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.

The System Undermines its Desire for Us to be Compliant

In today’s mental health care, the patient is always coming up against the system. There is a sharp, painful dichotomy between the nurturing feeling of an appointment with a trusted doctor, therapist, or social worker, and the iron-clad unreasonable laws of the mental health system itself.

The Patient is often at odds with the mental health system, and their need to be compliant.
Image by: ifunny.com

I’ve had a couple weeks of butting heads with the system, and I have some good examples to illustrate my point.

But, first, I need to explain a central concept of mental health care: compliance. Compliance means exactly what it says it means. A mental health patient who is compliant takes all of their medications on time, every time; a compliant mental health patient arrives on time for every appointment. A compliant mental health patient gives 48 hours notice if s/he must cancel an appointment. A compliant mental health patient will always reschedule a cancelled appointment. These are the terms under which the patient may receive services. In many cases, my own included, non-compliant patients may be denied services. So, sadly the patients who most need help, but are not in a position to be very compliant can find themselves back at square one. I am glad to say that where I receive my services seems to be very flexible about accommodating patients’ needs and allowances appear to be made for people who are going through bad times.

However, in general, the terms of compliance do not offer flexibility. Even if your medication is making you sick to death, you take it, then whine about taking the medication and being sick to your therapist. Even if you live miles below the poverty line and rely on a cantankerous, un-inspected car to get to appointments, you go-even if you get a ticket you can not afford, you go. If the doctor gives you instructions on how to get your prescriptions refilled which deviate from the standard protocols, you comply, even if you come smack up against a brick wall of baffling administrative process. Mental health patients are often deemed worthy or unworthy to receive help based on their compliance.

Objectively, this seems fair. It seems to reward the patients who are working the hardest to get better. Unfortunately, the reality is quite different. In practice the system is nearly impossible to navigate for me, and I know that, comparatively speaking, I’m pretty high functioning. And nearly every other visit, I see patients at the breaking point from frustration, from fear, from poverty, or from pure D bafflement over how the system works. And remember, I just commended the system where I receive services for its outstanding flexibility. The realities elsewhere are much harsher.

Here are my personal examples to try to make this less abstract for you:

At my last visit with the psychiatrist, over two weeks ago, the psychiatrist ordered me to see my regular MD, to hand carry a copy of a recent EKG to the MD and get a clean bill of health before he would refill my prescriptions and add a new prescription for recurring nightmares. Seems reasonable enough. I was told to call the RN at the psychiatrist’s office to arrange my refills after I had seen the MD.

When I got to the psychiatrist’s front office, the trouble started. They could not find my chart. After they rooted and rammed all over the office, I was told that my chart had ‘probably’ been sent to another office to be ‘audited.’ So I had no copy of the EKG to carry to my MD, and now I had to worry about my missing chart. That chart is full of sensitive information, and I’m uncomfortable that 1)The System had NO idea where my chart was, and 2)The System has the authority (somehow) to send my chart ‘somewhere else’ for some person unknown to ‘audit’ and it is unclear what they are auditing the chart for. Not gonna lie here, I’m losing sleep over that chart still.

After my visit to my MD proved that I had a clean bill of health, I attempted to call the psychiatrist’s RN to renew my prescriptions. The front office will not allow me to speak to the RN on the telephone. All I may do is to leave a voicemail, and hope the RN will call. Two weeks later , three voicemails later and the RN has not called me, and my refills have not been submitted. I do not blame the RN. The message addressed three or four detailed fussy details applicable to different prescriptions. If I could have simply TALKED to her, where she could ask questions, and I could answer them, it could have been sorted. Instead she got the ‘term paper equivalent’ of a voicemail.  The front office informs me that the RN will not call, and that to get my refills, I need an appointment with the psychiatrist. I HAVE an appointment with the psychiatrist for when he wants to see me-in the latter half of March. But my prescription will run out in two weeks. This is called being between a rock and a hard place.

Example Number 2:

If I need to cancel an appointment with my therapist, I am expected to give a minimum of 48-hours’ notice, and to reschedule for the same week. Seems simple enough, right? In order to be seen for the aforementioned appointment with the MD, I needed to reschedule my therapist appointment. So I called. The Front Office-remember them? told me that my appointment had been cancelled, and that I could not reschedule as I had an appointment scheduled for the following week. (Actually it was today.)

Imagine my surprise last week when my therapist called to confirm the appointment I had cancelled four days prior. She had not been told that I called and cancelled, that I had not been allowed to reschedule.

So, here I sit. For the first time in my life really taking my recovery seriously, finally recognizing that getting better might just be my life’s work. And here I am being non-compliant on several fronts. And struggling not to be. Seeking a way to point out the brokenness of the system without sounding like a paranoid crazy person.

These systems are set up by the government, or by the hospitals ostensibly to protect some of society’s most fragile members. The office where my therapist and psychiatrist are located is an old school. It is a rabbit warren of offices that also serve the WIC program to provide nutritious foodstuffs to pregnant women, nursing mothers and small children. The same building houses a food pantry to feed the hungry. The same building provides free meals and enrichment activities to senior citizens living in poverty. And as I said, the building is a rabbit warren. Offices seem randomly placed, and signage is often minimal, unhelpful, or unclear. People are frequently simply not in the proper place. People do try to help, but not everyone knows where everything is, and sensible sounding advice can get you more lost.

And every other time I’m in there, or nearly every other time, someone is flipping out-either angry, or sad, or hurt, or frustrated, or confused. And I know that they serve people who have a high level of crisis, and I know that MH/MR clientele can be reactionary…but it can be really frustrating and stressful to be there even if you are not in crisis or meltdown mode.

It is not the people who provide the actual services-they are kind and compassionate people who go above and beyond to help. It is this system of efficient office personnel with their keyboards, and their clipboards. And their protocols of how to deal with every situation-protocols that are blindly followed instead of taking a moment to listen, then responding accordingly. The secretaries are nice people, but they are, shall we say…hidebound? These secretaries who are so quick to hang up the phone, so quick to mouth the words, ‘you can’t,’ ‘it isn’t possible,’ ‘we are not authorized to…’ Those words are automatic, they do not check, they simply apply the system’s walls.

It is not the end of the world. By enlisting the help of my therapist, I was able to see the RN in person, and all should be well with my meds. The therapist was also not surprised that she did not get word that I had cancelled my appointment. It was not the end of the world, nobody died, nobody cried. But it was stressful, and it was very frustrating. And I have a very real world fear of running out of all these pills.

Since I began my journey with mental health care over thirty years ago, the care has increased immeasurably in competence and in compassion. It is time that the systems that control and administer the caregiving also move into a more functional and compassionate model.

 

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.

 

PTSD: Something From the Psychiatrist

My new psychiatrist is an integral part of my new mental health team. He has a long Indian last name, so he is called Dr. Uma by everyone. He is so focused, attentive, and precise that I find him alarming,  but I think he is also very good at what he does.

A psychiatrist these days is not the old image. One does not lie on a couch and discuss one’s parents. No. You sit in a chair across the desk and the psychiatrist focuses on your symptoms. Dr. Uma fires questions at me that feel like they are being zapped out of a ray gun. Then he prescribes. I spend only about 20 minutes with Dr. Uma but it is much more intense than spending an hour with my therapist. After an appointment with him, I am shaky and weak, I only wish to lie down quietly and not be looked at for a time.

Two visits ago, Dr. Uma reviewed my medications and radically altered then. I was on a huge dose of seroquel, it did not help, it made me sleepy, it made me gain weight. I hated seroquel. The doctor had me quit the seroquel flat out that day, and prescribed geodon to start titrating up at once.

But before he wrote that prescription, and before I had decided to trust him enough not to kick at a medication change we both knew was going to put me through nearly a month of med Hell, Dr. Uma gave me something else: another diagnosis.

PTSD.

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

I guess I should have seen it coming, but, to me, it fell out of a clear blue sky.

To be perfectly honest, I am struggling with my new diagnosis. It feels like I didn’t earn it. PTSD is a warrior’s illness. I think of the soldiers with PTSD, and I feel unworthy to be diagnosed with it. It is true that I hate this (these?) war/s. But I honor and respect the warriors who are there fighting, those who risk their lives to obey orders and to defend their country. They did not make this war. I do not blame them. I would never scorn them. I will always honor our warriors.

Regardless of how I feel about it, the diagnosis is there, and I do think it is accurate. I have the recurring nightmares, I have the flashbacks. I do fall out of the here and now. I am perpetually being startled. If the slightest thing startles me, I jump, scream, and, sadly, if it is bad enough, I’ll wet my pants. And it doesn’t take much. My housemates have modified their behaviors so they don’t inadvertently sneak up on me. I wake from fevered dreams sweating and shaking. I know Dr. Uma is correct, I know I have PTSD…I just was not expecting a new diagnosis at this stage.

The good news is that the worst of the symptoms can be treated. The nightmares in particular can be treated. When Dr. Uma told me that, I nearly wept…not cried…wept. The only thing I can think of that would be better than not having the nightmares would be a letter from Hogwarts.

The bad news is that I have been having chest pain, and Dr. Uma will not prescribe the medications for PTSD until my regular doctor checks me out. I think I just have a touch of bronchitis, after all I live in Pittsburgh and it is Winter, and I smoke like a chimney, and in some bizarre turn of events, I took a little barefoot stroll outside the other night, and the housemates are both sick. So it is probably just bronchitis, but better safe than sorry, I suppose. I see the MD tomorrow.

Of course, there is a lot of anxiety about seeing a doctor for chest pain. Anyone would be nervous. And me? I’m pushing 50, smoke a lot, and my medications for the past 4 years have all had weight gain as a side effect. (And, believe me, I have gained weight!) Therefore, for the first time in my life, I’m also overweight. So I am worried. I’m having quite a few panic attacks, and my insomnia has shifted into high gear.

But if all is well with the MD, I’ll have the new medications, possibly before the end of the week. And new side effects. Since I don’t know the names of the new medications, I can’t research what side effects to expect. So I have stocked my nightstand with the OTC drugs that every psych patient uses to manage side effects. I put fresh sheets on the bed. I washed the two throws I keep at the foot of the bed because with my delightful hot flashes, often getting under the covers is too hot. In short, I am set up for a siege of new medication side effects.

I can not remember ever being so excited about a new medication. The hope of getting rid of the nightmares has filled me with giddy anticipation. The thought of getting a good night’s sleep-I simply have no words for that.

My insomnia is fueled by my fear of the nightmares. Often, I choose to stay awake, just so I don’t have the nightmares. I can stay awake for a couple of days at a time. That is bad for the schizophrenia, and when the schizophrenia is bad, my anxiety goes through the roof. Then my life feels so out of control that the depression kicks in hard from guilt and shame. It is the vicious cycle that creates the cage that is my life. Breaking one link in the chain feels like the start of freedom.

But this is a lot to take in.

The psychiatrist is the shaman of Western mental health. We expect him to divine our ills from the depths of his recorded notes. We expect him to shake his pill bottle rattles. We expect him to heal us body, mind, and spirit. He interprets our dreams. He probes the depths of our consciousness. He has no laboratory tests to guide him save testing blood levels of certain medications and vitamins. We expect him to walk through our damaged psyches and emerge with efficacious treatments. We expect him to fix our irreparable brokenness.

Our expectations of psychiatry are not fair. I try to balance psychiatry with spirituality. I pray daily, and I sit with my prayers waiting for blessings and answers from my Gods. (In my religion, they are called Orishas, but most people are not familiar with that word) My first set of dreadlocks did not take, so I am growing my hair to try again. This is based on an African idea that binding the hair can bind troublesome spirits to help stabilize a person. I am using all the tools my life has laid before me to find the road to wellness. So I try not to have unrealistic expectations of Dr. Uma.

But, right now, I do have unrealistic expectations of Dr. Uma. I daydream that this pill will stop the nightmares in their tracks. I daydream that this pill will break the chains of my illness, and that I will emerge from madness miraculously whole and sound. And I know better. I know it does not work like that. I know my expectations are ridiculous, and that I am about to be disappointed. I know I should be realistic.

But I’m not going to be realistic. These unrealistic expectations are part of my illness, I know that. But they also are my manifestation of hope. And hope is like a ray of sunshine in the darkness where I dwell. I know that, as always, the reality will not live up to my fantasy. But, for now, I choose to hope.

 

Rape and Schizophrenia Are Friends

So I’m not kidding around with therapy this time. I’m there to do the deep and hard work. I’ve been seeing this therapist since October, and we have done the easy stuff-religion, my life at Four Quarters then, my life with Pete now, and the people of those times who left a mark for good or ill. (Okay, nobody actually went into the ‘left a mark for ill’ department, but concluding that took a bit of sifting.)

So while working on this easy stuff the therapist and I got to know one another. We built a relationship that would enable me to do the hard work. I trust her a lot more than I trust most people. But I also know that I can not take therapy for granted. Medical Assistance pays my therapy bill, and they could decide to stop covering therapy at any time for any reason, so the therapist and I must go hard, because we never know how much time we have.

Last week, in my appointment I talked to the therapist in depth about the date rape that preceded my current derailment. I laid out what had happened in exacting detail. Continue reading “Rape and Schizophrenia Are Friends”

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.