Over and over I encounter people who are totally confused about what schizophrenia is and what causes it. I want to discuss some of these wrong ideas here...The sooner people become educated about this disease, the sooner we will stop encountering stigma and misinformation. I would say that this is one of the hardest things about this disease. When someone asks "What's wrong with you?" the last thing I want to tell them is that I have schizophrenia. SZ is like a dirty secret; something about which to be ashamed and embarrassed...and IT SHOULD NOT BE THIS WAY!! It is a disease as out of my control as cancer is to some people...or birth defects. But our society, by it's ignorance and faulty portrayels of it in pop culture, has created a powerful stigma and it is one that a person with sz feels and feels hard.
For one thing, let me firstly make it clear that schizophrenia is NOT multiple personalities!! That is another diagnosis entirely under the category of Dissociative Diseases. I don't know how this idea got started but it is wrong. And all the jokes, like "I'm schizophrenic and so am I" are NOT funny. They are based on a wrong idea. And as long as you don't understand what an illness really is; you will not be able to help or understand the people who suffer from it.
It is also not caused by an emotionally cold mother! It is not caused by early childhood trauma.
It is a genetic disorder, which strongly runs in families...which is affected by certain environmental factors. Trauma is one of them. Drug use is another. In other words; if you have the gene for sz, you may or may not develop the disease...However if you have certain other factors working against you, they, all together, may make the conditions right for the disease to emerge. It's the same situation as with heart disease: it can be genetic but it may never develop unless certain factors are present like a poor diet, lack of exercise, etc....And there are times when a person apparently has "a perfect life" and will still develop the disease.
Another prevalent misconception is the one that pushes the idea that people with sz are violent. Basically this idea equates schizophrenia with sociopathology. I think the case of "Son of Sam" was one that, inadvertantly, added to this faulty conception. Yes, there ARE some schizophrenic people who commit crimes intentionally or not...occasionally (as in the case of David Berkowitz) in the confusion of the disease this will happen. But the majority of people with this disease are peace-loving, quiet mannered and even withdrawn. They are just like any other cross section of people. There are those who have high morals, and those who don't. There are those who are violent, but the vast majority are not. You would not say that people with cancer are sociopaths, would you? Even though, I am sure, some sociopaths have cancer? NO. So why would you blame a whole group of people because they have a brain disease for the sins of a very few? This is truly a crime similar to racism. It is discriminatory and hurtful.
A fact of life for people with schizophrenia is the looming spector of homelessness. I don't have any statistics to give you, but there are a huge number of people with this disease who are homeless. Probably they comprise, by far, the greatest group of people in the homeless population. Why is this? Because family members get exhausted in trying to cope with this awful illness and they leave. Or a caretaker may die, leaving the person with sz to try to cope on their own. And due to the isolation of most people who have this disease and to the difficulty others can have in dealing with them, they are completely alone. Very few people with this disease can fully support themselves with employment. Most cannot work at all. They are, many of them, supported by Social Security Disability and Medicaid and programs like Food Stamps...and this is by necessity, not by laziness and not by choice. Please understand that. This disease is crippling in its effects on the human mind and even holding a conversation is a great and sometimes impossible task for those who suffer with it. It destroys memory, logical reasoning, verbal and conversational skills, and interpersonal skills to name only a few areas that it affects.
People with schizophrenia are not less intelligent than other people. Many, many of them are incredibly gifted and intelligent....but the disease steals all the potential they would otherwise have, robs them of opportunities and hand them a life of singular hardship instead. It even erodes their powers of memory and reasoning, thus diminishing the usefulness of that intelligence. I write this article. It's logical (I hope), the grammar is correct, I have a large vocabulary. But do you know that I'm sitting in this chair, where I sit every day....usually unwashed, in a room that is a mess, in the same clothes I've worn for most of the week...and I've talked to no one all week except my family? (I did go to prayer meeting at my church last night)....And I am relatively high functioning for a person with this disease. If you were to speak to me in any depth, you would see the evidences of this illness...it does not always transmit through my writing...which is why I like to write. It's the one thing I can do fairly normally...usually.
And lastly, schizophrenic people DO experience some emotions...they just are not good at conveying them. And sometimes they may be feeling one thing but in the trip between their mind and their body it gets scrambled and comes out as something entirely different. Needless to say this makes communication difficult and sometimes pained. And it eventually becomes something to be avoided altogether if only to avoid being misunderstood. Often my husband and daughter will perceive me as being angry when that is the last thing I would have described myself as feeling at the moment.
If you look at an MRI or a CT scan of the brain of a person with schizophrenia, there are observable and marked differences between that and the one of a "normal person." It is a physical disease. And it affects the emotions and mind. You would not believe the resistance I get when I state this fact to people. The stereotypes and false information and stigma run deep in our culture. And these things are one of the most powerful reasons that schizophrenic people "hide" out in their rooms and refuse to come out. It was my goal to challenge some of these misconceptions here and I hope I've challenged yours.
Thursday, February 25, 2010
Tuesday, February 23, 2010
Schizophrenia, part 2
I realized after I wrote the last post that I neglected to mention some pretty important symptoms of this disease, so I've decided to write another post and describe them for you.
There is the one which is probably the most famous. Hallucinations are hard to describe accurately to someone who has never experienced them. The best portrayal in the media which I have seen is in the movie, "The Soloist." There are many kinds of hallucinations including: auditory, visual, olfactory, taste and tactile. I have experienced all of these, but for me the most common ones are auditory and tactile. "The voices" as they are usually referred to, range from whispers, to LOUD and intrusive voices which are almost impossible to ignore or tune out. Imagine, if you can, having someone speaking or shouting right into your ear as you go about your day, trying to focus on the world around you and you will have an idea of what this symptom is like. It is distracting and often upsetting because the things they tend to say are usually not kind. They can be insulting, fear provoking, confusing and just downright annoying. The best method I have found for drowning them out is to wear my mp3 player headphones with the music cranked, literally at full volume, when they are most intrusive. But obviously, this prevents me from interacting much with the people around me so it is not always best. It is also destroying my hearing which is also not a good result. Yet, I still often do it to give myself some relief.
Popular jokes about the Voices are really off the mark. They are not friendly. They are not pleasant. They do not keep me company. Most people with sz hate them and would give anything for them to be gone. There are a few people who derive some comfort from them and do not want them to go. It is true that when they are quieter, it is disconcerting...like a stuck doorbell or something which has been ringing for years; and then stops. It does leave an odd gap.
When I am doing well, sometimes the voices will fade to whispers or to an occasional thing...like suddenly calling my name (which I often confuse for my family calling me when no one has). Or there will be a bell or some other sound which really is not there...which I often think is the phone or the doorbell.
Tactile hallucinations involve sensation. I will often feel that I am being grabbed from behind. I will jump and look behind me just as if someone had actually, unexpectedly grabbed my arm. Or I will feel bugs crawling on me, which, as you can imagine, is a distressing experience. I've also had hallucinations involving taste and smell. Hallucinations can involve any of the senses and will be as real an experience as if they had actually occured....indistinguishable from the other.
The other symptom that I failed to mention is that of "delusions." Delusions are beliefs about which the sz person will be convinced are true, which are not true in reality. For example, one time when I was in a psychiatric hospital, I was convinced that it was MY job and responsibility to behave in a certain way which would then release the other patients from the hospital. I had to pass all of these "tests" and if I was successful, then someone could go home! I would be allowed to go home only once I had successfully "discharged" all of the other patients.
Sometimes these delusions take the form of intricate, paranoid plots (for an example of this, watch the movie, "A Beautiful Mind") which can embroil the person with the illness and consume their attention. They may also have grandiose ideas, such as to believe that they are Jesus Christ or are prophets or even are something like a "Jedi Warrior" as does one person I know of. To try to talk them out of these beliefs is almost like trying to talk someone out of their belief in God because they run that strong and that deep.
These are what are known as the "Positive Symptoms" of schizophrenia, as opposed to the "Negative Symptoms" that I discussed in the post prior to this one. They are the most famous and the most intrusive parts of the illness for many people. For some people, they only experience these symptoms when they are in the midst of an episode and the medications are successful at controlling them otherwise. They will not have an episode for many years, as long as they take their medicine and the medicine is working properly for them. For other people, such as myself, the medicine only helps to control my level of conviction that these things are real. I experience voices very much all the time (although, as I've said, on rare occasions, they become sporadic and quieter). My doctor explained to me that "Psychotic" does not mean that I'm hearing voices. It means that I interact with them and start to believe that they are real entities. And that is the difference between wellness and unwellness for me.
Soon I will post a blog about popular myths and misconceptions about Schizophrenia which prevail in our culture.
There is the one which is probably the most famous. Hallucinations are hard to describe accurately to someone who has never experienced them. The best portrayal in the media which I have seen is in the movie, "The Soloist." There are many kinds of hallucinations including: auditory, visual, olfactory, taste and tactile. I have experienced all of these, but for me the most common ones are auditory and tactile. "The voices" as they are usually referred to, range from whispers, to LOUD and intrusive voices which are almost impossible to ignore or tune out. Imagine, if you can, having someone speaking or shouting right into your ear as you go about your day, trying to focus on the world around you and you will have an idea of what this symptom is like. It is distracting and often upsetting because the things they tend to say are usually not kind. They can be insulting, fear provoking, confusing and just downright annoying. The best method I have found for drowning them out is to wear my mp3 player headphones with the music cranked, literally at full volume, when they are most intrusive. But obviously, this prevents me from interacting much with the people around me so it is not always best. It is also destroying my hearing which is also not a good result. Yet, I still often do it to give myself some relief.
Popular jokes about the Voices are really off the mark. They are not friendly. They are not pleasant. They do not keep me company. Most people with sz hate them and would give anything for them to be gone. There are a few people who derive some comfort from them and do not want them to go. It is true that when they are quieter, it is disconcerting...like a stuck doorbell or something which has been ringing for years; and then stops. It does leave an odd gap.
When I am doing well, sometimes the voices will fade to whispers or to an occasional thing...like suddenly calling my name (which I often confuse for my family calling me when no one has). Or there will be a bell or some other sound which really is not there...which I often think is the phone or the doorbell.
Tactile hallucinations involve sensation. I will often feel that I am being grabbed from behind. I will jump and look behind me just as if someone had actually, unexpectedly grabbed my arm. Or I will feel bugs crawling on me, which, as you can imagine, is a distressing experience. I've also had hallucinations involving taste and smell. Hallucinations can involve any of the senses and will be as real an experience as if they had actually occured....indistinguishable from the other.
The other symptom that I failed to mention is that of "delusions." Delusions are beliefs about which the sz person will be convinced are true, which are not true in reality. For example, one time when I was in a psychiatric hospital, I was convinced that it was MY job and responsibility to behave in a certain way which would then release the other patients from the hospital. I had to pass all of these "tests" and if I was successful, then someone could go home! I would be allowed to go home only once I had successfully "discharged" all of the other patients.
Sometimes these delusions take the form of intricate, paranoid plots (for an example of this, watch the movie, "A Beautiful Mind") which can embroil the person with the illness and consume their attention. They may also have grandiose ideas, such as to believe that they are Jesus Christ or are prophets or even are something like a "Jedi Warrior" as does one person I know of. To try to talk them out of these beliefs is almost like trying to talk someone out of their belief in God because they run that strong and that deep.
These are what are known as the "Positive Symptoms" of schizophrenia, as opposed to the "Negative Symptoms" that I discussed in the post prior to this one. They are the most famous and the most intrusive parts of the illness for many people. For some people, they only experience these symptoms when they are in the midst of an episode and the medications are successful at controlling them otherwise. They will not have an episode for many years, as long as they take their medicine and the medicine is working properly for them. For other people, such as myself, the medicine only helps to control my level of conviction that these things are real. I experience voices very much all the time (although, as I've said, on rare occasions, they become sporadic and quieter). My doctor explained to me that "Psychotic" does not mean that I'm hearing voices. It means that I interact with them and start to believe that they are real entities. And that is the difference between wellness and unwellness for me.
Soon I will post a blog about popular myths and misconceptions about Schizophrenia which prevail in our culture.
Thursday, February 18, 2010
What is it like to be Schizophrenic?
I spend a lot of time online. Probably more time than I spend on anything else. One of the places I "hang out" is http://www.schizophrenia.com/. There is a lot of information there including a forum for people with this disease. There I have met a whole community of people with whom I've become friendly. (There are also forums for parents, spouses, professionals and anyone else who may be interested as well.)
I have learned a bunch of stuff at this site... For one thing, all of us with this disease, although we have individual stories and struggles, are very very much alike in the ways that we suffer. One of the biggest problems we have is with finding energy or the motivation to do really ANYTHING at all. This includes showering, brushing teeth, picking up after yourself and really anything other than sitting online all day.
I have learned a bunch of stuff at this site... For one thing, all of us with this disease, although we have individual stories and struggles, are very very much alike in the ways that we suffer. One of the biggest problems we have is with finding energy or the motivation to do really ANYTHING at all. This includes showering, brushing teeth, picking up after yourself and really anything other than sitting online all day.
It is very hard for "normals" to understand this. Years ago, I would not have understood it either...but now these things pose a great struggle for me. I used to be a very neat person, but now my personal space is chaotic and messy. (I try to keep the main areas of the house neat though, out of respect for my family). The strangest part of this is that it doesn't even bother me. I feel more comfortable with it this way. Maybe because my mind is chaotic also.
I would not really say this is laziness. Laziness is something you can help. This lack of motivation and energy is a "negative symptom" of schizophrenia (sz) and is worsened often, by the medication for the disease. Similarly, another negative symptom of sz is a "lack of affect"- or in other words - lack of expression of emotion. It's like the disease sucks the very life out of you and leaves you flat and dry.
On the forum, in the area for spouses, one husband asked "Is it possible for schizophrenics to truly love?" I was gratified by the answers he received. While sz's have trouble expressing affection or love, their inner experience of love is just as strong as it would be for a normal. Of course, this varies with the individual....just as it does in normal people. I so much wish my family could understand this. They think because I appear cool and disinterested, that I do not truly love them and, as a result, they have withdrawn their love from me. This is endlessly frustrating for me.
Of course, I am uncomfortable with overt displays of affection, even hugs are hard to take at times....yet my inner self is pleased with gestures of love. It's very hard to explain, this schism between your mind and emotions and body....how your mind can be pleased with a hug and your body wants to run from it, but that is the life of someone with sz.
Another thing that I found from these new friends is that we all tend to be very isolated....more comfortable alone in a room than with other people. That the noise and confusion of public places is overwhelming and upsetting, and that in such arenas, paranoia becomes a serious difficulty. As a result, we tend to spend almost all of our time at home by ourselves.
Paranoia is something that embarrasses me. And it's something I really struggle with greatly. Even during my years of remission, I often had problems with this type of thinking, but mostly was able to hide it. When I go out, I am often plagued by the idea that policemen and security guards are following me and about to catch me for some imaginary evil thing that I've done. When I am actively psychotic, I am so terrified of people that I think they are really going to harm me and this causes me to take measures to try to protect myself. These measures can be construed as violence, but truly they are evasive, self-defensive actions. Please note, that most sz's are quiet and mild mannered and wouldn't ever think of hurting anyone. The idea that we are sociopaths is wrong and greatly distressing to us.
These are just some of my personal experiences with this destructive brain disease. I thought maybe they may help some of you to understand us a little bit better.
illustration by Cynthia Lott Vogel...copyrighted by the artist.
Tuesday, February 16, 2010
When Questions Come
Last night I wrote a blog post for my other blog.
It was full of anger and despair, questioning my existence and the purpose of it...wondering why God had taunted me with the abilities he's given me and then taken all potential away for a fulfilling life by giving me the diseases I have.
I know.
These are places in your mind you don't want to go. Dark, screaming caverns of futility that Satan is just waiting to fill with HIS solutions.
But I went there.
And as I was stuffing my face with a bag of Tostitos (nothing like making yourself feel WORSE), I began to talk to a friend online. This friend does not share my usually positive view of life or that of a magnanimous God. But we both agreed that the answer....the only POSSIBLE answer to such questions is this: TRUST.
There is a quote that I love by Steve Brown. It says, "Never doubt in the dark what God has shown you in the light.
So what has God shown me in the light?
That he is good. That he loves me. That he is trustworthy. That he always has better things planned than I can understand. That what he says is true and reliable.
So do I trust in all of that in the dark nights when I want to kick and scream at the unfairness of it all?
Last night I decided, Yeah, I have to trust. Because all of life would be amuck if I didn't. Because those things are the very foundation of reason and hope in my life...and without them I would be lost in a complete vortex of meaninglessness and despair.
And besides.
Deep down, I know they are true.
It was full of anger and despair, questioning my existence and the purpose of it...wondering why God had taunted me with the abilities he's given me and then taken all potential away for a fulfilling life by giving me the diseases I have.
I know.
These are places in your mind you don't want to go. Dark, screaming caverns of futility that Satan is just waiting to fill with HIS solutions.
But I went there.
And as I was stuffing my face with a bag of Tostitos (nothing like making yourself feel WORSE), I began to talk to a friend online. This friend does not share my usually positive view of life or that of a magnanimous God. But we both agreed that the answer....the only POSSIBLE answer to such questions is this: TRUST.
There is a quote that I love by Steve Brown. It says, "Never doubt in the dark what God has shown you in the light.
So what has God shown me in the light?
That he is good. That he loves me. That he is trustworthy. That he always has better things planned than I can understand. That what he says is true and reliable.
So do I trust in all of that in the dark nights when I want to kick and scream at the unfairness of it all?
Last night I decided, Yeah, I have to trust. Because all of life would be amuck if I didn't. Because those things are the very foundation of reason and hope in my life...and without them I would be lost in a complete vortex of meaninglessness and despair.
And besides.
Deep down, I know they are true.
Sunday, February 14, 2010
How About Some GOOD News??!
I have good news to report. For the past several days, I’ve noticed a good trend. My depression seems to have lifted! I hadn’t realized how suffocating it was until it began to lift. The doctor recently added welbutrin to my medication regime, mostly in the desire to cut back on some of the symptoms and side effects I was having from the other meds they say I need to take. It has definitely reduced the drowsiness I was experiencing….we’ll have to see how my weight gain fares in the face of it. So far, I’ve lost about 20 pounds…but that is a drop in the bucket compared to where I want to go!
The doctor said that her goal is to get rid of one of the other antidepressants (Effexor XR) once she knows how I’m responding to the welbutrin. The other piece of good news that I have, which I didn’t even realize until today when I was reading a thread on a forum I go to for people who have been diagnosed with Schizophrenia, is that my tactile hallucinations have diminished greatly. For me these sensations would run the gamut from bugs walking on me, to being grabbed from behind. Needless to say, these things were quite distressing and even though I’d come to realize what they were when they occurred, I never was able to stop the startle response that I’d had from them. I’m not sure what medication to attribute this change to, probably the Loxitane which had granted me numerous years of peace from the illness in years prior. Makes me wonder WHY we didn’t naturally return to this drug to pull me out of the tailspin I’ve been in for the past three years right away…DUH!!
I would still like to pare down my list of medications. I’m on a sick amount of them (many for physical problems as well.) The cost is exorbitant and the whole thing just seems to me to be unneccesary. I’ve already cut back on a few of the “physical” ones, and am hoping that once I lose some more weight, some of them, like the heart/blood pressure medicine can be eliminated also.
But for now, I am just glad to be glad to be here.
I am glad to feel even some joy.
It’s been a long, long time.
The doctor said that her goal is to get rid of one of the other antidepressants (Effexor XR) once she knows how I’m responding to the welbutrin. The other piece of good news that I have, which I didn’t even realize until today when I was reading a thread on a forum I go to for people who have been diagnosed with Schizophrenia, is that my tactile hallucinations have diminished greatly. For me these sensations would run the gamut from bugs walking on me, to being grabbed from behind. Needless to say, these things were quite distressing and even though I’d come to realize what they were when they occurred, I never was able to stop the startle response that I’d had from them. I’m not sure what medication to attribute this change to, probably the Loxitane which had granted me numerous years of peace from the illness in years prior. Makes me wonder WHY we didn’t naturally return to this drug to pull me out of the tailspin I’ve been in for the past three years right away…DUH!!
I would still like to pare down my list of medications. I’m on a sick amount of them (many for physical problems as well.) The cost is exorbitant and the whole thing just seems to me to be unneccesary. I’ve already cut back on a few of the “physical” ones, and am hoping that once I lose some more weight, some of them, like the heart/blood pressure medicine can be eliminated also.
But for now, I am just glad to be glad to be here.
I am glad to feel even some joy.
It’s been a long, long time.
Thursday, February 11, 2010
The Next Leg of my Journey
Well, I got the "okay, I'll let you go" from my pulmonologist today to return home. He told me to "rest and take things easy," and then added a kind of hesitant, "I hope you'll be okay...." When I asked him how much exercise he thought I could tolerate he said immediately, "NONE!....but you can walk...walking could be your walkway to life."
That's not what I wanted to hear; me who had plans of starting to exercise and to push the parameters of my limitations up and away. It wouldn't sound so bad, because one would think, "So WALK! You can build up and walk for miles!" I could. If my hips worked. I could. If I didn't have shaking knees and violent coughing after just going a short way down the hospital hall. It's a case of having bigger ambitions than I have ability to follow up. I can sit and fantasize about Yoga and cardio (even roller blading...might as well go all out in this fantasy!), and strength training....but when I am shoulder up to the unyielding obstacle of a body that is just hell bent on self-destructing, I confess that I am fighting to maintain any optimism at all. I have fought the urge today to whine. To concede to failure. To ask God, WHY??? He gave me this disease? I got home and S-L-O-W-L-Y unpacked and put things away. I made one trip down the stairs and didn't think I would survive the return trip.
And I have to confess that maybe optimism and determination may make for weak opponents to my poor health....scanty and insufficient powers to resist something bigger than myself. But I cannot cave yet. I will have to follow the doctor's orders. But I need to push the limits of my weakness. Go outside and walk....even if it's just to the road and back from my house. Refuse to just sit in my recliner all day, as I've been doing. Push BACK. and pray a whole lot. I've failed to see that this is my life at stake here. I've failed to recognize the severity of the situation....that I'm a breath away from not breathing anymore. I cannot just glide into that darkness without having fought to live a little longer....even though, if it were only my personal concerns at hand, that would be fine. But I have a family...friends....a church....and maybe God still has some work for me here to do....I cannot concede the battle til it has been fought with every last breath in me.
Where is that balance between acceptance and abiding in the path where God has placed me and also not quitting at life? It is a delicate line to tread....and it may be one in which I can only do what I can only do and then must just leave it at that. Perhaps to refrain from anger and bitterness is the bigger part of the battle. I don't know. I haven't walked this path before. I have striven with illnesses before, major ones, but there was never this sense of powerlessness and finality about them....I always knew I'd recover, and I always did....Even when I didn't want to... But now, I'm wanting to....and finding I may not. God always has something new for us....Even when it's not something we really think we want. I guess I'll have to put aside my own agenda and look under the covers for what he has tucked in there for me to discover....And knowing him, the discovery will be something sweet.
That's not what I wanted to hear; me who had plans of starting to exercise and to push the parameters of my limitations up and away. It wouldn't sound so bad, because one would think, "So WALK! You can build up and walk for miles!" I could. If my hips worked. I could. If I didn't have shaking knees and violent coughing after just going a short way down the hospital hall. It's a case of having bigger ambitions than I have ability to follow up. I can sit and fantasize about Yoga and cardio (even roller blading...might as well go all out in this fantasy!), and strength training....but when I am shoulder up to the unyielding obstacle of a body that is just hell bent on self-destructing, I confess that I am fighting to maintain any optimism at all. I have fought the urge today to whine. To concede to failure. To ask God, WHY??? He gave me this disease? I got home and S-L-O-W-L-Y unpacked and put things away. I made one trip down the stairs and didn't think I would survive the return trip.
And I have to confess that maybe optimism and determination may make for weak opponents to my poor health....scanty and insufficient powers to resist something bigger than myself. But I cannot cave yet. I will have to follow the doctor's orders. But I need to push the limits of my weakness. Go outside and walk....even if it's just to the road and back from my house. Refuse to just sit in my recliner all day, as I've been doing. Push BACK. and pray a whole lot. I've failed to see that this is my life at stake here. I've failed to recognize the severity of the situation....that I'm a breath away from not breathing anymore. I cannot just glide into that darkness without having fought to live a little longer....even though, if it were only my personal concerns at hand, that would be fine. But I have a family...friends....a church....and maybe God still has some work for me here to do....I cannot concede the battle til it has been fought with every last breath in me.
Where is that balance between acceptance and abiding in the path where God has placed me and also not quitting at life? It is a delicate line to tread....and it may be one in which I can only do what I can only do and then must just leave it at that. Perhaps to refrain from anger and bitterness is the bigger part of the battle. I don't know. I haven't walked this path before. I have striven with illnesses before, major ones, but there was never this sense of powerlessness and finality about them....I always knew I'd recover, and I always did....Even when I didn't want to... But now, I'm wanting to....and finding I may not. God always has something new for us....Even when it's not something we really think we want. I guess I'll have to put aside my own agenda and look under the covers for what he has tucked in there for me to discover....And knowing him, the discovery will be something sweet.
Wednesday, February 10, 2010
Shout Joy!
Shout Joy
By Madeline L’Engle
O sing unto God
and sing praises unto his Name
magnify him that rideth upon the heavens
praise him in his Name
Jah!
shout it
cry it aloud upon the wind
take the tail of his steed
and fling across the sky
in his wild wake
Jah!
he cannot be caught
he cannot be fled
he cannot be known
nor his knowledge escaped
the light of his Name
blinds the brilliance of stars
Jah!
catch the falling dragon
ride between his flailing wings
leap between the jaws of the lion
grasp the horn of the unicorn
calling with mighty voice
Jah!
caught in star flame
whipped by comet lash
rejoice before him
cry above the voices of the cherubim
shout alongside the seraphim
Jah!
bellow joy behind kings
scattered by the quaking of his hills
fleeing before his fire
rush like snow through his thunderous flame
crying with gladness
adoration of his Name
God is Lord
Jah!
By Madeline L’Engle
O sing unto God
and sing praises unto his Name
magnify him that rideth upon the heavens
praise him in his Name
Jah!
shout it
cry it aloud upon the wind
take the tail of his steed
and fling across the sky
in his wild wake
Jah!
he cannot be caught
he cannot be fled
he cannot be known
nor his knowledge escaped
the light of his Name
blinds the brilliance of stars
Jah!
catch the falling dragon
ride between his flailing wings
leap between the jaws of the lion
grasp the horn of the unicorn
calling with mighty voice
Jah!
caught in star flame
whipped by comet lash
rejoice before him
cry above the voices of the cherubim
shout alongside the seraphim
Jah!
bellow joy behind kings
scattered by the quaking of his hills
fleeing before his fire
rush like snow through his thunderous flame
crying with gladness
adoration of his Name
God is Lord
Jah!
This poem also formed the lyrics of a song which my college women's choir debuted along with West Point's cadet choir in my freshman year of college. It was an amazing performance (one that I still have entrapped on an audio cassette) and one of those sparkling, exhultant moments of life that you want to preserve for always. Madeline L'Engle was scheduled to have been there to see her song performed but alas, was kept home by an illness. This is one of the poems that makes my soul fly!
Friday, February 5, 2010
Dear Cynthia....(my own response to "Dear Sara")
The following is a blog post from my Spark People Page, which I wrote yesterday and want to share with you. For those of you who have not heard of "Spark People," it is a website for those people who are stuck in some unhealthy patterns of lifestyle and want to break out into better habits and stronger, leaner bodies. It provides not only educational material to help in the quest but also a huge, strong support network of friends as well who are all ensconced in various stages in the same pursuit.
"I just got a very nice email from a Spark friend today, encouraging me as I lay in this hospital room... Well, I went to write back to her and to tell her of my pursuit today in writing a Motivational Incentive Contract for myself, (which was inspired by an article I read here at Spark)....first my power cord got pulled, just as I was impressing myself with the rays of understanding and illumination I was pouring out to LadyIris, and I was in an awful sweat that I'd lost my letter. But no, (thank you Windows), my document was preserved....So I went on, wrapping up my expositive on my inner minds workings, and pushed a key, (accidentally...still don't know what key it was)...and suddenly, terminally, and unregainably, the whole letter disappeared! So while Lady Iris sits and awaits the reply to her lovely letter, I am scampering to the blog site, to try to "recover" my email to her, because there were some important facts in it.
"Firstly, today, I encountered, floating in my Document file, a wan, pathetic journal entry dated this past January, on the day that I'd weighed in at my heaviest body weight EVER...and I was disgusted, defeated, full of self hatred, and most of all, feeling helpless to ever take control of my body back again. I have HEALTH ISSUES which prevent me from exercising! I have to take steroids and medications which cause my metabolism to slow and for me to retain much fluid and which increase my appetite! I am perimenopausal for God's sake! Who can expect a mess like that to do anything to be able to physically better themselves! And on and on went the whining.
"Then, very shortly after, I encountered the Spark People pages. This was very literally, a God-send...a God-response to my SOS need. And I began the dialogues with Hugmonkeymom and LadyIris which have meant so much to me so far. Back then, I was dealing with a rapidly changing (and not for the better) physical status. I have severe, severe asthma which only days ago almost succeeded in ending my life once again. I have severe chronic pain from mulitple disorders...a spine that is literally crumbling apart, and hands which are twisted and very painful,...and on and on it goes. I am also immuno-compromised due to the toxic medications I've had to take for these conditions as well...so have been battling one infection after another....for months. Back then, I was in a process of realizing that life as I knew it, was being torn from my hands and I am and was facing the real possibility of needing some kind of assisted care living situation... I was mourning the loss of my freedom and independence and youth, and yet was still not able to resolve any of those feelings.
"The solution for this unsettledness was, as I identified it back then, a need for a doctor to sit me down and be honest with me...to tell it like it is and to say to me, "Look this is irreversible...this is your life from now on, deal with it." And without that "permission to despair" I could not mourn or grieve anything and yet was constantly thwarted in my desire to live as I once had.
"Now I see something very different. I can see that no doctor is going to sit me down and write me a death sentence (or they shouldn't anyway) and even if they did, I KNOW that some healthy part of my heart would question it. Why? BECAUSE I HAVE NOT DONE EVERYTHING WITHIN MY POWER TO MAKE IT not HAPPEN.!!
I have not pushed the limits of my strength. I am wearing a body which is in every way geared to resist health and to succomb to illness. I have not exerted effort physically ,mentally or emotionally into climbing out of this messy hole that I'm in. And because of that, I CANNOT QUIT> I CANNOT RELAX> I CANNOT ACCEPT> I CANNOT MOURN THE PASSAGE OF MY HEALTH.
"And, as I'm learning in Spark, there are real things I can do to empower myself to take these steps. Now, I know that I cannot tomorrow get on some sweats and do a cardio routine, or begin training for a half marathon. No, for me it begins with unplugging my IV pole and trotting off down the hallway, bending over to cough up a lung every few feet or so before continuing my lap. OK, so be it. If that's where I am, then that's where I'll have to start. I do not know how far my own efforts will take me...but I do know that they can only take me in good directions as long as I am smart about what I do. And then, when I've come to a point further along in my journey and I've made some real lifestyle changes, and I'm still needing that nursing home, then I will have to say goodbye to the past ....but I will go into the future being a different person for my journey...and these are changes that I hope I will maintain, despite whatever environment I shall find myself in; despite whatever institutional food I find I must choke down. And I'm going to have FUN doing it.
"I just got a very nice email from a Spark friend today, encouraging me as I lay in this hospital room... Well, I went to write back to her and to tell her of my pursuit today in writing a Motivational Incentive Contract for myself, (which was inspired by an article I read here at Spark)....first my power cord got pulled, just as I was impressing myself with the rays of understanding and illumination I was pouring out to LadyIris, and I was in an awful sweat that I'd lost my letter. But no, (thank you Windows), my document was preserved....So I went on, wrapping up my expositive on my inner minds workings, and pushed a key, (accidentally...still don't know what key it was)...and suddenly, terminally, and unregainably, the whole letter disappeared! So while Lady Iris sits and awaits the reply to her lovely letter, I am scampering to the blog site, to try to "recover" my email to her, because there were some important facts in it.
"Firstly, today, I encountered, floating in my Document file, a wan, pathetic journal entry dated this past January, on the day that I'd weighed in at my heaviest body weight EVER...and I was disgusted, defeated, full of self hatred, and most of all, feeling helpless to ever take control of my body back again. I have HEALTH ISSUES which prevent me from exercising! I have to take steroids and medications which cause my metabolism to slow and for me to retain much fluid and which increase my appetite! I am perimenopausal for God's sake! Who can expect a mess like that to do anything to be able to physically better themselves! And on and on went the whining.
"Then, very shortly after, I encountered the Spark People pages. This was very literally, a God-send...a God-response to my SOS need. And I began the dialogues with Hugmonkeymom and LadyIris which have meant so much to me so far. Back then, I was dealing with a rapidly changing (and not for the better) physical status. I have severe, severe asthma which only days ago almost succeeded in ending my life once again. I have severe chronic pain from mulitple disorders...a spine that is literally crumbling apart, and hands which are twisted and very painful,...and on and on it goes. I am also immuno-compromised due to the toxic medications I've had to take for these conditions as well...so have been battling one infection after another....for months. Back then, I was in a process of realizing that life as I knew it, was being torn from my hands and I am and was facing the real possibility of needing some kind of assisted care living situation... I was mourning the loss of my freedom and independence and youth, and yet was still not able to resolve any of those feelings.
"The solution for this unsettledness was, as I identified it back then, a need for a doctor to sit me down and be honest with me...to tell it like it is and to say to me, "Look this is irreversible...this is your life from now on, deal with it." And without that "permission to despair" I could not mourn or grieve anything and yet was constantly thwarted in my desire to live as I once had.
"Now I see something very different. I can see that no doctor is going to sit me down and write me a death sentence (or they shouldn't anyway) and even if they did, I KNOW that some healthy part of my heart would question it. Why? BECAUSE I HAVE NOT DONE EVERYTHING WITHIN MY POWER TO MAKE IT not HAPPEN.!!
I have not pushed the limits of my strength. I am wearing a body which is in every way geared to resist health and to succomb to illness. I have not exerted effort physically ,mentally or emotionally into climbing out of this messy hole that I'm in. And because of that, I CANNOT QUIT> I CANNOT RELAX> I CANNOT ACCEPT> I CANNOT MOURN THE PASSAGE OF MY HEALTH.
"And, as I'm learning in Spark, there are real things I can do to empower myself to take these steps. Now, I know that I cannot tomorrow get on some sweats and do a cardio routine, or begin training for a half marathon. No, for me it begins with unplugging my IV pole and trotting off down the hallway, bending over to cough up a lung every few feet or so before continuing my lap. OK, so be it. If that's where I am, then that's where I'll have to start. I do not know how far my own efforts will take me...but I do know that they can only take me in good directions as long as I am smart about what I do. And then, when I've come to a point further along in my journey and I've made some real lifestyle changes, and I'm still needing that nursing home, then I will have to say goodbye to the past ....but I will go into the future being a different person for my journey...and these are changes that I hope I will maintain, despite whatever environment I shall find myself in; despite whatever institutional food I find I must choke down. And I'm going to have FUN doing it.
This is basically my own response to the "Dear Sara" post I wrote in here some days ago...I think I got the answers I was seeking even without the assistance I was looking for.... Isn't God cool like that?
Thursday, February 4, 2010
NO FEAR....
I'm still in the hospital. I think I'm out of immediate danger now, but my lungs are taking their sweet time in recovering... The doctor says I will not be able to go home until next week...so it means another long weekend here. I am hopeful that tomorrow I will be able to see my daughter if my plans to get her here go smoothly, so that should help some of the time go by...and she will come armed with a folder of last year's medical receipts for me to add up and prepare for the accountant prior to our tax appointment next week...so for what more fun could a girl ask!
I was visited by a woman who is becoming a good friend here at "my" hospital. She is a volunteer on the chaplein staff and because I mark down "Christian" as my faith preference, it is always my pleasure to receive her visits on thursdays when she makes her rounds. We now know each other by first name and have had some very sweet times of prayer together. I was disappointed today because our time was cut short by the arrival of the respiratory therapist and we did not get to pray today....but it was good to see her nonetheless. She left me with a verse, handwritten in her beautiful handwriting, "Exodus 14:13, Do not be afraid, Stand firm and you will see the deliverance the LORD will bring to you today."
Stand Firm .
No fear.
Deliverance will be VISIBLE
TODAY.
The thing is that deliverance does not always wear the clothes that we expect it to wear. It can mean a burst of endurance, rather than healing from pain; It can come in the form of an encouraging word or visit from a friend in a moment of loneliness; It can just be found in the sweetness of Christ's whisper to us in our blackest moments....like it was for me last Saturday and Sunday as I trod the fine line between death and life and I found such joy in knowing he was also on both sides of that line for me.
The trick is to keep our eyes and ears and heart open to seek out the deliverance in our times of need and to recognize it however it comes. But to live EXPECTING IT and to go forth FEARLESSLY because He has PROMISED that it WILL BE THERE WHEN WE NEED IT.
I was visited by a woman who is becoming a good friend here at "my" hospital. She is a volunteer on the chaplein staff and because I mark down "Christian" as my faith preference, it is always my pleasure to receive her visits on thursdays when she makes her rounds. We now know each other by first name and have had some very sweet times of prayer together. I was disappointed today because our time was cut short by the arrival of the respiratory therapist and we did not get to pray today....but it was good to see her nonetheless. She left me with a verse, handwritten in her beautiful handwriting, "Exodus 14:13, Do not be afraid, Stand firm and you will see the deliverance the LORD will bring to you today."
Stand Firm .
No fear.
Deliverance will be VISIBLE
TODAY.
The thing is that deliverance does not always wear the clothes that we expect it to wear. It can mean a burst of endurance, rather than healing from pain; It can come in the form of an encouraging word or visit from a friend in a moment of loneliness; It can just be found in the sweetness of Christ's whisper to us in our blackest moments....like it was for me last Saturday and Sunday as I trod the fine line between death and life and I found such joy in knowing he was also on both sides of that line for me.
The trick is to keep our eyes and ears and heart open to seek out the deliverance in our times of need and to recognize it however it comes. But to live EXPECTING IT and to go forth FEARLESSLY because He has PROMISED that it WILL BE THERE WHEN WE NEED IT.
Tuesday, February 2, 2010
Decisions toward Health
I am not sure exactly how much control I have over my health status. Sometimes it seems like the harder I push and the more I do, the sicker I get....and sometimes, when I'm vegetating and resting, I'm constantly sick also. I have decided to take a bit more of a proactive role in trying to "manipulate" health into my body. Exercise...beginning slowly and gradually, firmly increasing. Reading up on what health and supplemental actions I can take to improve my chances of resisting illness....journaling and maybe taking some online classses to maintain an inner awareness of how my emotions might be working against me. Eating well....and eating to lose weight. Maintaining a steady weight loss and inches lost as well through diet and exercise. Getting significant and sufficient rest. Researching my medications and their effects on my body and taking a more active role in determining which ones I will keep and which ones must go.
I started already....even here in the hospital, by walking for 15 minutes in the halls....it beats nothing .... and every day I will aim to do more.
One of my goals this spring and summer is to spend much more time outside....
FIND things to do that will get me fresh air and sunshine.
Go to different locations to walk, or even swim.
Go to the community beach for walks.
Play ping pong in the rec room.
Spring clean the house and simplify and eliminate dust making junk.
There are a million goals I could make but really just sticking to a few of them consistently will make a bigger impact than being spread too thin and too diversely.
I think the biggest change should be in the direction I am heading. Do I want to head for disability or head for health? For dependence or independence? This will involve the biggest mind shift that I need to make. I am not an old woman...stop trying to hang your life up on a shelf...instead; take it down, dust it off and give it a whirl...then try it on for size. Expand your life and shrink your body....you need to give yourself breathing and dancing room.
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