So. So I was lucky enough to land a phlebotomist job that pays handsomely. I felt very blessed by the-literally-hundreds of prayers and well-wishes that supported me through the interview process. But the job has a major drawback. I travel to different nursing homes to draw blood. My daily commute is now 177.87 miles.
That’s a lot of driving. And let me tell you a secret, sports fans: I hate to drive. Driving gives me panic attacks. And these nursing homes are deep in the country, out where the cell phone doesn’t ring. If anything goes wrong, I’m totally on my own. That does not help the panic attacks.
And I’m driving twisty turn-y back country roads, so getting lost is something that happens, too. (But less today, as my route is finally getting into my muscle memory.) But, needless to say, adapting to my new job has been stressful. Highly stressful. Did I also mention that I need to stick patients very quickly to stay on schedule? or that I must fight morning traffic to get back to our office in Pittsburgh to drop off the blood? Yeah, that, too.
So I had to think of ways to make the drive less stressful.
Last night I listened to J. S. Bach Chorales and said the rosary over and over. I focused on the Sorrowful Mysteries, if you are interested. It helped a great deal. My dear friend and teacher suggested I give the Luminous Mysteries, instated by Pope John Paul II a whirl, too. I think I shall look them up and give them a try.
But trying to outwit my anxiety makes me think of how anxiety works. Anxiety thrives when we fall too deeply into ourselves. It thrives on silence and solitude. And anxiety loves the darkness. Saying the rosary lifts me up out of myself, it lifts my spirit up. The darkness ceases to be ominous, it becomes close and holy darkness. The silence, when filled with prayer and contemplation, ceases to menace. The solitude of my drive becomes nurturing.
As spiritual practice goes, saying the rosary is not particularly rigorous, but it is enough. And it nourishes the parts of me that still adore the Roman Catholic Church. Tonight to feed my Pagan parts, I shall pull a card from my beloved Stone Circle Oracle Deck and contemplate that while driving.
Anxiety is such a beast for so many of us, and there are very few simple fixes. I’m grateful I’ve stumbled upon something that works for me. I’m trying very hard to let my hopes outweigh my fears as I struggle again to rejoin the land of the living. I really feel that I have walked that Proverbial ‘Valley of Shadow’ and I finally feel that I am beginning to see a light.
I am placing so much hope in that faint light. And in J. S. Bach, but we know he stands up well.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Like everyone, I have friends. They are a cynical smart nerdy bunch in person. When we get together witty nihilism is on the menu. Our sense of humor is pretty dark. And we think we are a riot. It is great. But then we all go home.
Like everyone else, we keep in touch over social media. And once the internet gets involved in something, it quickly gets messed up. My snarky inappropriate friends plug in their laptops, and they plug into some kind of cosmic cotton candy machine.
Every day I’m bombarded by news feeds of cute kittens, cute bunnies, and uplifting thoughts. All from a group of folks who can spend an entire night joking about The Aztec Ass Bellows (a real thing-but I can not in good conscience call it recommended reading) We joke about skin conditions in person, on the internet I get beautiful pictures of rainbows and fractals and rainbow fractals.
My friends are Dr. Feelgood & Mr. Hyde.
And I don’t mind, really I don’t. I read all the sweetness and light. There is often good stuff in there. I watch any and all video of cute animals. That is always good stuff.
But lately I notice that the memes are encouraging me to ‘let go of fear’ in one way or another. I’ll let go of fear right after I give away my dog (filed under: Never)
Fear is my constant faithful companion. Sturdy and steady, always at my side, protecting and guiding me. Fear reminds me that the stove is hot. Fear tells me not to push stuff into the food processor with my finger. Fear reminds me that I am too clumsy to hurry on stairs. I have no war with fear.
My war is with anxiety.
Anxiety is an electron cloud that circles my head constantly. It grabs onto everything. Someone is 5 minutes late? Fear grins and suggests another cup of coffee. Anxiety gets busy as the coffee brews. Anxiety promptly suggests 3 things (anxiety is an over achiever) They got hit by a bus! (thanks mom) They are not even coming over, they actually hate you! (Thanks school bullying) The Liberty Bridge collapsed! They died in horrible flames and drowned, too! It’s all your fault! If they were not coming to see you, they’d be safe! Wow. Just wow. I don’t even know who to blame for that one.
It is ridiculous. Pointless, baseless, and, frankly, silly. I can see that. Or most of me can see that. The rest of me is watching vivid footage of a burning car full of drowning people blaming me. Usually, using good and well-practiced technique, I can fend off a panic attack. But my hand will shake, and I’ll probably be sweating a bit.
And it is something that happens multiple times every single day. I lead a very quiet very secluded life, not many people visit, and I rarely leave the house. So there are not a lot of easy targets for the anxiety. My anxiety is thrifty. It can find senseless upset in stuff that is 10, 20, 30 years in the past. My anxiety will hammer a point into dust, and keep pounding the dust trying to make liquid. Dealing with this kind of anxiety is a pain in my dupa.
But I can and do deal with it. Friends who arrive 5 minutes late are not examined for signs of recent flaming drowning. Nor do I weep and dramatize my fears for them. (Unless it is so spectacularly ridiculous that it will end up being funny-in that case, it’s Game On!)
If this is all the anxiety can do, I can still function. I think everyone probably experiences some of this type of anxiety to some degree, I think it is a result of caring for other people that we worry about them to an absurd degree.
Sadly, my anxiety mostly focuses on stuff that is less concrete. Stuff where it is much harder to reason my way through. It likes to wait until bedtime and just toss something random at me…something like, ‘you are totally past the age where anyone will ever love you again’ I can just kiss a good night’s sleep good-bye after that.
It is a sly concept. Basically, I have given up on trying to find love. If it finds me, I promise to feed it and pet it. And I do keenly miss it. But looking for love is one misery right after the other, and my life is complicated enough. So these sideways little digs into a wounded place are very hard to combat. I can’t tell it I have a date, I don’t. I can’t tell it I’m looking, or trying. I’m not. My best shot is telling my anxiety that miracles happen. My anxiety finds my premise specious.
Anxiety has a limitless arsenal. My poverty, my looks, my trusting both a doctor and a government process, my age…it just goes on and on. And it often feels like anxiety is in the driver’s seat.
I use all my tools from therapy. It is like charging a machine gun nest armed with a rubber knife.
There are medications which have helped in the past, but there is no money for a doctor visit for me right now, or any time soon, and the pills are expensive.
I think of this process as ‘The Insanity Sit and Spin’
And I sit here and spin. Thankfully, the beadwork still slips through my fingers and becomes art. Thankfully sometimes people buy the art, and gratefully I can buy some groceries. And my good friend fear flips anxiety the bird and reminds me to be careful of crazy drivers in parking lots. It is holiday season here in the ‘burbs, after all.
It is very rare at this point for me to go anywhere. But, in less than a week, I am going to go somewhere. It is very exciting and very scary. But I am going to go camping with my church in the beautiful mountains of southern Pennsylvania. I’m going to do what I can to help my church do what it has been doing for the past 19 years-raise standing stones.
Yup. Standing Stones. Building a stone circle. And this will be the twentieth year. And being there means a lot to me, and I am humble and grateful that I can go.
But there is a lot to deal with before I can walk out that door.
Before we even get into the reality of an agoraphobic schizophrenic going anywhere there must be the means to do so. And currently the car is being a poot. It has refused to pass inspection, and is just hanging out at the garage. The garage is being frightfully casual about getting us an estimate on fixing the car. Like any person, I need to know how much it will cost to fix the car, and when they will be done. But the garage keeps not calling.
Mr. Sweetie is trying to call the garage, but all they say is that they will call back. Then they don’t call back. They have had the car since Tuesday morning, and it is now noon on Thursday. It seems like they would at least be able to tell us how much this is going to cost by now.
I’m trying not to be paranoid. I’m trying not to take it personally. I am trying very hard to not freak out. On the inside, there are armies of voices swirling around screaming that I’ll never get to go, that the garage isn’t calling because they have no intention of fixing the car, that it is somehow all my fault.
On the surface, I am trying to pack my things, and trying to get mentally ready for the trip.
Leaving the house is a big deal for me these days. I have that bad schizophrenic magical thinking. Truly, I feel that if I do every single thing perfectly, absolutely perfectly, then nothing will go wrong.
I make bargains with the Universe…’ok, ok, I won’t take ANY unhealthy snacks at all…now please make the car ok.’ Unsurprisingly, the Universe sees no correlation between my unhealthy snacks and compelling the garage to fix my car. And the rational parts of my brain understand that. The rest of my brain is like a swarm of hornets on krokodil.
Some of the irrationality is *actually* rational, too. The weather is a huge factor. In past years we have shivered, sweltered, and even entertained a large hurricane. (and sometimes in the same 5 days) For comfort and function, it is necessary to pack all of the things.
And all of that does not even begin to touch on the emotions, fears, joys, trepidation, and panic about being outside, about being with my tribe, my friends, my family.
And none of that addresses the underlying spiritual compulsion to go.
That spiritual compulsion is the driving force behind all the rest.
There is not a lot of support in Western Psychiatry for schizophrenics with spiritual compulsions. In fact, my experience has demonstrated that most therapists will do anything in their power to deflect the schizophrenic from religious impulse.
I understand that they have concerns, and evidence to support those concerns. I do appreciate that fact. I ‘get’ that there is no way that they are going to believe that my voices are not urging me to some atrocious act in the name of some deity-theirs, yours, mine…it doesn’t matter. I understand their concerns.
But I do not share them.
I live my life with a lot of darkness and confusion. In spite of it, I try to be good, and to do good. I am compelled to reach up and out of myself, to try to touch the light.My life requires more religion and less medicine. Somehow, this trip is going to work out. Somehow, when those Stones Rise, I’ll be there.
…but that means that the garage better call…
If you want to know more about Stones Rising or Four Quarters, check out www.4qf.org
An often repeated catchphrase of RuPaul, one of my very few celebrity heroes. At least, it is the second half…the whole line is “If you can’t love yourself, how the Hell you gonna Love Somebody else?”
I don’t know, I don’t know.
Do not the fuck even start in on me about loving myself. I have tried very hard for a very long time to do so. There’s no future in it. I don’t find myself lovable in the tiniest detail. And despite all the ‘Yay! Go! Me!’ that our culture crams down our throats every single day, I am deciding to accept that I find myself utterly unlovable. I am deciding to be okay with that.
I do have some very nice qualities, I can see that. They don’t amount to enough to make me lovable. As some people loathe coconut or lima beans, I loathe me.
For years, I followed all the perky advice of therapists and counselors. I made lists of my positive traits. I spoke affirmations. I read so many self-help books that Deepak Chopra would gag. I gave 110%. And now I am over it. So over it. I think I can find more useful applications for my time.
For me it boils down to that central question…if I can’t love myself, can I actually love someone else?
I think I can. I believe I do. I would charge grizzly bears for my daughters. I have done without a fair amount in trying to see that they did not have to do without very much. Neither of my girls would probably rate me as a good or great mother. But I have no doubt that they don’t lose any sleep wondering whether I love them. With every fibre of my being. Don’t believe me? Your choice, but try to hurt one of my kids at your peril.
I have a tribe of friends. Do I love them? Do they know I love them? Probably it depends on the friend, or the day. When I am at my worst, I retract as deep into myself as I can. I’ll quit talking to people for, literally, years at a time. Some friends do not appreciate this tendency. And I appreciate that it hurts them, alienates them, and angers them. But this is me. Like a bear, I need to hibernate. I need to go deep into my cave and listen to the voices, see what they have. But that cave belongs solely to me. It is not a place of sharing. There is almost nothing in life that I won’t give you, or share until I have none left…but that cave is mine, and mine alone.
My greed of this small dark place is not a miser’s greed. I do not retreat to gloat over some wealth. I go there to wound and be wounded, to suffer, to bleed, to die over and over and over again. You don’t need to go in there. It smells bad. The atmosphere is not healthy.
So, yeah. I love my friends. And I think they love me. At least most of the time. But there is a thing I do, and will keep doing that just pisses them off. Trust me, I beat myself bloody over pissing them off and hurting their feelings. And I apologize, but I know I’m a dreadful friend.
Finally, there is this man who lives here.
I don’t usually know why the man stays.
I’m crazy about him, I guess that is a plus, but it is weighed down significantly by the fact that I am crazy. I do all I can for him, but at this stage, that isn’t so much…when I had money, an income, I could try to better spoil him. Now, it is all I can do to try to cook for him, and do little things around the house.
I struggle to need as close to nothing as I can, to not want…I’m not sure that is really much incentive, but what else can I offer? This relationship reminds me of those terrifying mirror mazes on the Boardwalk when I was a kid…all I see no matter how I look, no matter where I look is my own distorted images.
He might love me with all his heart. On my best days, I like to think so, and feel warm and safe with that. Most days are not best days, and those days, it seems more that he patiently tolerates me, the grinding poverty, all of this…because he currently has no better option. Honestly, if I thought he had a better option, I would support him in taking it. I have before, just historically, his better options haven’t been better…
I never expect to feel as secure in any relationship as I perceive a non-schizophrenic self-loving person might feel. I’m generally okay with my life existing in a question mark. Perhaps, today, I am weary. Perhaps today, I would give anything for a hot shower, but I also know to not worry too much.
Because I rarely wear a tinfoil hat, because I am possessed of a certain ability to manipulate words, I have brief ability to pass as being somewhat mentally stable. That is a fairly mixed blessing.
The past week or so has been a perfect example.
I deeply cleaned my room (it was disgusting) and enlisted my long-suffering partner to help me move all of the heavy furniture. On just that information, it sounds rational. If you also add in that I can now see out of a window instead of looking into a darkened corner, it could pass as a step in the right direction. It sounds like a rational, mentally healthy choice.
But they don’t classify schizophrenia as a thinking disorder for no reason.
My awesome view out the window is of the very close wall of my neighbor’s house, and I get the benefit of seeing the starlings walking around on top of the window air conditioner. These birds give me the creeps. So I promptly added a light-blocking insulated opaque shade behind the portieres. Now I just hear the starlings walking around on the air conditioner, so I ‘have to’ go look at them repeatedly.
Moving furniture into a more dissatisfying configuration is not a symptom of mental illness; rather, it seems part of the human condition. In Pittsburgh, it seems to be even more so. These funny old houses have nothing but odd shaped rooms.
The other fact of my remodelling is a bit more daft. The vent for the central air conditioning now is poised to shoot right under my headboard, and arctic blast the top of my bed. Really, only a crazy person would have put their bed in front of this taste of Siberia.
There is a window air conditioner as well as central air in here because the previous configuration of furniture required a huge dresser to block the central ac vent. And I’m menopausal. With hot flashes. In a modern house, I could just close the central ac vent and use the window unit. But this is the Mad House. The vent in question is one of those huge ornamental vents, lacking those modern clever levers.
So I’m black and blue and sore. And I guess I have to move it all again.
Still, I did something. So, that might count as progress. But it doesn’t.
I thought I had a doctors appointment today. Unfortunately, I had a doctor’s appointment yesterday. More unfortunately, I was not at that appointment. This is not going to put me in a good position to try to convince the doctor that trying life without meds has some potential.
So, I’ve spent the past 18 hours flipping out in a very quiet way. This means that I’ve spent a huge sum of time picking and digging at my skin. I’m all welted and bloody. I’ve chewed the hell out of my lips and tongue. And in a little less than an hour, I need to call the doctor’s office to try to reschedule. Rationally, I know they are going to charge me a missed appointment fee that I can’t afford, and reschedule the appointment.
That rational understanding of what is going to happen has been hiding in the back of my mental junk drawer for hours. I really think my doctor is going to dump me over this. I’m not handling that thought very well. In fact, even though it looks like there has been positive progress in the past week, it is actually a frantic version of the flight part of fight or flight.
A little over a week ago, I had what seemed like a brilliant idea. I decided to privately try journalling my earliest memories of the voices. Just a private exercise to gain some clarity. The voices didn’t care for that at all. I’m not thinking very clearly. This leads to moving my bed into the Siberian wilderness of the air conditioning vent, blacking out the window that I moved the bed so I could see out of, and missing a doctor’s appointment.
I’ve also accidentally tasted the dishwater a couple times from thinking about checking the seasoning of dinner while doing dishes.
Optimism concerning life without meds is quite low right now.