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Hopeworks in retrospect

Posted Jan 03 2010 6:48pm

In 3 days Hopeworks will begin its third year.  The website has prospered far beyond our biggest dreams.  Many people have been very kind and very supportive.  The last week we have had 13, ooo visitors which is by far our most ever.  We appreciate all the comments and interest shown by so many people.  By way of  retrospect the first three posts of the site are reprinted below.  They talk about things like diagnosis, hospitalization, and how we as  family coped.  They tell how things started for us.  Thanks again for all your support over the first two years.

About us- The elephant in the room

Larry and Linda DrainFor too many years hope seemed like a cruel illusion in our life, forever being dashed for reasons that we never clearly understood, but yet seemed always there.
 
Something was always in the way.  Life often seemed like little more than waiting for something bad to happen.  It seemed like there was an “elephant in the room.”  We couldn’t really see him, but there was no mistaking the path of destruction that he left.
 
July 11, 2007.  That’s the day we found out the name of the elephant.  Linda was bipolar.
 
 
It’s not that we didn’t know about coping with bad things because we did.  LInda had been born with epilepsy.  Seven years ago a good day was 10-15 grand mal seizures and there wasn’t always a lot of good days.  Medicine after medicine seemed to have little effect.   Sometimes it was not clear what was worse: the seizures or the side effects of the medications.  Hope always rested in the next new thing.  Life for Linda was like living in a cloud.  Clouds though are supposed to go away.
 
Finally she got hurt really bad.  She fell down a flight of stairs during a seizure, hit her face on the banister and literally broke her face.  She looked like I had taken a baseball bat and beaten her half to death.
 
The neurologist finally figured out what we already knew.  No medication was going to help.  Brain surgery he told us was the only option short of becoming a vegetable or dying.  Linda had her amygdala and hippocampus removed and the seizures went away– for a short time.
 
When they came back they came back with a vengeance.  Four years later she was in Vanderbilt Hospital with seizures worse than ever.  The seizures, thank God, now seem under control.  They are still there but no longer does Linda measure her day by the seizure count.
 
The surgery took Linda to a place she had never been before.  Disabilities that had never existed prior to the surgery now defined her daily life.  Her short term memory was shot and she began to have problems struggling to learn anything.  She couldn’t concentrate.  She was easily distracted and easily overwhelmed by the stimuli around her.  She had loved to read all her life, but found at times now she had no comprehension.  She could get lost going from one room to the other.  And that was just the tip of the iceberg.  She was told she had a new label– traumatic brain injury.
 
But there was something else wrong and we knew it.  Linda was a good and kind person, but at times she was seemingly drowned in moods that overtook her and hijacked her to a place that sometimes we wondered if she was coming back from.  We explained it in terms of seizures, of surgery, and when all else failed medication side effects.  We had so many explanations that we never bothered to look right in front of us.  There were a lot of red flags but we were color blind.  My kids and I learned not just to walk on glass, but that there was glass everywhere.
 
Linda had gotten a vagus nerve stimulator implanted in her chest to control seizures.  It had never really worked and was giving her lots of problems.  She talked to doctors about getting it out, but never felt like they listened to her.  It was a point of growing stress.
 
On the night of July 10 I got several hysterical phone calls from her.  She told me that she was fed up with them lying to her and if they wouldn’t take it out she would.  I didn’t take her serious.  After all, who cuts open their own chest?
 
She was asleep when I got home from work and it was the next morning before I found out what she had done.  She had cut a large gash in her chest and then taken a hammer and beaten herself in the chest trying to break the stimulator.  Her chest was black and blue and badly swollen.  She started up again and I told her if she didn’t stop I would call the police.  She took off out the door.
 
I helped the police search for over 2 hours.  I thought she was dead.  Finally we searched the house one more time.  We found her hiding in a closet.  She scared the police officer so badly he almost took out his gun and shot her.
 
She went into a psychiatric hospital.  We begin to get answers.  It all seems so obvious now.  Linda believes the bipolar disorder had been there a long time, just hidden by a thousand other battles.
 
There is something about being able to call things by their name that gives you freedom.  What you can name you can see.  What you can see you can live with.  What you can live with you can triumph over.  We have begun to find answers to questions long unanswered.  Hope we know now need not be wishful thinking.  It is real and yes hope does work.  Our most profound wish is that you and your family may find out the same thing.
A culture of disregard–life on the ward

My wife was recently a patient on a psychiatric ward.  The first night she went to get her seizure medication.  One of the medicines—lyrica—was not there.  When she asked for it she was told, “No, you can’t have it.  It’s not an anticonvulsant.  It is a pain medication.”  When Linda protested and told them she had been taking it for 8 months and it had been prescribed by her neurologist she was told, “It doesn’t matter what outside doctors say, only inside doctors.”  The incident while extreme, illustrates a truth common to the experience of many psychiatric patients.   The message is given to them everyday in many ways:  “ What you think, what you know, what you want is  not nearly as important as what we think, what we know, and what we want you to do.”  There exists in many psychiatric wards a culture of disregard, a system of beliefs and practices, sometimes unspoken, but always there, which legitimizes the power of one person over another,  and excuses much of what he does as being for the “good” of the other.

 

The discussion below is borne primarily of my wife’s experience on one ward.  I am not saying that the criticisms I make are necessarily true of all psychiatric wards.  It is not the way they must be.  I am saying that what was true of Linda’s ward is true to some degree of too many other wards.  I have worked for 35 years in the mental health field, both in and out of psychiatric hospitals.  I have known and worked with many caring and dedicated people.  In describing my wife’s experience though I have had to re-look at much of my own.  Much of what I have seen is more than a little uncomfortable.  Too many people leave psychiatric programs diminished by the experience.  They walk away convinced that life will probably never get better and if anything is only likely to get worse.

 

When treatment programs work they help patients to find hope.  Without some sense of hope not much else really does work.  Treatment is supposed to tell people who believe life is too hard and that nothing is likely to make much of a difference that they are wrong.  For many patients hard times have been a constant companion and seem, regardless of what they do or how hard they try, a certain destiny.  Patients should leave the program feeling like they have “more” than they came in with.  Treatment should open opportunity, not deepen deprivation. 

 

Hope was one of the first casualties on Linda’s ward.  All relationships on the ward were based on power.  The staff had it.  The patients didn’t.  Linda  described to me the ritual of going to the nurse’s station to get meds or personal needs met.  Patients would go to the nurses station and wait to be noticed.  This usually took several minutes since the staff was often “busy” talking to each other.  During the 7 days that she was there Linda told me that she did not remember a single time when a staff member saw a patient coming, anticipated the need and talked to them without first making them wait.

 

This gives a clear message.  If your needs must wait on my convenience then you really don’t matter much.  Patients learned quickly that your value was defined by the staff.  Follow the rules, be where you are supposed to be, do what you are supposed to do, and above all else, don’t cause any trouble.  That is what it meant to be a good patient.  Fitting in was the key to success.

 

Even the “craziest” people learned not to make waves.  Linda was trying to tell one lady that she thought God would be there for her.  The lady was obviously psychotic and having a hard time.  A staff member overheard the conversation.  “Shut up.  That is an inappropriate conversation.”  The most amazing thing was that this “crazy” lady turned to Linda immediately,  “We need to quit.  It’s not worth the trouble.”

 

Patients learned quickly to be careful about expressing their thoughts, their feelings, and their needs.  There was not one single staff that any of the patients felt comfortable in talking with about anything of importance.  Trust between staff and patients seemed almost an irrelevant ingredient to daily life on the ward.

 

As much as anything else hope died in the overwhelming boredom that was the most certain feature of the day’s schedule.  Every patient had to deal with a regimen of enforced passivity.  Their choices were simple.  Sit in the group room and watch TV or go to your room and sleep.  Individual counseling was an illusion.  Groups were few and no threat to anyone’s favorite TV show.  There was basically nothing to do and nothing to look forward to.  Meals were the high point of the day. 

 

Boredom seems endemic to many treatment programs.  We justify it by referring to the need for structure and tell ourselves how much patients really need it.  At it’s most pervasive it is a soul-killing and mind-numbing monster.  When people drown in boredom they no longer strive for a better future, but pray to survive an awful present.  Depressed people, as many psychiatric patients are, usually find no reason internally to be hopeful.  When the external environment confirms their internal gloom the result is a grim existence.

 

There was nothing to do on the ward to have fun.  No games. No activities or events.  No resources.  No nothing.  It is a curious logic that takes internally impoverished people and places them in an impoverished environment and then tells them the only answer to their unhappiness is medication.  You stop wanting  for things to be better when the message of daily life is that it is pointless to want anything.  Boredom cannibalizes hope and leaves the future stillborn.

 

It is really hard to develop hope in life if the important people in life are not hopeful about you.  On the ward it was a blessing seldom given.  It is hard to bless people you don’t  talk to and impossible to bless people you don’t notice.  Discouraged people are discouraging to be around.  Staff gets to the point where a day survived is a good day and the vicious cycle just keeps spinning.  Patients learn over and over again that they are defective.  Instead of being people dealing with extraordinary circumstances they become defective people who mess up all circumstances.  The purpose of treatment is to give people a new lease on life, not to destroy any hope of a better life.

 

Everything in life is either a source of opportunity or source of deprivation.  The ward had no promise, built no confidence, and bred no courage.  It told patients that life offers you nothing more than you already have,  and that they were alone with no real chance of a life worth living.  Many people live a lifetime of what Linda lived for 7 days.  For too many the psychiatric system offers only a way in and no way out. 

 

From my wife I learned much of what I know about courage.  She has survived serious issues with epilepsy, a brain surgery which has left her tragically disabled in many ways, 4 abdominal surgeries, and bipolar disorder.

 

She maintains hope where I confess sometimes I see little.  With every reason to quit she has found every reason to live.  She has known despair and had to fight for the life she loves so much.   She has stumbled more than once.  She has always stood back up.  She remains an ordinary person coping with extraordinary circumstances through God’s grace. 

 

My wife reminds me of something a friend once told me.  He had a wife with brain cancer who was supposed to die after 6 weeks who was still going strong after 6 years.  “Larry me and you are lucky.  People search their entire life for proof of God.  Me and you get to see his miracles every day.”

A time of sorrows, a place of great hope

Your prison is walking through this world all alone.

                               The Eagles

                                “Desperado”

 

 

 

 

My wife Linda was diagnosed as bipolar in July 2007.  She was 52 years old and had probably been bipolar for most of her life.  Like so many people with bipolar she went through years of not knowing.  She knew there was “something.”  We all knew there was “something.”  After all we could see the path of destruction “it” left in our daily lives.

 

This however is not so much about Linda.  It is not really about what the family can do to help someone with bipolar.  Both are mentioned, but neither is the focus of what follows.  This is about me and my kids.  It is about our journey through a force that has tried to ravage our lives and destroy us.  It is about, as strange as it sounds, finding hope in bipolar disorder.  It is about our movement through a time of great sorrows to a place finally of great hope.

 

I am not going to tell a lot of stories although there are plenty to tell.  Drama is never in short supply when you live with bipolar.  After a while, in fact, it even starts to lose some of its impact and you find yourself looking at some of the strangest things as “just the way things are” and business as usual.  As a family we have survived more suicidal  gestures than we can count or remember.  There have been just as many manic episodes. 

 

My wife, despite all that has happened and all that has been done, is still the kindest person I have ever known.  The kids would tell her in the worst of episodes that they knew that what happened was not her.  I would see her go to “other places” and just pray she was coming back.  Linda would torture herself with guilt and self-recrimination and pledge to try harder.  Trying harder really never helped.

 

Coping with a bipolar person I learned was in a very real sense a battle for what controlled your soul.  I look back and see so much I am neither pleased with or proud of.  I remember when all I really cared about was feeling better and was not really there for my wife or kids.  I know of times when I was just numb.  I know of times when I was vengeful and angry.  I can remember thinking after one close call with a suicidal gesture, “If she is going to do it I just wish she would get it over with.”

 

There is a line in Proverbs which says, “Guard your heart, for it is the wellspring of all life.”  The bipolar experience was an assault on our hearts.  I think all of us in our own way prayed that God would give us the strength to keep our love constant each day.

 

The hardest thing was not knowing.  You can cope with anything you can give a name to and for many years the elephant in our room had no name.  We looked everywhere for answers, but just forgot to look in front of our face.  Linda had serious problems with seizures so we blamed the seizures.   She had medication with serious side effects.  We blamed the medicine.  She went through a brain surgery that left her with a whole host of disabilities she didn’t have before the brain surgery.  We blamed the brain surgery.  Doubtless all of them contributed to things.  But they were not the explanation.  We found we had so many explanations we could not explain anything.

 

I am just beginning to understand my role in sustaining the mystery.  I went through a process which I think a lot of people go through.  The process was painful and messy.  Yet it got me to where I am today and for that I am grateful.  My hope is that in describing it maybe I can help someone else’s journey to be a little less painful.

 

The beginning of my journey was denial.  I simply refused to believe that Linda might have a mental illness.  I grabbed hold of every other explanation possible and refused to let go.  Her neurological problems were real.  The side effects from medications were real.  I spent years trying to explain everything as a function of the two.  Even when Linda was saying that she needed “help” I refused to believe it.  Her father had been abusive to her and what would not fit under seizures or medications I found room for under childhood abuse.

 

Somewhere in this process I moved to bargaining.  I decided that if I could figure out what “set her off” and just control these things that everything would be better.  My answer  was to try harder.  If I could just try hard enough everything would be okay.  I tried to get the kids to “be good.”  I was too desperate to understand they already were good.  I decided if I could do a good enough job in protecting Linda from life that life could not help but be good.  Trying hard seemed like it sometimes worked in the short run, but in the end it too failed.

 

When I found out making  a deal didn’t work I just became angry.  I don’t think I was ever much of a yeller or screamer kind of an angry.  I just felt very cheated and was very resentful.  I was a quiet person and become a quiet furious person.   I went from everything being my fault to everything being Linda’s fault.  It seems so silly now that I ever believed either one, but once I found a way to believe both.

 

Finally I think I just gave up.  I resigned myself to what seemed like a terrible present that would only be followed by a worse future.  Trying to make things better didn’t really matter, because no matter how hard I tried or how much better I made things nothing really changed.  Linda still “went away.”  My heart broke each and every time, so finally I just decided to just resign myself to the inevitable.  When the screaming started, when the crazy times came I just hoped they would be over soon.

 

This description really doesn’t do her justice.  The bad times came and went.  But there were so many good times.  Linda loved God.  She loved us.  She loved life.  And with so many reasons to quit she never did.  She would “go away”, but in a sense we did too.  Thank God for the grace that always allowed all of us to find our way back.

 

The processes that I have described were not discrete processes either.  One did not end and the other start.  In some sense most of these processes were always there.  Sometimes they stood out.  Sometimes they didn’t.  Sometimes for each step forward there were two or three back.

 

Finally Linda had a really bad episode.  She tried to cut a VNS device out of her chest.  She was diagnosed as bipolar.  When she told me about the diagnosis she cried.  She was just relieved after all these years it had a name.  When they described the symptoms of bipolar to her she said she just screamed, “Oh my God it’s me.”

 

Hope is really tied to knowledge.  Without knowledge anything we place our hope in soon falls.  The beginning of real hope for us was in the knowledge of where we were and how we got there.  With that we begin to understand that we could really influence where we went.

 

We have always been forgiving people I think.  That has really helped.  It has also made the journey to a place of hope possible.  The past is often bad enough.  Trying to fix it by spending energy in figuring out who to blame and how to get them back just adds insult to injury to insult to injury and on forever.

I hope that your journey can be quicker than mine.  I hope that there can be less tears and less pain in the path you walk. 

 

I hope that God is with you as he was with me and my family. 

 

Thank you and God bless

 

 

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