Dear Failure of Systems (refer to my last post for details),
You suck.
Because of you, people are hurt.
Because of you, vulnerable families are torn apart.
Because of you, lives are ended and people become whispers of who they once were.
Fix yourselves. (Preferably sooner than later!)
I'm not making this shit up, and here is proof, as if you should really need it:
Below is a news article from the Globe and Mail on our system's most recent catastrophic failure.
Grisly killings expose system's failure
Hanging my head in grief,
O.
PS. I'm not asking; I'm expecting.
Tuesday, September 23, 2008
Monday, September 22, 2008
Dear Social Structures
Dear People Who Are the Policy Developers for Our Social Systems,
When you create criteria for your programs, it would be prudent to ensure that there are humans who actually fit into that box. And if so many don't fit into the box, it's possible you may need to adjust your criteria.
Please don't get defensive at the suggestion of change. I know a lot of time and money are invested in the development and implementation of social programs. Sadly, those who are responsible for developing those programs are often the ones who are least likely to need them. So yes, sometimes your policies are woefully inadequate, since the experience and education that would be required to develop adequate programs are not within your grasp. Despite the pejorative insinuation here, I would consider myself lucky to find myself bereft of such an education.
And yes, I feel comfortable telling you why your policies are insufficient to meet my needs. I'm sorry that your ego and education are incompatible with my experience. It's just that your rules affect my life. And who are you to dictate how I am to live? I have broken no laws by being diagnosed with a mental health condition, and so I expect, like every other citizens of this fine democratic country of ours, to be accorded the freedoms and privileges associated with my citizenship.
Goddam me and my uppity notions of inclusion and social equality, you may say. Goddam you and your discrimination, I say.
Furthermore, when someone comes to you for help, and you can offer none, be prepared to explain the next step in the same breath, so the person isn't left dangling in a chasm of despair, for their next step may be a leap into an unknown place... A place where they can never be found... A place they may never rise from if ever they are found.
And in that exchange, do not castigate that person for being inadequate both in sickness and in health. Being forced to bear the burden of illness was not my choice to make. Sadly, these kinds of things are written into the code of our being, and like cancers and other forms of hereditary illness, they are largely unavoidable, although I recognize they are possibly preventable. I worked hard to be as well as I am, and so pardon me for my imperfection. Pardon me for seeking you out and asking for help; pardon me for trying to accommodate this demanding blight that thrives in the dampest corners of my soul.
For what it's worth, I'm working to heal and to conceal it. I'm working hard to be like you... average. Know that it would be my greatest achievement to live out a sanguinely average life... but this seems as out of reach for me as it is to pluck the moon from its place in the universe. So please, spare me your cruelly upbeat rhetoric when I ask for help because we all know that appearances are deceiving. And for me, this type of deceit has become a carefully exercised art.
And so I beg you, when we feel every option within our sight has been explored, when all alternatives in our reach have been investigated, and when we wind up at the end of the chain of services with hungry bellies and empty eyes, please don't blame us for our ensuing self-destruction or deviance. If we can't have comforts of the flesh, at least spare us a little oblivion to fool our starving souls into believing they have been filled.
When we are promised everything, but given nothing, what other resort do we have besides deviancy or self-destruction? I'd love to know.
Trying to keep it together despite the odds,
O.
When you create criteria for your programs, it would be prudent to ensure that there are humans who actually fit into that box. And if so many don't fit into the box, it's possible you may need to adjust your criteria.
Please don't get defensive at the suggestion of change. I know a lot of time and money are invested in the development and implementation of social programs. Sadly, those who are responsible for developing those programs are often the ones who are least likely to need them. So yes, sometimes your policies are woefully inadequate, since the experience and education that would be required to develop adequate programs are not within your grasp. Despite the pejorative insinuation here, I would consider myself lucky to find myself bereft of such an education.
And yes, I feel comfortable telling you why your policies are insufficient to meet my needs. I'm sorry that your ego and education are incompatible with my experience. It's just that your rules affect my life. And who are you to dictate how I am to live? I have broken no laws by being diagnosed with a mental health condition, and so I expect, like every other citizens of this fine democratic country of ours, to be accorded the freedoms and privileges associated with my citizenship.
Goddam me and my uppity notions of inclusion and social equality, you may say. Goddam you and your discrimination, I say.
Furthermore, when someone comes to you for help, and you can offer none, be prepared to explain the next step in the same breath, so the person isn't left dangling in a chasm of despair, for their next step may be a leap into an unknown place... A place where they can never be found... A place they may never rise from if ever they are found.
And in that exchange, do not castigate that person for being inadequate both in sickness and in health. Being forced to bear the burden of illness was not my choice to make. Sadly, these kinds of things are written into the code of our being, and like cancers and other forms of hereditary illness, they are largely unavoidable, although I recognize they are possibly preventable. I worked hard to be as well as I am, and so pardon me for my imperfection. Pardon me for seeking you out and asking for help; pardon me for trying to accommodate this demanding blight that thrives in the dampest corners of my soul.
For what it's worth, I'm working to heal and to conceal it. I'm working hard to be like you... average. Know that it would be my greatest achievement to live out a sanguinely average life... but this seems as out of reach for me as it is to pluck the moon from its place in the universe. So please, spare me your cruelly upbeat rhetoric when I ask for help because we all know that appearances are deceiving. And for me, this type of deceit has become a carefully exercised art.
And so I beg you, when we feel every option within our sight has been explored, when all alternatives in our reach have been investigated, and when we wind up at the end of the chain of services with hungry bellies and empty eyes, please don't blame us for our ensuing self-destruction or deviance. If we can't have comforts of the flesh, at least spare us a little oblivion to fool our starving souls into believing they have been filled.
When we are promised everything, but given nothing, what other resort do we have besides deviancy or self-destruction? I'd love to know.
Trying to keep it together despite the odds,
O.
Monday, September 15, 2008
Trying to understand is not the same as understanding...
Dear People Who Want to KNOW,
I read this (excerpt below) in the Toronto Star this morning. This quote is derived from an article about a dad who longs to understand his daughter's experience.
For caring, exorbitant caring – about the meaning of a passing glance from a stranger, the look in a news broadcaster's eye on television, the fixed fired thoughts in one's head – is the psychotic's curse. ("Skinless" is a therapist's term for those who cannot tolerate stimulation.) "To depart from reason with the firm conviction that one is following it," reads a definition of madness from an 18th-century encyclopedia.
And, indeed, inordinate conviction is the chief warning sign of our delusions. For the patient to burn low, to be half asleep, to take no notice, is the medical goal – for the patient to live in a kind of emotional cordon sanitaire. Psychosis is the opposite of indifference. Indifference, therefore, would seem to be its logical cure.
The full article can be found here.
First, I think it is extremely important to say that I respect this father's committment to his daughter and her experience. I respect the raw emotions that his family went through. I respect that the father is trying to enter into his daughter's experience by himself participating in her treatments. And interestingly, I respect that he went so far as to try her medication... although, I know that in practice this is not recommended, nor is it necessarily safe.
My issue with the article is the simplification of the experience. The father seems to endorse ideology of an antipsychiatry and antimedication approach by suggesting that the fundamental purpose of medication is to create "indifference" in the person.
I would like to offer this father a different perspective, having myself crawled out of the long, dark tunnel that is known as psychosis: medication (at its worst) can produce indifference (lack of motivation, apathy, exhaustion, etc.), especially if the dose is too strong, and even more especially if the medication is a poor fit for the person. At its best medication produces the effect of organization.
Consider the neurological "causes" of psychosis: Dopamine is cascading through neurons at an unmitigated and uncontrolled rate. This neurotransmitter is partially responsible for the rate and strength of our transissions, and so the repercussions of this barrage are confusing for a person experiencing it. (Being high on pot feels a lot like the early stages of a psychotic break, by the way... the loose associations, the multiple layers of meaning in any given context, the sense of mental fog, etc. Interestingly, the "high" effect from pot is caused by dopamine cascading though your neurons.)
The problem is not that a person with psychosis "cares" too much about the events around them (suggesting that a person with psychosis is oversensitive), the problem is actually that a person with psychosis cannot control their attenuation of sensory stimulus around them.
The "average" person is able to control the stimuli around them by focusing their attention on the stimulus that requires attention in any given context. Generally this is a passive and almost unconscious process. In the "average" brain, a stimulus from the environment penetrates the neurons which then mobilize to organize the meaning within the context. For example, when walking on the street in a crowd, one generally understands that when they hear a siren, they need to stop to look around and see how they need to respond. And so despite the sounds in the crowd, despite the bustling of moving cars and people, despite the visual stimuli of light, and shapes of buildings and people and trees; the sound of the siren takes precendence above all other stimulus, and so one would most likely focus on that one stimulus and therefore act as necessary depending on the circumstances.
From my experience, the passive process of stimulus absorbtion, interpretation, and organiation is detrimentally impeded in a person with psychosis. A person with psychosis is unable to filter through and focus on a particular theme or element of the stimulus that exists in the sounds of the crowd, the siren, the glare of the sunlight, the red of the emergency vehicle. And not only are they neurologically "forced" to attenuate to all of any incoming stimuli at once, their ability to make sense of the stimuli is also altered.
For me, it wasn't that I cared in particular about what I was taking in around me; it was that I could not control what to take in and what not to take in. I could not organize my attention for the life of me, and so all at once, everything became significant, even the things that were completely irrelevant to the context.
During a psychotic break, a brain that is unfamiliarly overridden with stimuli (caused by an influx of dopamine) also recieves a second punch: Not only does dopamine open the floodgates to hyperstimulation, but this chemical also primes the brain to make connections in an effort to "organize" those stimuli. And so in our human brains that are innately compelled to create order and to explain chaos, we now begin to make bizarre associations and start to manifest delusions in a very literal attempt to organize the influx of information.
Let's make no mistake, it's not so much that people with psychosis are more attuned, morally weak, sensitive, or lazy, or stupid, or any of the pervasive negative myths that tend to circulate: A person living with a psychotic brain is a person who is living with an overworked brain. A brain that won't stop revving its engine, so to speak.
From what I understand about biology, all organisms need rest. And rest often involves having a "quiet" brain. It was my brain's inability to passively organize the intake of stimulus that made up the greater part (and the most exhausting part) of my psychotic experience. My brain needed help to quiet itself so that it could better work through the process of organization. Part of helping my brain to be quiet was taking medication, but another significant part was ensuring that my environment allowed my brain some quiet time.
Futhermore, there was a lot of "training" involved... but that's complicated, and perhaps the subject of another post.
Organizing for clarity,
O.
I read this (excerpt below) in the Toronto Star this morning. This quote is derived from an article about a dad who longs to understand his daughter's experience.
For caring, exorbitant caring – about the meaning of a passing glance from a stranger, the look in a news broadcaster's eye on television, the fixed fired thoughts in one's head – is the psychotic's curse. ("Skinless" is a therapist's term for those who cannot tolerate stimulation.) "To depart from reason with the firm conviction that one is following it," reads a definition of madness from an 18th-century encyclopedia.
And, indeed, inordinate conviction is the chief warning sign of our delusions. For the patient to burn low, to be half asleep, to take no notice, is the medical goal – for the patient to live in a kind of emotional cordon sanitaire. Psychosis is the opposite of indifference. Indifference, therefore, would seem to be its logical cure.
The full article can be found here.
First, I think it is extremely important to say that I respect this father's committment to his daughter and her experience. I respect the raw emotions that his family went through. I respect that the father is trying to enter into his daughter's experience by himself participating in her treatments. And interestingly, I respect that he went so far as to try her medication... although, I know that in practice this is not recommended, nor is it necessarily safe.
My issue with the article is the simplification of the experience. The father seems to endorse ideology of an antipsychiatry and antimedication approach by suggesting that the fundamental purpose of medication is to create "indifference" in the person.
I would like to offer this father a different perspective, having myself crawled out of the long, dark tunnel that is known as psychosis: medication (at its worst) can produce indifference (lack of motivation, apathy, exhaustion, etc.), especially if the dose is too strong, and even more especially if the medication is a poor fit for the person. At its best medication produces the effect of organization.
Consider the neurological "causes" of psychosis: Dopamine is cascading through neurons at an unmitigated and uncontrolled rate. This neurotransmitter is partially responsible for the rate and strength of our transissions, and so the repercussions of this barrage are confusing for a person experiencing it. (Being high on pot feels a lot like the early stages of a psychotic break, by the way... the loose associations, the multiple layers of meaning in any given context, the sense of mental fog, etc. Interestingly, the "high" effect from pot is caused by dopamine cascading though your neurons.)
The problem is not that a person with psychosis "cares" too much about the events around them (suggesting that a person with psychosis is oversensitive), the problem is actually that a person with psychosis cannot control their attenuation of sensory stimulus around them.
The "average" person is able to control the stimuli around them by focusing their attention on the stimulus that requires attention in any given context. Generally this is a passive and almost unconscious process. In the "average" brain, a stimulus from the environment penetrates the neurons which then mobilize to organize the meaning within the context. For example, when walking on the street in a crowd, one generally understands that when they hear a siren, they need to stop to look around and see how they need to respond. And so despite the sounds in the crowd, despite the bustling of moving cars and people, despite the visual stimuli of light, and shapes of buildings and people and trees; the sound of the siren takes precendence above all other stimulus, and so one would most likely focus on that one stimulus and therefore act as necessary depending on the circumstances.
From my experience, the passive process of stimulus absorbtion, interpretation, and organiation is detrimentally impeded in a person with psychosis. A person with psychosis is unable to filter through and focus on a particular theme or element of the stimulus that exists in the sounds of the crowd, the siren, the glare of the sunlight, the red of the emergency vehicle. And not only are they neurologically "forced" to attenuate to all of any incoming stimuli at once, their ability to make sense of the stimuli is also altered.
For me, it wasn't that I cared in particular about what I was taking in around me; it was that I could not control what to take in and what not to take in. I could not organize my attention for the life of me, and so all at once, everything became significant, even the things that were completely irrelevant to the context.
During a psychotic break, a brain that is unfamiliarly overridden with stimuli (caused by an influx of dopamine) also recieves a second punch: Not only does dopamine open the floodgates to hyperstimulation, but this chemical also primes the brain to make connections in an effort to "organize" those stimuli. And so in our human brains that are innately compelled to create order and to explain chaos, we now begin to make bizarre associations and start to manifest delusions in a very literal attempt to organize the influx of information.
Let's make no mistake, it's not so much that people with psychosis are more attuned, morally weak, sensitive, or lazy, or stupid, or any of the pervasive negative myths that tend to circulate: A person living with a psychotic brain is a person who is living with an overworked brain. A brain that won't stop revving its engine, so to speak.
From what I understand about biology, all organisms need rest. And rest often involves having a "quiet" brain. It was my brain's inability to passively organize the intake of stimulus that made up the greater part (and the most exhausting part) of my psychotic experience. My brain needed help to quiet itself so that it could better work through the process of organization. Part of helping my brain to be quiet was taking medication, but another significant part was ensuring that my environment allowed my brain some quiet time.
Futhermore, there was a lot of "training" involved... but that's complicated, and perhaps the subject of another post.
Organizing for clarity,
O.
Thursday, September 4, 2008
Memories of My Era: The Age of Turmoil
Dear People who Sell Fear (and Those who Buy It),
When I hear people describe or reminisce about times gone by, the say things like, "It was the age of innocence!" or "It was the era of the enlightenment!" or "It was the Quiet Revolution!"
It seems that the days of yore have a lot of positive ascriptions. And I wish I would be able to remember my history with as much reverence.
Unfortunately, I don't think I will be able to have a positive regard for the days of my youth. The times I have grown up in are times of confusion, frustration, and of deep dark closets creaking open.
In my short life-span on Earth I have seen major advancements in technology, and I have witnessed how it has torn us apart (as it paradoxically unites us in a vast network). These advancements have motivated people to question our human capacities and motivations; as we now, like never before, have a capacity to do the work of the gods.
I have seen how the scope of war has changed. It seems that wars are just easier to initiate, since all we really need to do is push a few buttons and move around a few big toys. And it seems that wars and strife have become a tool to suit economic needs instead of relieving oppression and promoting freedom. (Although, I'm sure a cynic could argue that most wars, in the end, are about economy, and always have been.)
Relating to the issue of war, North America is currently suffering as the economy reorganizes itself around emerging countries who are introducing new competition; thus destabilizing the status quo. All political figures recognize this as a period of transition, and all are scrambling for control so that their nation will wind up at the top of the heap at the end of the day. (Whenever that comes!) And in their scramble for economic success; leaders are engaging their citizens in battles at home and abroad that are exhausting and tormenting their people.
I'm now watching two countries endure elections. Elections that have major consequences for all. And as I watch the media coverage, all I can see is that the candidates are more interested in pointing out why their opponents are bad choices, instead of why their own candidacy is the good choice. In this, I see our fellow countrymen more divided than ever, and more rigid in opinion and ideology than ever.
To add to the list, political scandal and health and environmental crises compound the problems enough to whip the ordinary citizen into a froth of fear.
It seems the time of innocence is lost; and that our modern era of technology that was once hailed as the new enlightenment has come with a heavy burden: Change. And with change, comes turmoil. Welcome to the age of change; welcome to the era of turmoil.
Hiding behind my hands until it's over,
O.
When I hear people describe or reminisce about times gone by, the say things like, "It was the age of innocence!" or "It was the era of the enlightenment!" or "It was the Quiet Revolution!"
It seems that the days of yore have a lot of positive ascriptions. And I wish I would be able to remember my history with as much reverence.
Unfortunately, I don't think I will be able to have a positive regard for the days of my youth. The times I have grown up in are times of confusion, frustration, and of deep dark closets creaking open.
In my short life-span on Earth I have seen major advancements in technology, and I have witnessed how it has torn us apart (as it paradoxically unites us in a vast network). These advancements have motivated people to question our human capacities and motivations; as we now, like never before, have a capacity to do the work of the gods.
I have seen how the scope of war has changed. It seems that wars are just easier to initiate, since all we really need to do is push a few buttons and move around a few big toys. And it seems that wars and strife have become a tool to suit economic needs instead of relieving oppression and promoting freedom. (Although, I'm sure a cynic could argue that most wars, in the end, are about economy, and always have been.)
Relating to the issue of war, North America is currently suffering as the economy reorganizes itself around emerging countries who are introducing new competition; thus destabilizing the status quo. All political figures recognize this as a period of transition, and all are scrambling for control so that their nation will wind up at the top of the heap at the end of the day. (Whenever that comes!) And in their scramble for economic success; leaders are engaging their citizens in battles at home and abroad that are exhausting and tormenting their people.
I'm now watching two countries endure elections. Elections that have major consequences for all. And as I watch the media coverage, all I can see is that the candidates are more interested in pointing out why their opponents are bad choices, instead of why their own candidacy is the good choice. In this, I see our fellow countrymen more divided than ever, and more rigid in opinion and ideology than ever.
To add to the list, political scandal and health and environmental crises compound the problems enough to whip the ordinary citizen into a froth of fear.
It seems the time of innocence is lost; and that our modern era of technology that was once hailed as the new enlightenment has come with a heavy burden: Change. And with change, comes turmoil. Welcome to the age of change; welcome to the era of turmoil.
Hiding behind my hands until it's over,
O.
Wednesday, September 3, 2008
Some things I wish I knew years ago...
Dear People who Suffer from Side-Effects Like Nausea, Dry-Mouth, Tiredness, and so on,
When I was first diagnosed over 10 years ago, nobody really told me much. Mind you, I think I was pretty young, and so I'm going to optimistically believe that they just didn't want to burden me with more than I was already dealing with.
I was put on medication pretty much within days of my diagnosis, and while it was clearly explained that there would be side-effects, there was never much followup about what that would mean, and where I could go to find help for my side-effects.
One of the first side-effects I noticed was hunger... I always had a low grade rumble in my belly that felt better when there was food in it. I think this side-effect exacerbates the weight gain problems that happen in a lot of people who take atypical antipsychotics.
My solution for this rumbling was to eat... all the time... but to eat food that had super high amounts of protein - and just to snack perpetually while avoiding large meals. (Since I was feeling consistently fullish from my perpetual snacking.) Luckily, my solution worked, since I managed to combat the rumbles, and I didn't gain significant amounts of weight.
Another negative effect of my medication was sleepiness. I was so tired all the time. My solution was twofold: For many years I arranged my schedule to start my dater later than everyone else so that I could sleep a little longer and to take an afternoon or morning off from school or work during the middle of the week so that I could catch up on sleep. This worked for me as a student and as a part-time worker, but has some pretty obvious limitations in the 9 to 5 working world.
The side-effect that bothered me the most was dry mouth. Because of dry mouth I have had problems with dental decay and with canker sores.
Little did I know up until about a week ago that there are actually products that you can use to help ease dry mouth and its associated problems. Why on earth did no one tell me this?
I remember telling my family doctor and my psychiatrist about dry mouth problems. And I know that more than one dentist pointed out that I may have dry mouth due to some of the things they saw. So why did not one of these health care specialists think to inform me about the things that were available to help this.
As a poor university student I often had to gather my pennies together so that I could get dental work to repair the damage caused by "insufficient oral lubrication." Now as an adult without dental coverage, I find myself still having to pay for dental problems that began long ago.
I really wish that someone would have asked me long ago about my side-effects. I wish they would have been specific in their questions. And mostly, when I complained, or when they noticed something was wrong, I really wish they would have taken it upon themselves to inform me of the things I could do to help make my life easier and more comfortable.
There is a lot of self care that is required when you have a problem of mental health. And sometimes it's just almost too much to bear to deal with the disease itself (and the discrimination issues it often carries). Why have I had to deal with the additional time-consuming burden of experimenting with schedules/organization/products when this information is out there, but just not readily available to me?
Is it time for a What to Do When You're Expecting (A Bout With Mental Health Problems) handbook for psychosis and/or other conditions?
Seriously. Shit. So much of my time and money wasted on problems that could have been solved before they even started!
Tucking her pennies away for another cavity,
O.
When I was first diagnosed over 10 years ago, nobody really told me much. Mind you, I think I was pretty young, and so I'm going to optimistically believe that they just didn't want to burden me with more than I was already dealing with.
I was put on medication pretty much within days of my diagnosis, and while it was clearly explained that there would be side-effects, there was never much followup about what that would mean, and where I could go to find help for my side-effects.
One of the first side-effects I noticed was hunger... I always had a low grade rumble in my belly that felt better when there was food in it. I think this side-effect exacerbates the weight gain problems that happen in a lot of people who take atypical antipsychotics.
My solution for this rumbling was to eat... all the time... but to eat food that had super high amounts of protein - and just to snack perpetually while avoiding large meals. (Since I was feeling consistently fullish from my perpetual snacking.) Luckily, my solution worked, since I managed to combat the rumbles, and I didn't gain significant amounts of weight.
Another negative effect of my medication was sleepiness. I was so tired all the time. My solution was twofold: For many years I arranged my schedule to start my dater later than everyone else so that I could sleep a little longer and to take an afternoon or morning off from school or work during the middle of the week so that I could catch up on sleep. This worked for me as a student and as a part-time worker, but has some pretty obvious limitations in the 9 to 5 working world.
The side-effect that bothered me the most was dry mouth. Because of dry mouth I have had problems with dental decay and with canker sores.
Little did I know up until about a week ago that there are actually products that you can use to help ease dry mouth and its associated problems. Why on earth did no one tell me this?
I remember telling my family doctor and my psychiatrist about dry mouth problems. And I know that more than one dentist pointed out that I may have dry mouth due to some of the things they saw. So why did not one of these health care specialists think to inform me about the things that were available to help this.
As a poor university student I often had to gather my pennies together so that I could get dental work to repair the damage caused by "insufficient oral lubrication." Now as an adult without dental coverage, I find myself still having to pay for dental problems that began long ago.
I really wish that someone would have asked me long ago about my side-effects. I wish they would have been specific in their questions. And mostly, when I complained, or when they noticed something was wrong, I really wish they would have taken it upon themselves to inform me of the things I could do to help make my life easier and more comfortable.
There is a lot of self care that is required when you have a problem of mental health. And sometimes it's just almost too much to bear to deal with the disease itself (and the discrimination issues it often carries). Why have I had to deal with the additional time-consuming burden of experimenting with schedules/organization/products when this information is out there, but just not readily available to me?
Is it time for a What to Do When You're Expecting (A Bout With Mental Health Problems) handbook for psychosis and/or other conditions?
Seriously. Shit. So much of my time and money wasted on problems that could have been solved before they even started!
Tucking her pennies away for another cavity,
O.
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