My lack of love for my body is not based on anything as happenstance as its appearance.

I do think that there are a lot of circumstances where ugly people face some discrimination. That being said, I don’t think discrimination against the ugly is an insurmountable obstacle. If my looks don’t win you over, you are not alone, but I can win over almost anyone with my humor and intelligence. So I don’t worry too much about my looks putting me at a disadvantage.

The obvious exception to looks not being insurmountable is dating. As a heterosexual female, men expect me to display some beauty I do not possess. I am clever with my make-up brushes and my clothes, but I don’t get asked out very often. It would be very lovely to be dating someone, but I come equipped with the ‘baggage triple threat:’ I’m crazy, I’m ugly, and I’m weird. So thundering herds of eligible bachelors fail to beat down my door with predictable regularity.

But what does all this whinging about ugliness have to do with my struggles with schizophrenia?

A lot more than it should, sportsfans. A lot more.

There is no psychiatric harm in identifying oneself as ugly-unless you aren’t. (but that is someone else’s struggle, not mine) I should be able to discuss my ugliness with my treatment team, and have the fact be respected. But if I try it, I’ll end up in some self-esteem support group telling lies about new hairstyles just to escape. That is not fair.

There really is not anything wrong with my self esteem that I’m going to discuss on the internet, and what is wrong with my self esteem is wholly unrelated to being ugly.

We are all made up of layers and layers of facets like fine cut gems. Some facets are right on the surface, easy to see, possible to touch. But the facets that flash the brightest lie deep inside the gem. Some of those deep surfaces are bright and some are dark, but they all lie deep inside where surface contact will not disturb them.

The surface of my gem was poorly cut, the angles line up wrong to be harmonious to the eye. That is as it is. In my deeper layers, the lines are often jagged where they should be smooth. The lack of pleasing aspect on the surface is the ugliness the Gods gave me as a gift. The jagged lines that are deeper are the schizophrenia warping my light and darkness subtly so that I see a very different world than most. The same gem, two very different things.

And, yes. Yes. I did say that I consider my ugliness to be a gift from the Gods. And that is true. My surface is displeasing to the eye. I can rest secure in knowing that if someone loves me, they don’t love me for what is on the surface. I know that the very few people who love me love me on a very deep level, and I know I can trust that love to be load-bearing, because it has not reached my heart from a shallow place.

I will listen to anyone and everyone about balancing the schizophrenia, and I will try almost anything-from psych meds to psychotropics, I’ll listen and work to get better. That is a promise.

Just let me be ugly, I’m happier this way. That is a promise, too.