Easter Song

Sunday, January 30, 2011

My Dysphoric "Other"

This post is going to be a bit more open; and a bit less philosophical or theological --at least that's the direction in which I feel I'm headed.

I'm feeling very frustrated.
By relationships.
By my inability to "do" a healthy relationship.
My personal, familial relationships are pretty much destroyed by my moodiness and my detachment from all my inner emotion (of which I often have ask myself, "is there really anything IN there??), my irritability, my lack of trust in them and their incomprehension of me and years of anger and disappointment piled on top of that.

I am grateful for my relationship with my father. It seems to be one of the only healthy relationships that I have...as long as we can keep all emotion out of it; we are fine. (my dad is not terribly comfortable with his emotional self. He tends to "live in his head" for the most part) And lately, that has been all too easy.

But there is a huge paradox.
While I feel NOTHING...(emotionally speaking)...I seem to be so EASILY swept into sudden rage and constant irritability. It feels so completely out of my control. I've prayed about it. Asked forgiveness for every outburst I've had and unkind thing I've said. I've stood in horror listening to epithets pour from my lips which I would normally not dream of saying...and these even work their way into my everyday speech at times. And I feel like I'm watching someone ELSE behave this badly. And I can't stop them.

I was feeling a HUGE weight of self-condemnation for this...for months and months. And feeling like the worst sinner and worst hypocrite to walk the face of this earth. Because this bitch-on-wheels is NOT ME!! Where does she come from?? She's not anything I want to be; and nothing like what I've been known to be (except when psychotic....then: watch OUT!J)...She does not spring from my beliefs, my sense of people or the world...she just APPEARS...wreaks havoc in my life....and then is gone...only to be back moments, hours or days later....

And then I read on schizophrenia.com about a symptom of sz called "dysphoria" ...this is exactly the opposite of "euphoria"....It means to be constantly irritable and constantly in a bad mood.
And that stopped me in my tracks.

You mean SHE is a SYMPTOM???
NOT ME??
NO MY FAULT???

And then before the relief had time to eke its way into my bones, I threw a HUGE fit, yesterday. Behaved abominably. And while , it is true that I was egged on by less than optimal responses from my family, I was WAY over the line...even for me...even for HER.
And again, the sense of failure and shame and shock. I was appalled at the intensity of my anger...I could have KILLED, I was so angry.

And at the same time, I felt so sick yesterday...I didn't know why. My head was throbbing, My legs were shaking underneath me like they did the first time I walked after a long bout with steroid myopathy....My vision was blurred and doubled...even my hands too weak to type....(and they still feel that way)...

And because I'm being admitted to the medical hospital today for Hyponatremia (low sodium levels in the blood)...I decided to look it up on Google. Well. Symptoms ? Headache. muscle weakness, extreme irritability and rages,....etc etc. I was having every single symptom except the one I wanted : Loss of appetite (lol).

And when I read that, and I read the schizophrenia symptoms, I felt a huge release. It's not my fault. it's really not my fault. The reason it's felt so out of my control is that it IS out of my control. (and I'm not taking this as carte blanche to act badly...I know I'm still responsible for what I can control).... But just like someone with Altzheimers or dementia...or a brain tumor is not responsible for their moods or behavior....so I too have a legitimate explanation for that which I'd been castigating myself for for months.

God is NOT displeased with me.

He knows I am really doing the best that I can do.

And this realization makes hot tears spill down this deadpan face.

Sunday, January 23, 2011

The Feritilizer of Faith

I bought an Amazon book, based on a review by a fellow blogger, which just may be the best and most beautifully written book I've ever read. It is so beautiful that I wish I could memorize the whole thing like a Psalm....I hate to let any of it go...I hate ending one sentence and going on to the next because I don't want the poetry of her words to end. It's called. One thousand Gifts...a Dare to live Fully Right Where you Are by Ann Voskamp. It may be best suited to the poetic soul of a woman, but it so excellent that it can't fail to have universal appeal.

The author comes from a place of early tragedy and loss which left her hating her life...and one day has a revelation brought on by a nightmare...that leads her to pursue what it means to live a full life...one that is ready to face God without disaster at the end of it. She touches on the topics of suffering, loss and the Sovereignty of God....and then works her way to Gratitude, Grace and joy, all three of which are contained in the roots of the Greek word Eucharisteo which is the word used when Jesus gave thanks for the broken bread. The book talks about how to live the Eucharist. She uses numerous quotations from many sources of religious literature and her conclusions and approach would have appeal and relevance to anyone of any faith…

The book, while not difficult to read, contains many deep, inexhaustible truths all encapsulated in sentences so consummately elegant that you wish there were frames in which to put phrases to hang them on a wall to admire. Instead you can merely repeat them over and over, tasting them on the tastebuds of your heart and savoring their exquisite flavor.

As a person who has suffered deeply and greatly in my life, I can affirm personally the truth of the conclusions at which Ann Voskamp arrives. There is no fluffy, trite theology here...It is blood and guts reality discussed in a manner which allows you to see the Beauty in the Ugliness of Life. And shining through it all is the face of a beautiful, loving, and sovereign God.

I would be wondering why and how it is that this book and I have not met sooner--as it seems to be so very much 'down my alley'...but I know that God reserved it, like a special gift, for just this very moment of my life. The book does not require much of a time commitment because it is so jam - packed with God and beauty that you can only tolerate it in one or two page chunks...or your soul would explode.

"God is always good...and I am always loved"


This is one of the lines from that book; one that most people might pass right over—it is fairly innocuous—but it stopped me like thunder...because it is the soul-song of my life. The first part of the sentence I've pretty much "gotten" over the past three years...but I am just recently growing up into the latter part—and that journey of growing has taken me, oh, a mere….48 years?? And it will continue until my clock stops ticking.

When those two elements are true— (meaning true in our understanding, belief, and experience)...and I would add a third, "he is always working" (meaning there is always an omniscient purpose in everything he does) then a person can get through anything...anything, and not lose their faith...and not lose their hope.

They very much remind me of the words of a CMA pastor who was derailed by a mysterious, catastrophic illness and after he’d stabilized somewhat, was forced to step down from his pastorship, because his health was so destroyed. He stated in the first address he made to his congregation, struggling to breathe and to speak through his tracheotomy, (and I’ve made reference to this before in my blogs, if it sounds familiar to you,): “I don’t like the path I’m on, but God is in it and God is good.”

These are words that I’ve repeated to myself –oh probably a mere, 200+ times in the past several years since I first heard them. They have gotten me through many illness and indescribable daily pain…the relinquishment of my freedom and independence…and the admission that my future probably will not be a bright one (at least not in terms of strength or comfort or accomplishment). They’ve kept me from doing some desperate and stupid things in my attempts to avoid pain. They’ve kept me from the grip of despair and…if not put a smile on my face…they’ve at least kept me going on and not falling prey to hopelessness or the abandoning of my faith.

I could preach on and on about the lessons that suffering has brought my way…and especially now, in a hard time in my life, when they are so much in the forefront of my mind…but that is not the purpose for which I’m writing this post.

I’m writing it to say, as Ann Voskamp points out, there is BEAUTY shining right behind the visage of ugliness that our circumstances and surroundings often show to us. This beauty is BEAUTY - the face of our loving Lord –who took on ugliness so that we “might become Beauty” as Ann states it. He took it on in his appearance…in his poverty, in his circumstance…and tackled it head on in the faces and actions of those who hated him—who were really propelled by the personification of ugliness from the forces in hell itself.

An odd thought just occurred to me. If Jesus as Beauty is masked in ugliness and that which he uses is often ugly—in order to lure us to Beauty…then Satan is Ugliness, masked in beauty…and he uses beautiful lures, like artfully tied fly hooks…to catch us with their sharp barb and bring us to places of real ugliness. He knows that you catch flies with honey…but God will often feed us healthier, heartier…and more difficult to digest “food” through tough circumstances, illness, pain and suffering to make us really healthy, well grounded and STRONG in the face of whatever adversity brings our way. He does not buy our affection with gaudy toys, but instead carves them with sharp chisels from hard marble…polishes them with rough sanding…until we are firm, able to endure, and can shine with a real Beauty of soul and spirit without faltering, secure in the knowledge of his love and able to love him from bottoms of the strong foundation from which we are carved.

Thank you Ms. Voskamp for a truly powerful—and life-changing book, which is presented to us in such lyrical words and phrases; YOU used Beauty to portray Beauty.

Tuesday, January 18, 2011

Fragmented Faith; God, in the lives of the Mentally Ill - Pt 2

Painting by Amber Osterhout
God as Lover or Judge?- Wrong Views lead to Wrong Fears

1) Societal stereotypes of God conflict with Grace

One of Satan's best and most effective lies is that one must "be good" in order to avoid the judgment of an angry, vengeful God's plans for personal torture which may even exceed the suffering of mental illness. The idea that God is an impossible to please, demanding judge who takes delight in pitching his creatures one by one into a hell that he has created especially for them or even the view that God has created their own personal suffering on this earth as some sort of sadistic plot conceived for the sole purpose of his amusement at watching us squirm and writhe under the tortures of mental illness often fill the mentally ill with resentment. The result is either that they, out of fear of even greater judgment, comply with the "rules and regulations" of a works based mentality in order to avoid the hell of God's creating or they reject this "sadistic" God out of great anger and a heart of hatred toward the "crafter" of their torturous existence. I have read statements about God on forums which are not just blasphemous but wrongly conceived and which come from deeply wounded and hurt hearts who are lashing out at the one whom they perceive to be the source of all of their own struggles and pain while they deal with broken lives and wounded minds.

Memories perhaps of angry, demanding, and hard to please earthly fathers who may even be abusive get intermingled with our ideas of God as the word "father" brings up pictures of pain, punishment, emotional distance, criticism, impossible demands, and perhaps even abuse. Many earthly fathers in these times of broken families, have abandoned their children and wives, leaving them to manage as best they can - always struggling with poverty and leaving the children with bitter, unresolved anger and unmet needs. Other fathers may be cold and distant leaving their child always struggling with an unmet need for affection and validation and, naturally, all of these feelings will taint our view of God and will arise at the thought of him as "Father." And then of course there is the horror of the father who may have been physically or sexually abusive---and this carries to our understanding of God a whole basketful of misconception, hurt and anger.

2)A Wrong View of God Leads to Fears of Judgment-

The idea of God as Judge comes with a load of potential misunderstanding and susceptibility to the lies of Satan. Images which perhaps are the cultural vestiges of historical portrayals of God in Dante's Inferno or "Sinners in the Hands of an Angry God" cause sinners to see themselves as hanging by a mere gossamer thread over the pit of hell where exquisite eternal torture awaits them. T0rtures designed and crafted by a vengeful God which make the "medical experiments" of Nazi Germany look tame in contrast, haunt the vivid imaginations of the psychotic....who take a crumb of truth and bake a large cake from the idea which is a warped miscreant of the original truth, really bearing very little resemblance to that original holy idea. And make no mistake, this error is not the thought-child of the mentally ill only...It pervades our society and there are numbers of people who reject the idea of a holy, perfect God who demands holiness and perfection of his children FOR THEIR OWN BENEFIT and who not only demands it, but has, from his own lifeblood and pain provided a means for them to obtain it. And thus, they hate this God who is the child of their misconception and is only a twisted, deformed version of One who is, instead, loving, beautiful and true Father.

3) To the psychotic person, the imagery of hell and demons and Satan pose particular difficulty and challenges.

For a very, very common delusion is that demons are the true source of their hallucinatory "voices"...and this leads them to either fear and hate the idea...or else embrace it in a pursuit that very closely resembles Satanism Some people become so used to the Voices they hear providing a constant dialogue in their lives, they can find some comfort in them sometimes and actually would miss them were they to leave. And if those voices masquerade as demons...then the person may view themselves as a demon worshiper or someone who is controlled by the dark powers. And also just as exist in the "normal population," I have seen influences of Wicca and other idolatrous worship where something or someone OTHER than the Father/Creator is the object of devotion and service. Other times, the mentally ill person is so terrified and horrified by these voices and the demons he believes that they represent that they desperately try to avoid and escape them and will shun every vestige of demonic activity in the 'real' world.

Please do not take these statements out of context or make them a blanket basis for your understanding of the mentally ill. They are not devil worshipers. They are NOT possessed by Satan or by demonic powers. This idea has, more than any other, harmed the cause of a legitimate understanding of mental illness and has afflicted the mentally ill, (oddly, those who attend church and are in a religious setting or community of faith are the must susceptible to the pain that this misunderstanding can create.) with more harm and hurt than has any other misconception or stereotype. Mental illness responds to medication which addresses the excessive levels of dopamine in the brains of schizophrenics or which increases the levels of serotonin in the brains of depressed or obsessive compulsive individuals. Demon possession would be utterly unresponsive to such treatment. And in contrast, exorcism or prayers to "bind
Satan" and his influence in the hearts and lives of the mentally ill have no effect other than perhaps to worsen their symptoms and suffering by giving them fuel for further delusion.


4) God is blamed and viewed as the source of their suffering and illness.

I can speak from personal experience when I tell you that their IS NO SUFFERING quite as intense or peculiar as is the tortures faced by the mentally ill. They are suffering from a physical deterioration of a diseased brain in an illness that usually strikes us in the prime of our lives...just at the age where we are preparing for a career or for beginning a relationship and starting a family. It disrupts our educational promise...often derailing the minds and careers of those whose potential is the most shining and illustrious. Schizophrenia, in particular, strikes people who are highly creative, resourceful and high functioning in terms of intelligence and educational goals. It is a cruel thief who steals our potential and our futures...and instead hands us a lifetime of lost dreams, homelessness and being subjected to medications which slow our minds and our metabolisms, forcing weight gain, numerous unpleasant side effects and forces an apathy upon us which is pervasive and destructive...and NONE OF THIS IS OUR FAULT. And neither are we granted the palliative effect of ignorance of our losses. NO, we are fully cognizant of what we have lost and it is, in many, a source of unending suffering in itself and often, great sadness and bitterness. OUR LIVES HAVE BEEN DESTROYED AND STOLEN FROM US BY THIS HATEFUL DISEASE WHICH NOT ONLY STEALS OUR CAPABILITIES BUT CAUSES US TO BE MISUNDERSTOOD AN SOCIALLY REJECTED ON ALL LEVELS.

Unfortunately, for many, the obvious source of blame for this is our Creator. The One who "made us like this."And that "fact" leaves many with bitterness and resentment towards and ultimately the rejection of the God who, in truth , loves us passionately and desires to fulfill us on every level, but who has, for reasons of his own chosen to leave us with this challenge...and this disease, by the way, in the fact that it is largely genetic in origin is one of the corruptions of our bodies left by the curse of sin and disease in a broken world. It is one of the things that God looks forward to righting when he restores his creation. It can also be influenced in its inception by drug use, and the rejection of us by our mothers and from a painful, isolated childhood. People, what is at the base of all of these things? Is it a plan of God's original creation? Is it his original intent for us?? NO, SIN and its brokenness lies at the root, very often of this horrible disease. Combine a genetic predilection toward the illness with any of these other factors and the chances are high that schizophrenia will result.

3) Wrong View of Faith (merit-based salvation) Leads to Obsession;

The last point I will discuss here is a factor which does play a role in schizophrenia but which more largely affects those with obsessive illnesses such as Obsessive Compulsive Disorder or merely in an Obsessive personality...It also can impact those with depressive illnesses as well and may augment their suffering. And this is the false idea that it is up to mankind to earn his entrance into God's kingdom and that it is by his own striving and obedience to the dictates of a demanding God that he may be saved from an eternity of condemnation and the tortures of hell. In a person who tends to become obsessed with the repetition or perfection of certain behaviors particularly works and ritual-based theologies like that of the Catholic church may lead to obsessive and overly zealous and truly meaningless and futile repetitions and strivings which will have no effect on salvation but which will only add to the suffering of the person who not only is attempting via huge efforts of strenght, time and will , to earn salvation and a rescue from hell, but also has no real idea of who the true God is or what he is like. The concept of grace (unmerited favor) finds no place in their mind. And because those with mental illness may know not only their propensity to view religion in this manner, but also have experienced or can imagine the suffering and worsening of symptoms such a "faith" would cause, flee from all faith as the very devil himself. And this is just sad; that the God who desires to free them from such mental prisons and misconceptions should be viewed as instead, a SOURCE of them is a great victory of Satan and his deception.

There are probably more aspects which can be touched on, but that is enough for now...
In the next post I will continue to discuss issues of the mentally ill and faith.

Friday, January 14, 2011

Fragmented Faith; God, in the lives of the Mentally Ill

Part One:
Weak Pray-er; Mighty Prayers



The following is a "clip" from a blog post of mine dated June 15, 2009...It describes something I STILL struggle with...even though here, it sounds like I have a handle on it; or at least an understanding of it.

I know that God does not penalize me for not spending hours in intense prayer like I used to do. If all I’m capable of are one sentence prayers throughout the day, surely He is as attentive to those as to the other. Why do I feel guilty, then? Like I’m somehow letting God down or failing my duty? Just because, for this season, my prayers are brief and scattered? God will not expect more of me than I can give. I guess it’s silly to think that somehow we can earn better answers or more of God’s attention by “better” prayers or greater focus. What matters is my intention and my heart before God…if He can understand tongues or the prayer of children or of senile adults; surely He is not hindered by my difficulty…It’s my difficulty; not His. I still feel a lack though. I miss Him and I miss those intense, amazing times with Him that I used to have. But He is still near. And He still hears and answers…all the time!

I know that God hears my prayers...even the half conscious breaths of a desperate, befuddled heart and mind as I am searching for a lost item (and this is how I spend half of every day)...when I finally get really desperate, I do what I should have done in the very beginning (at least I USED to; I glad to report that my cries to the Father come much sooner and more readily now)...I cry out to God in complete frustration, "LORD! where IS it???" And - I know that some of you will scoff at this, others will doubt it...and some will out and out think I'm lying but it is the complete truth - I will "lift up mine eyes...to whence comes my help" and my eyes will land, RIGHT ON THE MISSING OBJECT! I know that some people will say that God is not my divining rod for finding lost objects; that he has more important, more HOLY things to attend to....No He is my DIVINE rod...which always points me where I need to go. Like Moses' staff which pointed across the waters and they watched in awe as the waters parted....my prayer is aimed at God...and the answer comes just as surely as the dry land which appeared.

To some, locating a missing object is a minor annoyance: to ME, however, it is a major distraction, frustration, and a HUGE waste of my time...For I am someone who has lost a good portion of her brain cells to ECT (electroconvulsive therapy: shock treatments) and the other portion to Schizophrenia: a disease which ravages the mind and destroys short term memory...and a final portion to the drugs which are to TREAT said mental illness, but which in some cases, make some of the damages of the disease even worse. And therefore, when dealing with so many strikes against me (not to mention, peri-menopausal fog and the brain fog which is a symptom of Psoriatic Arthritis as well)...you can imagine how great a portion of my day is spent in trying to relocate an object or item that I had had in my hands "just moments ago"...and which now is driving me to distraction by hiding itself from me! And God in his sweet mercy, who cares about every detail of my life, answers those breath-prayers ....which I confess, can sometimes look or sound like disrespectful mis-uses of his name as I cry out: "LORD! where is it??"...Yet he honors even such prayers as these...and helps me over and over. Proving to this forgetful heart again and again, just how much he loves me and is concerned about every detail of my life....

That is one sense in which my prayers are brief...merely the distracted cries of a frustrated mind, and yet he hears and responds. This also serves as evidence to me that when I pray a single sentence for someone..offered with my heartfelt concern for their need...that this prayer is as effective and as pleasing to him as the ones I used to offer, passionately covering every conceivable detail of that person's need before God and seeking his aid. And you know why this is so?? Because it is the best I can offer him right now...True, there are times when the Spirit fills me and I can pray passionate, focused prayers,...and at those times, I am obedient and I do so. But the vast majority of the time, I will think, "I need to pray," and I will get two minutes into the prayer and my mind will take off on some tangent over which I really have no control....and the prayer time is aborted because frequently I even forget what I started out to do...

I used to feel horribly guilty about this. But lately I've been thinking that OGod is gracious enough to recognize my limitations and surely he is adequate in HIS power to overcome the weakness of my prayers! He sees the concern or love in my heart for those I lift up to him...he knows that if I could, I would prostrate myself on the floor and pray all night for them...as I once used to do. And I believe he hears and honors my pathetic prayers....And I believe that I need to stop feeling inadequate and to stop kicking myself around the room because of their weakness. Spiritually speaking they are NOT weak...they are powerful for the tearing down of strongholds...they are my line to my God who is mighty to save. They serve, actually to mitigate any pride I once held at my prayer life and they prove to me over and over that it is ALL GOD and none of me who brings the answers!

One other area of weakness in my forgetfulness and my prayer life is this: ...When someone comes to me as they FREQUENTLY do, as I have somewhat of a reputation of a person who prays...and they tell me of an upcoming medical procedure for example....or a specific event which they would like to have covered in prayer....It is almost a guarantee that I will forget all about it later on...if I do ever recall it, it will be AFTER the fact...I've begun to battle this in two ways...I've bought a large desk sized planner, and I am going to carry a notebook in my pocket book...I must immediately note the prayer need and the date it takes place ...and then the second area of difficulty is to remember to LOOK at the planner each day. But I intend to make this a regular part of my devotions and so hopefully it will soon become a regular part of my day. The next thing I've done at times, is to RIGHT THEN, either pray with the person then and there, or pray for the need silently THEN AND THERE...and trust God that he will put it on his calendar and store up those prayers for the event. I fully believe this is appropriate and that God who dwells outside of time, will apply those prayers just as if they were offered at the moment of need.

In the subsequent posts in this series, I intend to explore other challenges that a life of faith and a relationship with God bring to those who are mentally ill...I hope you'll come back and check them out...I think that they, just as this one does, will hold relevance for even those who are in sound mind.

Thursday, January 13, 2011

When Someone Hurts...

Why is it...that when we suffer, we hide ourselves...as though we'd done a bad thing by feeling badly? We need to talk and are afraid to talk ...as friend recently blogged....because we don't want to look like we're wallowing.

As much as I blog about mental illness and pain (physical)...I haven't begun to scratch the surface of the real experience. My blogs, my talking to people, my chats...although sprinkled with whining...do not convey even a shadow of the truth. Why? Because people can't take it. They either get uncomfortable when faced with pain or depression or discouragement...or a life wasted....and can't cope with the pain it brings to them...and the sense of inadequacy that they feel (if they are really sort of "getting it") and that creates a real awkwardness if you are speaking in person; or it makes them want to run from the source of that discomfort. And often if they even read one intense blog post, or even two....they will not keep returning....Because there is only so much pain, inadequacy, sorrow and despair that a person can take...And if it is OPTIONAL ie: not themselves experiencing it or a family member they are forced to deal with...they simply WON'T...

It's hard when a person refuses to be comforted ( or so it seems.) What people don't understand is that comfort is fleeting and falls miserably short of the actual need. And that, while comfort feels kind of good momentarily....it will fail to really change a single thing. It doesn't remove pain; won't cure mental illness.... Or maybe people DO understand this...and that makes them want to flee all the more. I have a brother who did that.... Fled. From me. Many years ago. His excuse was that there is no such thing as mental illness and that schizophrenia did not explain my behavior years ago. I won't even respond to that here....it speaks for itself.

And I have had friend after friend just quietly slink out the back doors of my life...hoping maybe that I wouldn't notice that they've gone...that they no longer call...no longer answer when I call....that their eyes shift with discomfort when we accidentally bump into each other. They say, "I'll call you...It's been too long since we've talked...mumblemumble ...busy...." But I know they won't call. And they know I know.

I've had other friends...more honest friends who've told me...."Look your life is too difficult for me to deal with. I have to get out of this friendship...." I had one friend tell me I was "too needy" despite the fact that I'd never asked her for anything or even shared with her my thoughts about my experience....I was too needy just because she couldn't deal with my pain. The fact that my need never really invaded her life in any real way did not occur to her. I was merely a tangible reminder of the sufferings of this world...and she didn't want to be reminded.

So where does that leave the person who experiences unmitigated suffering? Well, it leaves them constipated with unexpressed words... And all of that___ has to back up somewhere...And it does. It turns into more pain. It turns into a person, like I've become ...who holes up in their room and rarely goes out, even when I can manage it. It becomes a person who smiles and answers "I'm fine, thanks...how are YOU???" when asked ....because people DO NOT REALLY WANT TO KNOW. Even if they THINK they do...they really really don't. And I've finally come to understand that. And it becomes someone who is achingly lonely and alone with their need.

Now, I have had several exceptional friends...unfortunately, I only know them online...(knew one of them...he died last April). They have allowed me to complain...and have bravely tolerated my expressions of pain and frustration. (At least I THINK they have...they may actually walk away from the monitor when they see any email or chats from me , LOL)...

Other peoples' pain is hard on most people...they either are completely ill equipped to deal with it and don't know what to say in the face of it...or they simply really don't care and don't want to be bothered....or they feel too much for their own comfort and head for the hills to get away from it....Or - a very few, feel, listen and stay. (at least thus far...I"m not predicting beyond today). And these people know that the best thing they can offer me is not to say, "I know exactly how you feel" and then launch into a tale of their own pain...usually, far less than what I'm trying to talk about. And maybe people KNOW that, but want to make me feel like I"m being understood and they are empathetic. Really, the best thing to do is to be honest. If you can't deal with my pain...tell me that...and if you still want to be friends...I'll know to put a sock in it and I will avoid you on days that I can't. If you don't understand my pain, having never understood anything like it; be honest about that too. Tell me, "I can't imagine what your pain is like...but I care. And I'm willing to listen." And if you're feeling really brave, tell them you aren't going anywhere...that you'll be there...to laugh if they feel like laughing , to cry with them if they want to cry...or to do something to divert them if that's what they need. And for pain that is entirely disabling...maybe just sit with them....maybe hold their hand...

I wish I had someone to do that in my life.
I can't think of anything more comforting or more understanding.

Wednesday, January 12, 2011

Physical Limits/Spiritual Freedom

You must have thought I'd fallen off the end of the earth, if you visit regularly or subscribe by feed. The truth is that I've just been really struggling physically and it has taken all of my mental and physical energy to deal with that...and this has crowded anything I might share with you that you would find interesting right out of my mind.

My spinal issues, particularly my cervical spine, have been making me feel really awful...lots of pain...and th cervical issues are causing headaches and dizziness as well as weakness in my limbs and horrific pain. I've been unable to exercise for the past two days, so you gotta KNOW I feel awful for that to be the case. My hips and my neck and my lower back have worked together to discourage and disable me in this regard. I am getting very, very sick of sitting in this recliner. That week of normalcy after my epidural really has spoiled me and made it very very hard to endure the boredom and loneliness that result from being imprisoned in this tiny room.

But whining about it will win me no friends and will do nothing to help my situation...so I'm making a concerted effort not to do that. Instead I have decided that I will seek out things to give me joy and from which I might take gratitude.

I went to my hip surgeon yesterday and it looks like my third hip surgery will take place in early March. We do not yet know if that will be to work on one or both hips yet. The replacement of my right hip is certain....and the revision on my relatively new left hip is dependent on whether or not the next six weeks of exercises help. I'll keep you posted, but won't know anything more until the end of February.

So this where I stand (sit) now...I've gone from being a superwoman athlete (haha...okay, just a person dedicated to exercise) to a disabled person again. And it's a transition I do NOT like. I need to somehow RESIST these changes in my body and to overcome in spite of them...and I'm sure I will (I usually do) but I need to find the right mindset; one of determination and enthusiasm and dedication to the pursuit of health....I know that if I lose that vantage point which I've so carefully cultivated over the past year, my body and health will quickly implode and my house of cards will once more come crashing down.

After I wrote that last paragraph that "still, small voice" came to me and whispered that the mindset I need to cultivate is the Mind of Christ....and his mindset is to be completely dependent on and surrendered to the will of the Father. This may take me to places I don't want to go...but I need to follow him where ever it is he leads me. Because not only is HE the source of life and health ...he is the only thing/person that gives my life real meaning...a meaning that extends beyond this room; even beyond the range of this keyboard....It gives me eternal significance. And nothing this world offers or could offer, could compete with that.

A verse just came to mind which talks about how we are no longer slaves to this world or chained up by our "Body of Death" (sounds like Paul knew me personally!) But are now free in Christ. For me that means that these present circumstances do not hold the power or ability to cause me to despair...And it means that my body is not the definer of my hope. You could remove every ability this body has, and still the promises of God for my eternal hope will apply and be unharmed. THIS is where I need to fix my focus...not on the sufferings of this present time but on the hope that lies before me...and to rejoice in that at all times...in every situation. And to always, in every situation, find something for which to have gratitude. And this decision to focus my mind in these directions is the thing that will save me from deep darkness and despair. It will also, hopefully, keep me from being a despondant whiner and complainer...which would only serve to isolate me further anyway...so best to lose that attitude FAST and to continually guard my heart against self pity.

So, I'm glad for this reminder...that I am free in Christ...that my spirit is not locked up in this hurting body which has forgotten how to move. I'm glad I stopped in to talk to you, because I ended up also talking to myself...and I needed a good talking-to!

Friday, January 7, 2011

Medical and Psychiatric Advance Directives and the Mentally Ill

The topic of Advanced Care Directives.is a topic I've been thinking a lot about as I am facing - most likely - some more major surgery. That is .. I think by now, most of us have a clue what those are and what it can mean if a person faces a health crisis without one...But there is a situation - a particular circumstance - where it is especially critical to have them in place. And, as a study I just read about pointed out, (see the following link: http://www.sparkpeople.com/resource/health_news_detail.asp?health_day=648556 ) those of us who suffer from mental illness are the population who is the least likely to have one of these in place.

Because someone who suffers from a serious degenerative disease of the brain, such as schizophrenia may not be competent to make decisions regarding their health care in the event of a health crisis or simply at the end of life when they may be institutionalized or in a nursing care facility; it is critical that the families of the mentally ill pick up the ball that society has dropped and encourage the mentally ill person to get this need met and to educate them about their options before such a need becomes obvious or felt.

It is important that the consumer (wow, do I hate that word!) be in a period of sound mind when they make these important decisions which have such serious implications at a later time. It is especially important, I feel, not only that they are not psychotic at the time of the deciding but also that they are not undergoing any severe depression, as this can color their choices for a later time when they may NOT be feeling this way. This is all speaking of medical advance directives (which for clarity sake I should define here: These are legal documents assigning the responsibility for decisions regarding the patient's care to another responsible trusted adult in the event that they are unable to communicate or are not of sound mind or sufficient health to make them for themselves. These generally involve end of life care determinations such as whether or not to use tube feeding, ventilators or other life support, whether to have resuscitation efforts suspended, etc.)

And I would here like to make the point that it is really important for a mentally ill adult to assign to someone they trust the right and the responsibility to permanently or temporarily have the power of attorney so that they may take care of the consumer's best interests financially during periods of severe illness. For example, this can extend from merely paying a few bills out of the patient's own funds to arranging for their long term care and the manner of funding it....Obviously this is a big responsibility and should only be assigned to someone who is willing to take it on and who is well trusted. Typically it would be a spouse, parent or close relative.

However, the mentally ill also have other issues that may necessitate their attention during periods of stability that they should really attend to. There is such a thing as a Psychiatric Advance Directive which is just beginning to be legally recognized here in the USA. Only certain states have adopted them and recognize them as legally binding. And even fewer of them allow the patient to exert some control over their care methods such as whether or not to refuse or take medication, to consent to or to refuse ECT etc.. I think, as a person with schizophrenia myself, that this is a critical issue and it is really important for parents, consumers and any mental health professionals who would do so to speak up and get involved in pushing for legislation to introduce the legality of these documents in a widespread manner of acceptance across our country. The following link is a great article put out by NAMI which describes and explains what a PAD is and how it works....http://www.nami.org/Content/ContentGroups/Legal/Advance_Directives.htm .

I know myself that there are certain facilities which I would rather die than be admitted to again. I also know that in times of psychosis, I will deny my illness and refuse medication...and that I also frequently need to be restrained. NOW, in a period where I am well, I have opinions about the specifics of these issues: facilities, which types of medication, what type of restraints, and whether or not to "encourage" me to have ECT...all of these I would love to have some control over NOW while I am coherent and reasonable...and I think it is great that some states have approved such things and I applaud them. We need to encourage this in all states! Because face it, a person, when they are lost in a psychotic episode and hospitalized in a facility, is at the mercies (or lack of them) of that institution and it's employees and you as the family member really do not have any idea of, or control over, what is happening to them from the point of their hospitalization onward. And they, because they are not rational or in control of themselves, have even less control over what happens to them than you do. They (we) are often victims of inhumane treatment or forced to undergo treatment which will leave lifelong scars on them (us), not only emotionally but often, cognitively.

The following is an excellent form in PDF format which gives a sample PAD (Psychiatric Advance Directive) which I believe you may print out, fill out and then have notarized -EVEN if you live in a state where they are not recognized yet legally, it cannot hurt to have this on file with your family or caregivers so that, in the event of a mental health emergency they have your wishes on file and they may (or may not) be regarded and honored. http://www.nami.org/Content/Microsites59/NAMI_of_Southwest_Louisiana/Home56/Resources12/Advance_Directive_for_Mental_Health.pdf

So think it over and NOW while there is opportunity, take charge of your future! You never know when life can throw you a curve ball, and if you wait til the pitch is thrown, it is too late!

Monday, January 3, 2011

Can I do this Again?

As I mentioned to you in prior posts, I had an epidural in my spine three days before Christmas. That (for those who may not know) is an injection of steroids directly into the spine...the needle must be inserted into one of the gaps in the spinal column for it to be possible. Fortunately for me, it was done with "Twilight Sleep" which is another name for "I don't know a thing about what's going on because I'm completely asleep.")

This procedure was fairly unlikely in it's chances of even getting carried out....because well, I don't HAVE many openings in my spinal cord and the ones that are there are teeny tiny...being increasingly narrowed by the Psoriatic Arthritis that I suffer from. The arthritis is narrowing the spaces where nerves and the spinal cord itself must travel...so that the spinal cord is becoming flattened by the encroaching bone.

I'd had several other doctors attempt this procedure in the past, only to give up, defeated by the mess back there. But by somehow managing to go into my spine from the side, my pain management doctor got the needle in and was able to inject said steroids. Well, I awoke and immediately tears came to my eyes as, for the first time in over twenty years, my back did not hurt. And for the first time in two or three years, I did not have to fight the urge to scream from the intensity of the pain. It was amazing.

And although I still had some sharp twinges here and there, probably from my herniated discs causing a ruckus as I was able to move about more freely...the lack of pain continued.

For a whole week.

Then it started gradually coming back, and I knew, with a sick sinking feeling that, despite the success of the procedure, the epidural itself was a failure.

And last night, as I was awakened from a deep sound sleep by the intense pain in my back, I knew, once I'd gotten fully conscious that "IT"S BACK" and once again I fought the urge to cry. Now, because my relief had ended.

So the relief came in and went out heralded by tears. And today, I struggled all day with the question, "Can I really DO this again??" Because, let me tell you, it was GREAT to pick up a laundry basket...and to exercise, and to sit through church, and to do a million things that I hadn't been able to do in some years. And I really could - and did - get used to it.

And that was a big mistake.
Because my relief was so great, I also assumed it was long-lasting...I believed that it would carry me through the 3 months that it was supposed to work ...and was, and am, crushed that it didn't. Now I'm not a "pro" at it anymore. How quickly we forget pain and how to survive it, once it's gone for a day or two. Gone like a bad memory.

I did think occasionally of it and the end of it during my good week. I wondered if I could manage to go back to living in a recliner and hospital bed all the time. And the thought was so repugnant that I didn't wait for myself to answer but quickly changed the topic of thought.

I was really stupid.

Is hope ever stupid?

Well, maybe I should just take the gifts I got from this experience and savor them....
Like, now I know that I'm in pretty decent shape as far as strength and cardio endurance go...because in my workouts this past week, I amazed myself at what I could do without much pain. (Note: The steroids do seep into your whole system so therefore my pain from the PsA was also greatly alleviated...as was my cervical spine pain.)

And now I have the memory of a Bible Study gathering in front of the gi-normous Christmas tree and the crackling woodstove as we sang carols and ate cookies...and this without being sullied by pain.

I was able to be up for Christmas Eve dinner with my parents at my house...with only a little pain (of course, I did have a BAD case of steroid insanity but that only lasted for that one day....................It did, right???).

I was able to spend a long day out shopping, errand running, and mall crawling in relative ease.

I slept...in fact the HABIT of awaking at 12:00 was so ingrained that it was several days before I could get over that and sleep any later. I will probably miss sleep most of all my losses. No, that's not true. I would trade a LIFE for sleep any day.

I even was able to do a bit of yoga. And even got down to the floor and up again...with little trouble.

Shoot.

This whole list was such a bad idea. Because all those "gains" are now my "losses."
I don't know what more to say.
Pain just plain sucks.

Sunday, January 2, 2011

Have a Seat; Let's Talk...

An update, for those of you who may have joined your prayers with mine for the sad woman in the prior post. God answered in a big way. He granted her sleep that night, at a critical point in such a way that she KNEW (although I believe she has not yet met God as her friend yet...), she recognized the hand of God and knew that it was an answer to the prayers of those who were praying for her that night. ((Edit: Please look at the comments. I was wrong in my assumption.))

Please continue to pray for her. The crisis is not over...merely in abeyance for the moment.

As for me; as for where to take this post...I'm in a state of confusion about both of those issues.
I've still been enjoying some relative relief from pain due to my epidural injection. Although it is slowly creeping back. And yet, I'm hurting from the bad situation in my cervical spine, which they were not able to treat with injection...not without ceasing my breathing with the anesthesia.

Still, it is nice to have half the pain rather than the full 150% !

I was reviewing my goals and setting some new ones for 2011. I won't share them all with you...but largely I took care to pay attention to all three components of my being: Spirit, mind and body. My desire and my focus in the past several years is to find a place of balance among these three...because wholeness is an area that God has impressed on me...We are comprised of all of these and he cares about one AS MUCH AS THE OTHER...as long as our first priority is to LOVE HIM WITH THE TOTALITY OF EACH OF THEM.

As he said in the Shema: "Love the Lord your God with your entire heart, mind and strength (or physical being)." and Jesus added in the New Testament that this is the first (of primary importance) and the greatest command given to us by God.

So I wanted to shape my goals with that in mind. I wrote those three areas out and then categorized my goals so that they were listed under the appropriate heading.

Some of my goals (I won't list them all) are:
  • To find an accountability partner for spiritual advice and confession ... and to give honest feedback to me... I'm not sure who that will be because there's no one in my life who is around me enough to be able to do that...save maybe one...I will have to pray about that.
  • To reach my goal weight in my ongoing program to get to a healthy weight. I've lost 50 pounds thus far and ideally would like to lose another 30-40 pounds.
  • To continue to exercise as I have been doing and to seek other means of remaining active even when not "exercising."
  • To continue to read and to maintain a list of the books I'll have read in this year.
  • To begin and to complete the online distance learning program in Integrative Nutrition and to get my certification as a Health Coach. Part of this depends on whether or not my funding goes through...but that will have to be a matter of prayer.
And the others involve mostly either a new discipline or a continuing practice of a familiar one.

I hate the term "resolutions" as I've probably mentioned in the past. Mostly because they have become either a joke or a means of a desperate attempt to rescue something gone horribly out of control. And while all recoveries begin with a decision....I think it unlikely that many of them were "New Years' Resolutions."

Last year, early in the year, (whether it was New Years or not, I do not recall) I decided to get a handle on my eating and to begin to attempt to pursue a healthy lifestyle...and while that decision took several months before it really gelled into a determination....it stuck...and I've done and am doing that. Granted I still struggle with disordered thinking due to my eating disorder (ED) and this is a battle I will fight probably for the rest of my life. But it's one worth winning, so therefore it's worth fighting.

Well, time to gulp my coffee and get downstairs and get moving with my cardio workout. It's been nice chatting with you this morning.
Blessings.