October 10, 2006
Alanon's 'Letting Go' Versus Mine
The mother of a son with schizophrenia on 'Letting Go'
I learned the previous words on 'letting go' through Alanon. I understood them and practiced them. Then my son was diagnosed with schizophrenia. I have been struggling for nine years to apply the principle of letting go to this disease and my life.
How do I apply the principle of letting go to schizophrenia?
Show me the services designed to address his disease. Give him the skills and tools he needs, so I can let go.
Alanon's "LETTING GO"
"Letting go does not mean to stop caring;
it means I can't do it for someone else."
What does doing it for himself mean if he can't fathom the process needed?
"Letting go is not to cut myself off;
it's the realization I can't control another. "
How do I continue to be available when my availability is viewed through the skewed eyes of a disease that often sees me as the enemy through no provocation of my own?
"Letting go is not to enable;
but to allow learning from natural consequences."
What do 'natural' consequences mean to someone who keeps making the same mistakes over and over expecting different results? Forgetting the lessons?
"Letting go is to admit powerlessness;
which means the outcome is not in my hands."
How productive is the acknowledgement of my own powerlessness over a disease that has no cure? It is a feeling we parents are struck with on day one that never, ever leaves.
"Letting go is not to try and change or blame another;
it's to make the most of myself. "
How do I make the most of myself when no one else is willing to recognize the actual need for assistance in his life?
"Letting go it not to care for;
but to care about."
How effective is just caring about my son without caring for him when his disease and the disenfranchised system of care deems my care giving as necessary?
"Letting go is not to fix;
but to be supportive, not to judge, but to allow another to be a human being."
What are the boundaries between letting my son fix his own problems to the extent he is capable and stepping in to teach and teach and teach him how to do it on his own?
"Letting go is not to be in the middle of arranging the outcome; but to allow others to affect their own destinies."
How much can he effectively affect his own destiny? How much of his destiny is in his hands when he is so easily controlled and used up by others?
"Letting go is not to be protective;
it's to permit the another to face reality."
What does reality mean to someone who accuses one of the only people in his life who has never betrayed him of doing just that because paranoia rules his emotions?
"Letting go is not to deny;
but to accept."
How much does lack of insight limit his ability to accept his disease? Who's responsibility is it if he can not? Who's responsibility is it to call 911?
"Letting go is not to nag, scold, or argue;
but instead to search out my own shortcomings and correct them."
How many times do I have to take an inventory on my own shortcomings, dig back in, revise my behavior, try again to meet only what is NEEDED of me, before I do just give up purely out of a need to survive ?
"Letting go is not to adjust everything to my own desires;
but to take each day as it comes and cherish myself in it."
How do I cherish myself in my own life, when it is constantly interrupted by yet another crisis in his?
"Letting go is not to criticize and evaluate anybody;
but to try and become what I dream I can be."
How do I avoid criticizing and evaluating him when almost everything I say is perceived as criticism?
"Letting go is to not regret the past;
but to grow and live for the future."
How can I live and grow for my future, if I don't do everything I can to help him do exactly the same? My independence depends on his independence.
"Letting go is to fear less and live more."
How do I learn to fear less with a son who has become one of the most vulnerable people the world knows because of a disease?
Nine Years Later
October 4th, 2006 is the anniversary of my son's diagnosis. It has been a rough year for me physically. Two trips and falls, torn knee cartillage, surgery, physical therapy, and just when it was safe to come out of the water the second trip and fall resulted in a broken shoulder.
My house is empty now, except for my husband and myself. I have had a lot of time to think and feel:
There can be life after the diagnosis of schizophrenia in a loved one. Things will be normal again one day. You will adjust eventually. It just won't be the same normal you once knew. It will be a new normal. It will be YOUR new normal and no one else's. Efforts to hurry or force the adjustment will only drain you. It will come in it's own time. Each individual's own unique set of circumstances delineates far too much to this end to ever lead any one to believe there is a defined length of time. So try to be easy on yourself. You have more than enough to adjust to.
For some of us it is a roller coaster ride. For others, it feels more like a merry go round that never stops. But you can learn to to hold tight and to tolerate the ride. You can also choose to get off. Everyone has to make their own choice as to what is right for them.
Try to process your fear with the same compassion you would for any one else. You will be dealing with a lot of it. Yours, theirs, your family's. Remember it rears it's head in many forms: anxiety, panic, paranoia, anger, fight, flight, freeze or feign. Remember to 'act as if'' when you find yourself wanting to surrender to self sabotaging behavior. Get yourself through those moments somehow with as much grace and dignity as you can muster. Remember that fear is the underlying emotion of so many of the emotional states you and your loved ones will find yourselves in. Fear is always the underlying form of anger. The definition of guilt is fear over past events that did or did not happen. The definition of worry is fear over future events that may or may not happen. Whenever you are feeling guilt or worry, you are either in yesterday or tomorrow. You are not in today. Take some deep breaths, in slow and deep, out slow and full. One day at a time. One moment at a time. One breath at a time if that is all you can handle.
Don't fall prey to using this as a license to only focus on today. Plan for tomorrow. Inventory yesterday. Don't ignore the past or the future. Just don't let yesterday and tomorrow eat up all of your todays. Schizophrenia takes planning, forethought, goals, and education. Learn as much as you can about the disease, the treatments, and the services available in your area. Plan things with your son or daughter. Give them the gift of knowing they have a future. Honor their past.
The system of care itself can feel more like a revolving door. You will discover far more of the responsibility falls on your shoulders than you ever imagined in the beginning. But you can grow shoulders broad and wide and learn that you are also much stronger than you ever knew. Wisdom can come in droves, with moments of clarity and "Ah Ha's!", only to be interrupted with periods of total confusion, frustration and stress. But you can learn to become a pro at finding needles in haystacks. Never stop demanding the system do it's job!
This disease can mop the floor with you if you let it. But don't. Remember to take care of yourself. It may feel as though you have nothing more than brief stolen moments left to yourself. But steal them any way. Never give up trying to find time for you. Ask for help. Get those time out's. They are necessary. Take a hot bath, listen to soothing music, or rock the house till you feel like dancing. Whatever works for you. Find some way to put the focus on your needs.
It will feel difficult and uncomfortable to socialize at first. But socialize any way. In many ways this disease is a jumping off point in your life. Many beliefs, perspectives, priorities and even friends will re-arrange and shift guided by the awareness you now have. Schizophrenia changes everything, including us. You'll feel like the new kid on the block a lot of the time. You will find yourself gravitating in new directions in many areas of your life. You will discover there are people with hearts of gold who have been waiting to find you. Friends who will listen, understand, support, and help you. Friends who know how you feel. And you will discover others still who are just waking up to the journey you are already traveling. Bring them a covered dish.
Take the time to grieve. I can not stress this enough. It can paralyze you with depression if you don't. Cry, sock a pillow, kick the couch, say it out loud, make someone listen, beg and pray for your miracle, whatever it takes and as many times as it takes. Refuse to be ashamed of grieving your losses. See a therapist if that is the tool that carves out enough time for you. If you can, take medication if the depression or sleepless nights don't lift. Schizophrenia hurts.
Remember to catch your loved one succeeding, no matter how small and insignificant the progress seems by comparison to their former achievements. Any forward movement is big and takes gargantuan effort on their part. Any break throughs are cause for celebration and fortifies hope.
Don't blame yourself. This really is a disease. Although it seems impossible at times not to, get yourself out of this stinking thinking by reassuring yourself it is not your fault any more than diabetes, a brain tumor or any other disease is. Don't buy into it when someone else implies it. Recognize ignorance for what it is. Part of the human condition. Walk away, shake it off, give it back, or .... if you're up to it ..... take the time to educate and raise their consciousness.
Find a hero. Mine is my son. My losses, fears, lessons, successes and failures, and roller coaster rides all pale in comparison to his. He is the strongest person I have ever known.
Never give up. Never, ever give up. And if you do, remember .... you can always change your mind and start over. You still have choices. No decision we ever make is carved in stone. Everything can look better in the morning. All it takes is someone who knows how you feel. Someone who gets it. Someone who can offer you hope. Who knows what lies in store? None of us do. A cure, or a better medication could be just around the corner.
And if you succumb to the devastating loss of your loved one through suicide or victimization, remember we all know how valiantly they fought to live with this wretched disease. Find some measure of comfort in knowing you are not alone in this regard. They will always be with you in spirit throughout the daily makings of your survival until it is time for you to leave. Honor their lives and try to make your own difference in a world that can seem so detached from people who suffer.
Always remember, no matter how lonely this journey can feel, even when the people you count on the most let you down and disappoint you, YOU are NOT ALONE!
July 09, 2005
Dear Oprah.....Another Letter
I'd gladly trade anything I posess without a moments hesitation for just one chance to tell the world that people like my son are suffering from one of the most frightening and misunderstood diseases a human being will ever have to survive. And that parents like me are suffering too. I want the world to know people like my son and their families are surviving schizophrenia in spite of living in a world full of stigma, myth, systematical discrimination and persecution. I want a chance to change that.
I survived an alcoholic, abusive upbringing. It wasn't my fault, but I knew it was my responsibility to heal from it. I worked on my inner child, my marriage, my parenting and I relied on the Oprah show during the 80's as a trigger to know which step or issue to tackle next. Years of hard work delivered me to a place of joy and happiness I had never known was even humanly possible.
I had it all. A strong, intimate marriage, two strong wonderful sons and our own land lording business. I used the skills I acquired from all my hard work in recovery to obtain what was closest to my heart: A healthy family. It worked. I was so happy.
Then on October 5th, 1997 everything I had fought so hard to accomplish came crashing down on me. It felt like someone had taken an axe and split my life right down the center. My oldest son, was diagnosed as a paranoid schizophrenic.
It came out of the blue, without warning. I watched my son unravel and come undone in front of my very eyes. I have never felt so powerless in my life.
There are no words to describe the horror I felt in knowing the terror my son was experiencing. The urgent need to help alleviate his terror manifested in numerous attempts on my part to find something, anything, other than just medication to help him.
I spent the first two years praying for a miracle. Knowing he deserved one and so did I. Knowing that we all do. Knowing that sometimes the answer is 'no'.
I also spent immeasurable hours reading every book I could get my hands on, researching the disease. Believing there was a solution and that I just needed to find it, I hired a massage therapist. We also tried chiropractic, hair analysis with a renowned medical doctor who recommended various vitamin and nutritional supplementation for 8 months, Edgar Cayce's wet cell battery treatments, meditation, prayer, all in conjunction with anti-psychotic medication.
But there was no improvement to be found from any of these remedies other than what the medication itself incurred. It is the only tool we really have to stop the terror.
It felt like my son had died and I never got the chance to go to his funeral. I never got to say 'Good Bye'. In addition to the lack of the formality of grief and all of the human rituals that allow for it's expression, I was forced to immediately turn on my heels, dust myself off, get back up on my feet and pick up the pieces of not only my life, but my son's life as well. This being difficult enough, I couldn't believe I was also being asked by the nature of this disease to live with the ghost of my son. Through unrelenting trial and error to find him help I also learned it would be up to me to take good care of that ghost too. The help just wasn't out there.
For the families, schizophrenia is a double edged sword. Our hearts are constantly breaking over and over with the episodic roller coaster we ride. We need to grieve, yet there is so little time for it. There is far too much work to be done. We have to keep putting one foot in front of the other despite our incredible guttural urge to to just fall on the floor in a surrendered heap of sorrow.
Schizophrenia changes everything. That includes me, my husband, his brother, our social life, our future, our finances, but most of all my son Nathan. My son is the most courageous person I know. He has a sweet, sweet spirit and a gentle loving and kind heart. Knowing this only made his terror all the more frightening to me.
Because of my son, his strength and perseverance, his unstoppable movement toward independence and stabilization, his perennial search for positivity and growth, I his mother have found reservoirs of strength and endurance I never knew existed.
Because of this disease, I am acutely aware that far too many people haven't a clue what is really going on in families like mine.
There are thousands of websites out there that portray the availability of services to people like my son. Truth be told, the budgetary cuts have eliminated most of the services to our loved ones. Someone forgot to note this at the websites though. The system of care is disenfranchised, hiding in a haystack, underfunded and all of this is OK to far too many who have the authority to commit to services. Simply because to them in the grand scheme of things 'our children do not really matter. We'd all be better off if they did commit suicide, end up in prison or anything else that would remove this scourge from public responsibility'.
The families are the ones who do most of the work. Because of this we fail miserably at making a dent in raising awareness or advocating on a broad in depth level. We are exhausted, drained and overwhelmed by the tasks of care that have been laid in our laps. We are not qualified. We do not possess the credentials to service the disease called schizophrenia. Yet, we are forced to scramble to find the right tools to do just that and become the experts our children need to get better.
And then there is the drain. The drain of the disease itself. If you could somehow photograph the energy, you would see mine being sucked right out of me from just being in the same room with my son. It's not his fault. The disease just demands so much from parents like me. The cognitive deficits such as memory decline, lack of insight, disorganized thought, difficulty with planning, a slower intellectual processing speed and language deficits to name a few, all impose an overwhelming amount of patience, repeating and re-training, sheer volumes of energy. In the last eight years, in more ways than I can count, I have literally been re-raising my son.
But the energy drain is more than that. Being in my son's presence ignites the constant urge to end his suffering and ours. To bring him back to us. I don't know what to do with this urge. It just is and always will be for me I guess. I am his mother and I can not give up or abandon him. It simply goes no where. It can only drift around inside of me, back and forth, endlessly through every cell of my being looking for a way out, or a way through. There is no outlet.
Out of neccessity I find myself in survival mode most of the time. Any attempt at recreating any semblance of the life I once led is predictably interrupted by the crisis' of the disease. All of my priorities have been re-arranged.
The positive side is that I now live a life where the lines between 'what really matters and what doesn't' have been re-drawn. It is easier to recognize now.
I haven't seen the inside of a hair salon in a year. I certainly don't look amazing for my age. But it just isn't as important as it once was. I haven't made any significant improvements to my home in years either. Interior design used to be one of my passions. It seems frivolous by comparison to me now. I have a dream, a solid plan of how to make the world a better place for millions of Americans who live with a schizophrenic loved one. But I have had to divert far too much of my energy into making a place in this world for my son. You won't find too many gourmet foods on my table being served up to a house or yard full of guests. Not any more. Most of my friends are cyber friends now.
Socialization becomes a barrier of great magnitude. His and ours. It is hard to convince someone to just go out there and make some friends when a disease has hi jacked their mind and is telling them not to trust any one. Medication is not designed to address this. But it can simmer it down because of it's efficacy on hallucinations.
Then there is the stigma that adds to the lack of socialization. I am not ashamed of my son's schizophrenia. I know it is a disease. But because of this stigma, as a family, we've been pretty much left alone. We are one of 'those' families now.
I have often said the friends and relatives who try to imagine what I am going through,or try to learn about it in order to remain a supportive force in my life are worth even more than the friends who know from an experiential standpoint what I am going through. They have to work harder at loving me and supporting me. God Bless them for doing it. Their lives are only enriched by their efforts. So is mine.
We do have a tendency to isolate. We feel disconnected from the friends and relatives whose lives have gone on the way we once believed ours would. It takes courage for us to go to that wedding, that graduation party, that baby shower. Others tend to think that we are obsessed by schizophrenia and won't let go. When in reality, nothing can be further from the truth. We don't get to let go. We'd give anything to be able to. The golden years have been re-defined for us. The roller coaster ride of Schizophrenia will always be with us until the day we die. We don't get to retire from schizophrenia. In fact, the whole issue of our eventual death is wrapped in layers of worry, fear, and sadness over what our children will have to survive without us.
Others think we are on the pity pot and stuck in our grief. Truth be told, our grief is never ending. It rises up and grabs us by the heart over and over and over due to the unrelenting course of the disease. There is no place to hide, no place to relocate, no place to run and the only safe places to fall are in the arms of someone who accepts and understands that we will always be on this emotional roller coaster ride, or in the dreams of our sleep when our nightmares subside, or our faith in God and all that is good.
The delusions can complicate matters beyond description. My son is very much like John Nash from the movie "A Beautiful Mind". He studied mathematical equations and patents for their secret codes. He read physics by compulsion and highlighted all the algaebraic equations. He collected stories about supressed inventions to prove that we as a society are prisoners of the government's control. He believed the CIA, the FBI, and the KGB were out to get him (although one would be hard pressed to prove him wrong at times).
Medication has turned this into a far less frequent closeted pursuit, almost like a hobby because it has returned enough insight to him to help him see that there is something wrong with this type of thinking. Closer to what 'normal' people experience when curiously reading or learning about aliens, fairies, or the supernatural.
But when the stress levels rise as they do in life for all of us, his breakthrough symptoms include an unintelligible lecture now and then on all of the above. It is difficult to watch. Even harder to listen to. Because it is yet another reminder of the power of this disease and the it's assault on my son's mind.
I am a solution oriented person. So is my son. Despite all appearance to the contrary because of the continous '5 steps forward three steps back' journey of the disease, we remain steadfast on the path to improvement, healing, and finding that proverbial pony in a barn full of manure.
I want the world to understand that people like my son are human. Their lives can and do have meaning. They are not dispensable. They have a disease that is just as threatening and real as cancer, diabetes, Alzheimers or Multiple sclerosis. They are living testimonials to the last frontier of unconfronted discrimination here in the United States. They are some of the most vulnerable people in the world. And their vulnerabilities are far too often mere fodder for persecution, cruelty, hatred, and media slaughter. All because of a disease they never asked for and would give anything to be cured from.
I'd give anything if the media would turn their focus on the truth regarding a parent's struggle to find treatment to prevent tragedy in a system of workers that get paid to say "I'm sorry there is nothing we can do."
People who suffer from the disease schizophrenia deserve to be given the exact same amount of care as any other person suffering from any other disease. Instead, they are segregated into a pool known as 'Mental Illness' as if they belong to some sort of separate category that doesn't require the same quality of medical attention.
We the parents (thank you very much Dr. Freud) are looked upon as the cause as if it stems from nurture rather than nature. We carry this stigma too (even though schizophrenia can be seen on an MRI or brain scan).
I never worked harder at anything in my life than being the healthy mom I had always wanted for myself. The juxtaposition between the admiration of my peers in accomplishing just that and the supposition today because of my son's disease that I failed miserably at it, is at times a contrast too hard to bear.
Despite appearances and because this disease reared it's ugly head in someone I love I am stronger. I am wiser. I am more humble. More compassionate. Less judgmental.
But, I'd trade all of this in a minute for a cure !
Today my son is stabilized and medication compliant. He is living on his own in a subsidized apartment, working part time at his dream job. It took him six years of hard work and determination to get back to the same employer he was working for when he first became sick.
He has accomplished everything he has set out to do. He is very goal oriented and he has a great sense of humor which has aided all of us in healing and finding a new normal. He feels he is now ready to resume college; a dream interrupted by his disease. I have no doubt that he will.
I am ready for this roller coaster ride as the stress of these changes introduce themselves to him and us once more. I'll be there to catch him if he needs me to.
I and his father and brother will be applauding when he receives his diploma. Few people in the audience will ever know all that it took for him to get there. But we will.
I asked his permission to tell our story and hopefully get the chance to tell it on your show. He said "I think you should do it". I asked him to take the time to think about it. He said "No.... I absolutely think you should do it!"
Then he jokingly said "And when you get done with that could ya see if you can get the extreme makeover guys to build me a house?"
Like I said........... he's goal oriented, even with his humor.
June 25, 2005
The Curch of Scientology versus a little pill
Another letter to 'The Great Undiagnosed':
I am writing in reference to Matt Lauer's interview with Tom Cruise on the Today Show.
Every reporter knows how imperative it is to give both sides of an issue equal consideration and equal exposure.
Apparently, this is not a requirement for members of Scientology.
Frankly, I don't know how Matt Lauer held it together in response to Cruise's remark "You don't know the history of psychiatry, I do."
Unfortunately, Tom's understanding of the history of psychiatry is bent and learned on a skew. In other words, he has studied it through the closed vacuum of Scientology.
Those of us in the trenches have learned about chemical imbalance from within another vacuum: the skewed bend of reality. It is manifested by experience; up close and personal. Our understanding of psychiatry matters far more than any comment by any individual who has never had to stand over a loved one watching them come apart in front of their own eyes.
I am the mother of an adult Paranoid Schizophrenic and I am appalled at the wholly irresponsible fashion with which Cruise has diminished the miraculous outcome of millions of Americans who thank God every day there is a little pill that can guard their loved one against suicide, homelessness, unspeakable fear and mental torture. It is unquestionably, a tortured existence the rest of the 'Worried well' can only imagine.
The following link has a video clip with a simulated version of what this disease can do to a once normal, healthy, mind:
Furthermore, as a celebrity, Tom Cruise has created enormous damage by denouncing the medical breakthroughs that have ressurected the lives of so many people like my son.
His remarks to an international audience have fed into the 'Lack of Insight' that millions of people suffer from as a symptom of mental illness. The following link on the lack of insight explains precisely why his comments are so dangerous:
My son has a disease in his brain. He did nothing to deserve it. I, his mother could not have prevented it any more than I could have prevented a brain tumor.
But I do have to live with it for the rest of my life and so does my son. Medication is the only tool we have to bring any order back from the chaos this disease creates, or to lessen the suffering it inflicts on millions of people and their families.
I am especially grateful toward and would like to thank ABC News for their attempt to balance the playing field with the following two articles:
ABC's Reality Distortions: Balancing the Mind in Schizophrenia
ABC's Caring for a Loved One With Schizophrenia
But it isn't enough. This snowball is rolling down the hill and millions of people are counting on you to stop it.
I suggest it is MSNBC's professional responsibility to provide wide coverage on the disease of Schizophrenia and the truth about the miracles of modern medicine in it's attempt to treat this horrific disease. Specifically, how far we have come and the many miles of road that stretch out before us we still need to journey through. Most importantly, that there is help out there and it is found in a pill.
Almost anything you could possibly need to know or reference to do this can be found at:
Let's see if we can undo some of the damage.
Just another Mother who relies on a pill to keep her son alive.
cc: ABCNEWS.com EDITORIALAL
ATT: Matt Lauer
October 05, 2004
A Mother's Prayer For Mental Illness
Dear average American Citizen,
As the mother of a son with Paranoid Schizophrenia I have been struggling with the issue of prayer for quite some time. It is not that I have lost faith. I have been running on it for five years now. Granted there were times when it was reduced to the size of a mustard seed. But as I look back in hindsight, there was a moment that stands out from all the rest that left me totally and completely drained and frozen in fear like a deer in the headlights of an oncoming car when it came to the issue of prayer.
In my desperation to heal my son, to find an answer that would bring the child I had given birth to back to us I prayed fervishly for two solid years. I fully and whole heartedly believe in the almighty abilities of a power greater than myself. But one day, in one all encompassing moment I remembered that sometimes the answer is no. I stopped praying on that day. I turned my life and my son's life and his disease completely over to the care of God, rolled up my sleeves and began to dig in to the enormous footwork involved in getting my son stabilized, working again and independent. There was no time for prayer. I had work to do.
My son is doing really well, in spite of all the naysaying. He is working. He lives on his own with supportive services, which in today's terms means mom and dad. He is stable. Brittle, but stable.
I have found myself confronted with the issue of prayer again. I have come to realize, when I began this journey of a thousand miles, having never been confronted with this disease before in my life, a great deal of my struggle came from not knowing what to pray for. My relationship with a power greater than myself had become stagnant. Much like the Freudian/patient relationship does in assuming the patient has all the answers, when in reality the patient doesn't even know what the questions are In spite of searching, there was no one that suddenly appeared to lead the way. I had to become the pioneer into the unknown land of schizophrenia for my son, for my family, for me.
Today, in honor of the National Day of Prayer for Mental Illness, I want to share a prayer I have written for all the parents who find themselves in this same dilemma. I want to be able to give them the prayer I never had. The one that got answered any way on the faith of a mustard seed. The one I would have prayed had it been available to me. It would have saved me an enormous amount of pain and suffering on top of everything else I was already dealing with. For too often, my greatest fear was I had not only lost my son, but also I had lost my relationship with God.
A Mother's Prayer for Mental Illness
As I stumble from my bed this morning, help me to remember to be gentle and kind.
My child's mind is shredding into a million pieces. He lives in a constant state of atrocious fear. I can see it in his eyes. Give him peace.
Guide me as I hold him in my arms. Help me to know what to say. What to do. Fill my heart with healing love, understanding, and empathy.
Give me the strength of a thousand angels to hold back my tears. My heart is broken and a tidal wave of grief is overwhelming me with the need to cry. Give me the strength to bear it long enough to keep it from disturbing my child. Help me find someone I can safely bring it to.
Help me answer my family's questions with the same amount of compassion I would want for my self. Help me remember they are hurting too. This is an unwelcomed assault on an entire family. My heart is not the only heart that is broken. We all need time and each other to heal.
As my journey becomes more and more isolative and lonely, remind me that the lack of involvement on the part of family and friends is not always because of the stigma and the ignorance. For many, it is because they are hurting too. They have the privelege of turning to their own lives. This is my family's life now. I must deal with it whether I am hurting or not.
Send me your best physicians and healers. Give me presence of mind, as I walk through the exhaustion of my grief to not settle for just any one no matter how tiresome the journey becomes.
Help me adjust to the idea, that although it appears my son is gone, there will be no goodbye. And that he is still inside somewhere waiting for us to find him.
Infuse the creative part of my mind with solution oriented thinking. Give me hope. Even if it is just a glimmer of hope. A mother can go for miles on just one tiny glimmer. Let me see just a flicker of the sparkle of joy in his eyes.
Guide my hands, calm my mind, as I fill out the multitude of forms for services. Then help me do it again over and over.
Provide me with the knowledge. Lead me to the books I need to read, the organizations I need to connect with. As you work though the people in my life, help me to recognize those that are here to help. Help me trust the right ones. Shine a light upon the right path.
Give me the courage to speak my truth; to know my son's truth. And to speak for him when he is unable to do it for himself. Show me when to do for him what he is not capable of doing for himself. Help me to recognize the difference.
Help me to stand tall in the face of the stigma; to battle the discrimination with the mighty sword of a spiritual warrior. And to deflect the sting of blame and faultfinding from the ignorant and the cruel.
Preserve my love for my family. Shield my marriage with the wisdom of the love that brought us together.
Protect him from homelessness, loneliness, victimization, poverty, hunger, hopelessness, relapse, drugs, alcohol, suicide, cruelty and obscurity.
Lead us to the miracles of better medications, better funding, better services, safe and plentiful housing, meaningful employment, communities who care, enlightenment. Help us to find some way to replace all the greed with humanitarian work and intrinsic reward again.
Most of all, give me the strength to deliver whatever I can to the work of unmasking the man made ugliness of this disease and revealing the human and all of it's suffering beneath.
Finally, when it is my time to leave my son behind, send a thousand angels to take my place.
August 29, 2004
Surviving the Five Fears
Dear Average American Citizen,
As a parent of a son with a neurobiological disease, specifically Paranoid Schizophrenia, I live with my own set of fears. Granted my fears pale in comparison to the level of fear that conjures the clinical state of paranoia. I try to imagine what it is like for my son, but the best I can liken it to from an experiential standpoint is living in a constant state of fight or flight. I usually prefer to add feign to the fight or flight theory because I find that many of us, if given the right set of circumstances will turn to feigning whatever is necessary to survive a life threatening situation as well.
Today I am referring to five earth shaking fears that all parents of the pervasively mentally ill live with every day. How we manage to suppress these all too real possible outcomes well enough to manage the daily makings of our lives is beyond me. But we do somehow. It is just another testament to the will of the human spirit if you ask me.
Staying in today helps. But there are always moments when our focus gets sidetracked. There are also events that can occur that have the power to ressurect each and every fear into a direct line toward the images of our worst nightmares, stringing together one imediate thought after another. Shaking and waking us up to our reality like lightening. Hearing about the tragedies of other parent's children is certainly one of them.
We live every day, at least on some level, no matter how focused we are, in fear of what will happen to our loved ones.
The hardest moments are when we allow ourselves to think about what life will be like for them when we are gone.
Today I am thinking of suicide. The possibilities of it. I can't help it. Another member of schizophrenia.com has lost her precious son to suicide. It's all right here in my lap and it won't go away. We've lost three to suicide in the last year.
I am a suicide survivor. So this fear for me is also founded in actual experience. I know it really does happen. I don't get to deny. I know what it feels like to be left here without the person I love. What it feels like to constantly ask the question 'What if?'. I know all the self doubt, the self blame, the impossible search for comfort and the memorized version of what I have had to tell myself to just get myself off the hook for one day. Some days it was hard to do for just one hour. Placing the blame on others ate up more days than I can bear to remember. I've survived the logical versus the emotional inner battle. A battle I have never completely won in 31 years. I have survived it. That is all. Logically, I know it is not my fault. Emotionally, the answer to 'What if?' will never come. Ultimately, you learn to live with the big fat question mark and the incredible yearning for just one more chance. Forgiveness is the only answer. Forgiveness for myself if I did contribute in some way, forgiveness for others who contributed, forgiveness for my loved one who didn't stop the train of thoughts that led to his demise.
Suicidal ideation is a built in situational response for the psychiatrically disabled. The desire stems from the realization and awareness of the limitations these types of disabilities and their remedies (or lack thereof) have placed on their future. The loss of dreams, plans, and whatever they consider to be normal can create such a loss of hope that there seems no where else to turn. The most critical period for any parent to be on the look out is when their son or daughter is gaining stabilization and insight into their disease.
I have no doubt the stigma of this illness contributes enormously to the desire to end ones life. None. Especially in the case of schizophrenia.
But there is another risk for suicide that we all live with. The voices. Their commands. The auditory hallucinations alone have been responsible for the loss of too many of our children. This scenario induces probably the worst sense of powerlessness any of us might ever come to know. This train of thought is not in their control when they are psychotic.
The idea that a disease can hi-jack our children's minds and force them to do things they would ordinarily never even consider is infuriating. Senseless. Devastating. It haunches it's hind legs and gnarls at us.
I could get preachy here about med compliance, hypervigilant watches, symptom management, suicide prevention tactics, and really pour it on thick. But I'm not going to.
Most of the time, we hear about the successes. Going back to work, going back to school, stabilization and recovery.
But I just can't help but wonder how many more have to die before we come up with medications with more tolerable side effects and more effective control of break through symptoms? Before we come up with better treatment and better services for some of the most vulnerable of God's children in the world?
So today, the perrennial presence of that axe waiting to be hurled into my back,
isn't so easy to suppress.
My son just stopped by to drop off some things. I gave him a big hug. I told him how much I loved him and how much I missed him. That I was looking forward to our day together tomorrow. I held on to that hug a little longer than usual. I breathed him in a little deeper when I kissed his cheek. I don't know what this damned disease has in store for me any more than any other parent does. I only know one thing. It could just as easily have been my son.
August 04, 2004
On Why We Need a Blanket of Awareness on Mental Illness
Dear average American Citizen:
Every one's child is at risk:
"Statement of Carol Carothers of Augusta, Maine on Behalf of NAMI (The National Alliance for the Mentally Ill) Before the Governmental Affairs Committee, United States Senate on Juvenile Detention Centers: Are They Warehousing Children with Mental Illnesses?
July 7, 2004
Chairwoman Collins, Senator Lieberman, and members of the Governmental Affairs Committee, I am Carol Carothers, the Executive Director of NAMI Maine, the Maine state chapter of NAMI -- the National Alliance for the Mentally Ill.
I am also the proud recipient of a 2004 Robert Wood Johnson Community Health Leadership Award for my work to improve conditions for Maine�s inmates living with mental illness and co-occurring substance use disorders.
First, I would like to thank you for providing me with this opportunity to testify today about an issue that is of great concern to me and families across the state of Maine � the warehousing of children with mental illnesses in youth detention facilities.
I have reviewed the report released today titled The Incarceration of Mentally Ill Youth Waiting for Community Mental Health Services in the United States -- and can share with you first hand from my experience working in jails and prisons and contacts with youth living with mental illnesses and their families that the findings are accurate. The sad truth in Maine and nearly every other state in our country is that youth with mental illnesses are being held in juvenile detention for the sole purpose of awaiting mental health treatment and services. It is hard to imagine a worse place to house a child that requires healthcare treatment and services for their mental illness. Surely we would not dream of placing a child with another serious illness, like cancer for example, in a juvenile detention center to await a hospital bed or community based treatment. It is outrageous that we do this to children with mental illnesses, as young as 7 years old. This takes an enormous toll on the child and the family.
Rather than only share family stories on this crisis, I would ask you to read a copy of The Portland Press Herald�s three part series titled Castaway Children (August 2002). I have provided copies of this series for the committee and the record. This series tells the compelling stories of how the lack of adequate mental health services in Maine has dramatically impacted many children and families, often with tragic consequences. The media has reported on similar stories in many other states � and the report released today on incarcerating children with mental illnesses makes clear that the lack of adequate and appropriate mental health services for youth and families is a national crisis.
Children and Families Are Suffering Unthinkable Consequences from This Crisis
My first involvement with mental health and the criminal justice system came in response to the death of an 18 year-old youth with co-occurring mental health and substance use disorders. This young man had fallen though the cracks for years � no one had intervened or properly diagnosed or treated his mental illness or his substance use disorder. Ultimately, he hung himself in Maine�s most restrictive prison -- the super-max. The incredible tragedy is that he fits right within the confines of this report � he was in the super-max only because he was suicidal and no hospital bed could be found for him and not because of any offense that he had committed. What an unfortunate loss of a young life, particularly when today we have made great scientific strides in understanding how to properly diagnose and treat mental illnesses in youth and adults.
There have been plenty of other cases with unthinkable outcomes. Recently, Maine settled a lawsuit on behalf of a child committed to the youth center at the age of 13. At that time, he was suffering from depression and suicidal ideation. He was held in isolation for 152 of his first 240 days. Because of the severity of his illness and the lack of proper treatment, this child was committed to a youth center five times and each time this pattern of isolation continued. As one would expect, this child�s behavior deteriorated and his symptoms of depression, aggression, and eventually self-mutilation, increased. This led to more periods of isolation as punishment for his poor behavior � he was spiraling deeper and deeper into his illness. A juvenile justice center was hardly an appropriate environment for a child suffering from a serious mental illness.
I spoke to a mother last week, who began her quest for help for her son with mental illness when he was in junior high school. The school system responded to his bipolar illness by insisting that there was nothing wrong with him, refusing to provide special education services, and expelling him when he failed to follow school rules. His mother nearly lost her job because she was frequently absent from work to care for him, and her other children begged her to kick him out of the house. At age 12 when he first entered the juvenile justice system, the courts responded by incarcerating him because they also were not trained to recognize his mental illness nor did they understand the research showing that their approach would make him worse, not better. And the youth center where he was locked up contributed to his down-ward spiral by placing him with older juveniles who taught him advanced criminal behaviors. She said, if I could ask for anything I would ask them � what money did you save by denying my son mental health treatment and services? He could have had a good school experience and would have been thriving now. Instead, the family suffered, he suffered, and I bet it cost significantly more money to treat him in this inhumane manner.
One of the moms in our support group has a 13 year old son who was in a residential school program and doing well. However, she moved north, and her son was supposed to transfer to another program closer to her. The plans to link him to new services fell apart, and he ended up with nothing -- no psychiatrist, no case worker, no medications, and no therapist. As one would expect, he fell apart and landed in juvenile detention, where he still is, weeks later. And, what's different since he landed there � he NOW cuts himself and has learned negative behaviors that are likely to make his reintegration into the community more difficult � another compelling example of why it is such an inappropriate environment for kids with mental illnesses.
Many moms inform me that they have been told to either give up custody of their child with a mental illness to obtain services or the state will come and take their healthy children away and put them in foster care because of the behaviors of the ill child and the potential for harm caused by the symptoms of that illness. These are parents who love all of their children and have depleted their resources to try to get mental health services � what kind of a choice is that for a parent who loves their child and is desperate to secure services?
Juvenile Detention Centers Are the Worst Possible Environment for Children with Mental Illnesses
In criminal justice facilities the symptoms of mental illnesses are often misinterpreted by inadequately trained staff as disobedience, defiance or even threats. I have seen this first hand. Often well meaning, but untrained corrections� staff, respond to these behaviors with anger, discipline or even force. When staff are allowed to resort too quickly to threats and force in the face of non-compliant adolescent behavior, minor incidents escalate and the risk of harm increases for both the child and the officer. Many of the techniques used in correctional settings -- like prolonged isolation and restraint -- actually lead to increased, not decreased acting out and self-harm, particularly among youth with mental illnesses.
It is wrong to place children with mental illnesses that require treatment into juvenile detention centers where the symptoms of their illnesses significantly worsen and their long-term outcomes become much bleaker. These are environments almost guaranteed to exacerbate their mental illnesses. Children with mental illnesses belong in therapeutic treatment centers. Imagine the message that we are sending to these children when we house them in juvenile detention while they await treatment for their mental illness � it has a dramatic detrimental effect on these children.
Additionally, when a child is housed in a juvenile detention facility, parents experience a complete loss of involvement in their child�s life. The philosophy of many detention centers is to limit contact of youth confined to the facility with their families. Families lack the opportunity to stay closely connected to their child at a time when the child is vulnerable and most in need of their love and support.
Juvenile detention centers have limited resources and serve complex populations. When children are detained in juvenile centers in Maine, they are housed in a single unit where 10 year olds can be housed with 20 year olds. This makes educating the child and providing for their individual needs extremely difficult. It also creates vulnerability of these younger children to physical and sexual assaults and victimization. Staff frequently spend most of their time protecting vulnerable kids from predatory kids, especially when the unit houses far more youth than they are built to house.
Finally, if youth housed in the center have undiagnosed mental disorders, which many do, then the correctional setting is slow to respond, complicating matters and leading to a deterioration in mental status, increased violations of rules, and increased discipline. The unfortunate reality is that the more experiences that youth with mental illnesses have in juvenile detention centers, the more likely it is that they will descend deeper and deeper into the criminal justice system. The initial placement in juvenile detention becomes a self-fulfilling prophecy.
Maine, Like Most States, Lacks Adequate Home and Community Based Services
Maine, like many other states, lacks anything close to adequate home and community-based mental health services for youth with mental illnesses. This is the case despite the fact that home and community based services cost considerably less than institutional care and keeps children at home or close to home and loved ones. Research shows that serving kids in the community and close to home � whenever possible -- leads to more stable lives and better outcomes and often saves the state money over institutional care. It costs fifty to eighty thousand dollars a year to lock a child up in a detention facility and about $30,000 to provide intensive in-home services for a family for one year.
Families are forced to beg for crisis services or are placed on long waiting lists for services. Families report being told that they must wait as long as one year or more for services. This has led to the unnecessary warehousing of children in juvenile detention centers. The urgency of this crisis cannot be overstated. There is anecdotal and research-based evidence that too many of the youth housed in juvenile detention centers graduate to the adult correctional system. The United States is now the country with the largest number of incarcerated citizens in the world. Four new prisons open every month to house the growing number of individuals that are convicted of crimes.
We are spending money in all of the wrong places. We need to appropriate funds to build home and community based mental health treatment and services for children with mental disorders. This will both benefit society as a whole and lessen burdens on the juvenile justice system.
The failure to adopt new policies and to consider what works will mean that growing numbers of states will spend more on their correctional systems than they do on their treatment or education systems. We must not become a nation that spends more to incarcerate children than we spend on their education or in providing them with treatment for their serious illnesses.
Unfortunately, in Maine, like most other states across the country -- mental health and substance abuse services are being substantially reduced, rationed, and eliminated as states struggle to balance their budgets. What this will surely mean is that more children and adults with mental illnesses will be locked up in correctional facilities because they cannot access the treatment that they desperately need. The money cut from mental health and substance abuse services will not be saved, instead it will be shifted to the juvenile and corrections� budgets, a waste of taxpayer money and an inhumane way to treat children and adults with mental illnesses.
What Can Be Done to Help End This Crisis?
Congress can take several steps to address this public health crisis.
First, Congress should enact the Keeping Families Together Act (S. 1704/H.R. 3243) � which is designed to help end the tragedy of forcing families to give up custody of their child to the state to access mental health services. This bill would provide grants to eligible states to develop a more comprehensive array of home and community based services. It also calls for better coordination between child serving agencies � this is desperately needed. Families report that child-serving agencies � like education, child welfare, juvenile justice and mental health � rarely coordinate services, often work at odds and overall fail to work together to help children with mental illnesses and their families. This bill would help end the warehousing of children in juvenile detention centers while they wait for mental health services.
Second, Congress should also enact additional federal legislation to help improve access to essential community based services for youth with mental illnesses and their families. This should include increased funding for the full array of mental health services needed by these youth.
Third, NAMI supports the immediate enactment of The Mentally Ill Offender Treatment and Crime Reduction Act (S. 1194/H.R. 2387). This bill would authorize funding for grants to states and communities to be used in a variety of ways to address the high percentage of youth and adults with mental illnesses locked up in jails and prisons. These include jail diversion programs, community reentry programs, and enhanced treatment for youth and adults with serious mental illnesses who come into contact with criminal justice systems.
Fourth, Congress should enact The Senator Paul Wellstone Mental Health Equitable Treatment Act -- the mental health parity legislation (S. 486/H.R. 953). There are discriminatory caps on nearly all private health insurance plans for mental health benefits. Families are often left with no where to turn when they exhaust these benefits. Families are frequently caught in a "catch 22" situation. They fail to qualify for Medicaid under the strict income limits yet even when they have private insurance coverage, their plan provides for inadequate mental health benefits.
Finally, NAMI supports the Family Opportunity Act (S. 622/H.R. 1811) � which would allow families with children with serious disabilities to buy into the Medicaid program � on a sliding cost sharing basis to provide insurance coverage for essential services.
These important legislative initiatives will help to address the crisis described so vividly in the report released today.
In closing, I would like to thank Senator Collins and Representative Henry Waxman for their leadership in presenting this report on incarcerating children with mental illnesses in juvenile detention while they await treatment.
I would also like to share with the committee that in preparing my remarks for this hearing, I spoke with families, inmates, and advocates and asked them -- what is the most important thing that I should say? The answer that they all agreed on -- make sure they understand the urgency of this issue. This is truly one of the major crises facing America today.
Children represent a fraction of the population in our country, but are 100% of our future. Ending this inhumane crisis will require immediate action at every level of government � federal, state and local. Thank you again for this important opportunity to share my concerns. NAMI looks forward to working with you on this and related issues."
Send a blanket Sept. 1st
Blanket Awareness for Mental Illness
Dear Average American Citizen:
I've been a little busy.
It started like this when one mom wrote:
"Aids made a quilt. MADD sent a shoe to represent victims. The homeless coalition sent a penny for each homeless person.
Any thoughts on something that we could collect or assemble? A quilt was the prefect idea. Everyone sent a square
I thought of sending horse patties for all the crap we get. No! Seriously,
I wish I knew how to make a rug. We could assemble it with a piece of twine or rope, representing each individual.
PS has anyone heard an update on the STAMP
Toss the idea around. I am busy with other things right now.
I will check the national sites for Mental Illness and see if anyone is or has done anything.
This was actually my sister's idea, to make something for visual representation. This would be good for National Schizophrenia Awareness next year."
Then another mom wrote:
"I have an idea as to what we could send.
Whenever I think of all the psychiatrically disabled people of America collectively, I always think of blankets. It's a thing with me. A comfort thing.
Whenever I feel down, abandoned, or powerless, I find my self gravitating toward the linen department and looking at blankets.
It has become a symbol of care for me. Even self care. I think of the homeless and I think of blankets. In the winter, I think of electric blankets and outdoor outlets on buildings. I think of the poverty and shut off notices and I think of blankets. I think of the horrific hallucinations, which to me are nightmares with one's eyes open and again I think of blankets.
There's just something about a mother's love and tucking her kids in at night beneath their blankets that really gets to me. Like that one rendering from Norman Rockwell's Four Freedom's, "Freedom from Fear". The one where the mom and dad are tucking their kids in bed during war time. It's a universal message.
Any way, if we all just purchased one blanket and mailed it to our senators or congressmen, we'd definitely get their attention.
They come in those convenient, zippered, see through plastic covers. We could easily slip a sign inside that said "It's time to cover mental illness equally and adequately".
We could even purchase baby blankets and put a picture of our kids when they were an infant under the plastic too.
I have this image of some senator, sitting in his capitol office, with hardly no room to move, with stacks of blankets all around.
I have this vision of massive mailings of blankets to Washington. "
It grew into this:
cover my son - cover my daughter - cover my sister - cover my brother -cover my mother - cover my father - cover my husband - cover my wife - cover my grandson - cover my granddaughter - cover my grandpa - cover my grandma - cover my uncle - cover my aunt - cover my neice - cover my nephew - cover my cousin - cover my stepson - cover my stepdaughter - cover my stepfather - cover my stepmother - cover my daughter 'n law - cover my son 'n law- cover my friend - cover my neighbor - cover me
Americans are urged to mail a blanket to their Senators on September 1st, 2004.
IT IS TIME TO COVER MENTAL ILLNESS EQUALLY AND ADEQUATELY
Why a blanket? It's a universal message, it is a symbol of comfort, security and care.
Where to mail them: To locate the Washington address of your State Senator visit http://www.senate.gov/
What to mail: A blanket of any size with a note that reads:
"It is time to cover mental illness equally and adequately".
Blankets can be purchased in convenient, zippered, see through plastic covers.
Some individuals may wish to include a picture of their loved-one
with mental illness.
You could even purchase baby blankets and put a picture of your child
when they were an infant or toddler inside.
Others may want to send a blanket and note to show their support.
Literally, anyone can participate.
The U.S. Post Office offers a variety of different sized boxes and packaging materials.
To Learn More About Mental Illness,
or if you experience a problem locating your Senator:
Let's get them covered!
Send a blanket September 1st !
Please mail a blanket and note to show your support and to bring awareness to Mental Illness in our country.
Hug My Kids neither endorses nor opposes any political party, or any cause other than supporting the sufferers of mental illness, individuals with disabilities and their families.
Please feel free to forward, cut, copy, and paste, make hard copies and distribute, post this at websites, and remember your loved ones with a mental illness.
June 17, 2004
Dear Average American Citizen,
Well, the cards of grief have been shuffled. Which one is it today? Denial? Anger? Bargaining? Depression? Acceptance?
Today I'm angry.
Today it is about my losses. Not my son's. Funny how this part of the process always seems to run into more barriers than any other.
One, because few people like being around an angry person. Least of all myself. But, wherever I go, there I am!
Two, because I'm a woman and we are not supposed to get too up close and personal with this emotion. Especially not the arm of anger that elicits motivation and power, rather than just liquid anger and tantrums.
Three, because it just plain feels awful to be angry. It's hard to be happy when your pissed.
And four, because it's the last great act of defiance prior to acceptance.
What am I angry about?
The two by four that hit me upside the head and sent me reeling in the first place.
The ignorant audacity of others who still expect me to function as if my life is still as it once was.
The plans I had for myself that seem to shrivel up into all the 'not nows' and 'laters' and 'maybe somedays'.
My own personal inadequacies of never measuring up to all those people who seem to be able to accomplish so much more than I in spite of even more drastic difficulties than I am dealing with.
Truth be told, I'm running on full speed ahead, with full barrels flaming. When is enough......... enough for me?
I try to remember what it is like to spend my time interacting with others, and not have to sort through their delusional beliefs to find the hidden reality. I miss flowing conversations and effortless connectedness.
Then there is the beloved task of sorting through the twisted language, both verbal and written, of government agencies assigned the matter of 'helping' the disabled and balancing the budget at the same time. Oh! What FUN!!!! Not exactly what I had planned spending my golden years on.
Frustrated? I'm beyond frustrated! I'm fed up and want to run away and live on an island; a very small isand!!!!
It's the continual onslaught of crap on top of crap that is gripping me by the ovaries and hurling me into this thing we call anger!!!
There was a time when the advice of others, when taken and applied led to a reprieve, an awareness or a solution. An experimentation in what will work and what won't emerged. Now, I just feel stuck! It's been a long time since any one's suggestions actually made a difference. Cuz, already been there, did that. Used to work. Not working now.
I can't even follow my therapists advice in putting myself first without running into yet another totally bizarre calamity.
On the advice of my therapist, I went to get my hair done. The hair dresser actually yelled at me. The woman sitting next to me said "I felt so sorry for you!" Now what a wonderful excursion that turned out to be in pampering myself!
Tried to take a trip up north with hubby. A time out, again on the advice of my therapist! Our hot water heater up there died. We spent two days of the four day trip getting it back up and running. One day taking care of a tenant problem. One day trying to calm down. What a time out it was!
Had an overnight trip planned with two friends to go to Shipshewana, Indiana and see the Amish village there. One friend had to have last minute emergency surgery. Meanwhile, the other friend who has a mentally ill son was dealing with her own crisis. A freak thunderstorm rolled through, lasting only several minutes, and toppled a tree onto his bran new parked car, totaling it! Me? I was at the mall, actually buying something to wear for the trip. I heard nothing. I drove home through the tree carnage, and darkened traffic lights, to find I wouldn't be going after all. Instead we would be holding the DTE candle light vigil, and getting through the night without power.
And yes, at least I can afford a therapist, and at least I can get my hair done, and at least we have a place to get away to, and at least no one was in the car when the tree fell, and at least we had candles to light when we had no power and ................................... but COME ON! Even the queen of denial can see the utter ridiculousness of my efforts here!
I'm just trying to do something nice for myself!
I have an appointment with my therapist tonight.
If she gives me another assignment to do something nice for myself, I'm going to tell her to shut up!
May 27, 2004
Dear Average American Citizen,
Please forgive my absence from this blog. I have been dealing with issues too numerous to mention. One calamity after another. I have a quiet moment and am determined to spend it here. I am counting on June to be a more productive month as far as my entries go.
The last month of my life has been productive in other equally valuable ways. I have gained much insight into my own position in the great big cosmic joke of life. It seems as though, my endless efforts to defend myself, have reached a level of understanding that has brought me such an enormous 'AHA', it bears sharing.
I have come to realize I've been defending myself against the paranoic suspicions of others all my life. Granted, it appeared for the most part as mere misunderstanding, or a failure to communicate effectively on my part. I've spent most of my life wondering what it is I've done or said to illicit such far fetched and unfounded suspicion by others. I look back in hindsight now and realize that virtually all of the figures in my life who have played a significant role had the misfortune of being paranoid to some degree, whether it was due to brain chemical, alcohol, or street drugs.
I'm not referring to the occasional dip into the state of paranoia that we are all privy to. I'm also not referring to a set of circumstances that creates the opportunity for rational suspicion. I'm referring to the strange and bizzarre accusations that could only eminate from the irrational source entrenched in a clinical state of paranoia. The kind of stuff, that makes your eyes squint, your nose wrinkle, you upper lip purse with that familiar question "Whaaaaaaat?"
I now realize, I have been conditioned to not only attract this type of chaos into my life, but also, to see myself as the reality check for this type of irrational thought. I have paid quite a price for this magnet and I am exhausted. It doesn't take much to knock the wind out of my sails these days.
I've decided I'm not defending myself any more. It is worthless to try to do so any way. Defending myself, or trying to get a paranoid person to see that I am not really up to something, only serves to display ownership of the accusation in their eyes. It only escalates the conflict and fuels the false belief. I'm simply not taking it in any more. My goal from now on when confronted with a false belief about me, is to simply say "It sounds like you really believe that about me."
But I digress. My purpose in this blog is to present a rather mind blowing concept to 'The Great Undiagnosed'. It is by far one of the most twisted and shocking revelations of my journey with a schizophrenic son. It is a simple concept really. But when faced with it, I was simply waylaid.
As a parent we are inundated with radio and television Public Service Announcements regarding the signs of drug and alcohol use and abuse in our children. I was hypervigilant in this regard. I was convinced, I would recognize it in my children and be able to intervene early. I was also painfully aware that my efforts to do so held no guarantee. But I remained determined to give it my best shot if neccessary.
Now here's the clincher:
Schizophrenia looks like drugs and alcohol.
Let me say this again.
SCHIZOPHRENIA LOOKS LIKE DRUGS AND ALCOHOL!
I spent the first month of my son's first psychotic break, searching his room, his car, the garbage cans, looking for proof.
If you find yourself doing the same thing with your child at some given point during their turbulent teens, please remember, irregardless of whether you find proof of drugs and alcohol or not, you may still be looking at schizophrenia. Even if you find an empty bottle of beer in the bottom of the garbage can outside, this does not rule out a mental illness! Get your son or daughter to a doctor. Early diagnosis is key to recovery for both addiction and mental illness.
The following list consists of excerpts from the signs of drug and alcohol use in your children. I have included only the signs that are also indicators of schizophrenia.
� Sudden changes in mood or attitude
� Withdrawing or isolating from family
� Paranoia, irritability, anxiety
� Abrupt decline in attendance or performance at school or work
� Resistance to discipline at home or school
� Unusual or disproportionate displays of temper
� Loss of interest in hobbies, activities, and/or sports
� Change in eating or sleeping habits
� Abandonment of long-time friends
� Heightened secrecy about actions or possessions
� Sexual Promiscuity
� Trouble getting up in the morning
� Dilated pupils, glassy eyes
� Appearing �spaced out�
� Excessive or inappropriate laughter
� Hyper, nervous physical energy
� Nonsensical speech
The way out is the way through. There is no way around.
April 27, 2004
It's Not My Fault
Dear Average American Citizen,
In telling you and informing you that schizophrenia is a disease, I ask you to use this knowledge somehow to stop the stigma. I ask you to stop blaming not only the sufferer, but the parent too. The last statistic I read regarding the general public's view on the cause of schizophrenia stated that up to 70% still believe it is the result of faulty parenting. Our children are not the only ones who suffer from the stigma, the myths, and the ignorance. Thank you very much Dr. Freud.
Although few could argue that no one suffers more than they do from the discrimination that stems from stigma, believe me I suffer too.
As a parent, whose child has become sick, the first question is always 'why?'. It is impossible not to ask. There are those who outwardly shame us for even asking that question by querying us with "How will knowing the answer to that question help? Let it go!" But I believe that inwardly, my 'why' is ressurrecting something they simply can not cope with. I see comments like this as just another form of denial. A request so to speak. Such as, "Please don't ask me to go there with you!" After all, it is a most insufferable place to be when there are no concrete answers. And we need an answer.
Often, we are confronted by well meaning friends and supporters who remind us "It is a disease. It's not your fault."
We hear the comforting words "Stop blaming yourself. You didn't cause this."
And it helps. For a while any way.
We read books, search the web, contact researchers, question doctors, they all say the same thing. "It's a disease. Please stop blaming your self. It's not your fault!" I once had a doctor say this to me. But in that precise moment, it was finally clear to me he had no idea what he was actually saying. I had heard it so many times before, only to end up with the same doubts again. And I was so tired of the bandaid it offered to the wound that kept opening back up. The one that would not heal. The one that needed surgery.
My response? "Do you really think logic and reasoning can ever once and for all, completely stop a parent from blaming themselves for a disease that can not be explained yet?"
We know it in our heads. It's our hearts we're having trouble with. If we could point to a specific virus, a specific bacteria, a specific physical trauma and know for certain this is what caused schizophrenia to rear it's ugly head in the brains of our sons or daughters, it would be painlessly easy to stop blaming ourselves. Absolutely and positively painless.
If I hadn't spent the first 40 years of my life, saturated with Freudian conditioning, perhaps I could completely "let go". Perhaps I could heal that wound. End this arm of my suffering. But it is far more difficult to unlearn the old than it is to learn the new.
But in my quiet, desperate hours, when I am alone with my own thoughts, my mind instinctively wanders back through his life searching for the moment that made this happen. Searching for a cause for this effect.
I think about the playground......... when he was 8........the fall........ the concussion. I wonder about the auto accident......... the stitches in his head. I think about the cruelty of peers, his father's workaholism, my paying too much attention to his brother's dyslexia, the complications of his delivery, the numerous viruses, his best friend dying of cancer when he was only 7 yr.s old, the english teacher who seemed to despise him for no real reason at all........... and on and on and on.
Somehow, I find a way to stop. I get busy. I remind myself it is a disease. It's not my fault. Apply my own bandaid. Or ask God, 'Please! I just want to know 'why' before I die."
Sometimes, I just can't help but cry some more.
I want to be able to find it. I yearn to be able to know. And when I do, I want to be able to scream from the top of my lungs, don't let this happen, or that happen to your child ............. to my grandchild......... to my great grandchild. I want what all parents of schizophrenics want; to be able to prevent this disease. It is where the urgent need to ask why comes from. We just want to understand this nightmare. Because if we can prevent it, we can also cure it!
So, please the next time you hear someone blaming a parent for causing this disease to manifest in their child, take a moment and remind them "It's a disease. It's not their fault. Besides, despite knowing this themselves, they are already blaming themselves more than you could ever know. They are parents. That's just where they go!'
April 15, 2004
Scrubbing Shadows Off The Wall
Dear Average American Citizen,
I found myself vigorously scrubbing marks off the wall the other day, only to discover quite to my surprise, they were actually shadows from a vase of flowers caught in the sunlight at just the right angle, in just the right moment of the afternoon, to mimic finger prints.
It made me think of my son. My illusion or perceived reality and the wonderful outcome of it's complete dissipation through logic and insight, left me amazed and rather amused at the trickery of light and optical illusion. My son does not get to appreciate even something as small and insignificant as enjoying a moment like this. Because first, he would have to question if it was back. Are the hallucinations back?
I had a phone call a few months ago. The interference on the line quickly evolved into two audible voices. Just like an old party line. Except for one thing. I could hear them, but they could not hear me. Switching channels didn't help. So I tried to carry on my conversation in spite of it. I couldn't concentrate on what I was saying. I couldn't hear or comprehend what my friend was saying. I couldn't make it stop. So, I decided to hang up. Immediately upon placing my phone in the cradle, it dawned on me. My son never gets to hang up.
Freedom. Prescious freedom. My son has lost his freedom over so many things. Schizophrenia is his stalker, his jailer, his judge and jury, his sentence to poverty, loneliness and disconnectedness. There is no respite, no vacation, no soft place to fall, no choice to hang up.
There is medication. Medication the rest of us (The Great Undiagnosed) would never consider taking unless it was a matter of life or death. Make no mistake about it! It is a matter of life and death for them. So they take it, if they will. We encourage them to take it . Even beg them to take it. Anything to remove the horrible fear of impending suicide that hovers over them and us if they don't. Anything that will bring them even slightly back to themselves and to us.
Medication offers no cure for schizophrenia. No guarantee that the voices will subside, or be silenced, nor any of the hallucinations whether auditory, visual, olfactory, taste or tactile. They do however guarantee exhaustion and a myriad of seemingly unbearable and aggravating, bizarre side effects too numerous to mention. With time, with a great deal of time, most improve. Now there's a relative term. Improve. It took two years before my son could manage being out of bed more than he was in it. The operative words "out of bed' do not mean he was suddenly able to use this wakeful period in any remotely similar fashion or level of activity prior to the onset of his illness. For the most part, a trip to the grocery store just plain did him in. This disease can and will turn an active, ambitious, young adult into a ghost of their former self. It is incredibly devastating just to observe. It would break a stone cold heart.
So we stand by, doing all that we can to raise them back up, reserving hope against all hope that funding for research on this disease will be increased in order to provide them with less sedating and more effective alternatives. Like a medication they would actually want to take. We wait with humble anticipation for the eyes of the world to open up and see the reality of the enormous suffering this disease and it's remedy imparts to all who are effected by it, including the families. Including you.
If you want them off the streets, off the news, away from your families, prison is not the answer. The warden named schizophrenia already holds the keys. A cure would be nice. But we'd settle any day for a medication that actually worked as well as insulin does.
If it were only up to the families and if we had the resources, there would be a cure already. But most of us are so busy, caretaking through our tears and managing the almost insurmountable amount of interagency created stress, we have little time or energy left to devote to activism, and political lobbying. Most of us have either depleted our retirement funds, re-mortgaged our houses, or emptied our savings trying to fill in the cracks mental health services do not address from federally funded agencies that expect them to get back to work, pay their taxes and get off the government's back. But you better not buy a car to get there, unless you plan on living in it. And if your parent's buy you a car to get there, it's considered a monetary gift and will be deducted from social security benefits. Social security will pay for taxi services to and from work. God help you if you need to get any where else. Bear in mind, these rules were created at a time when public transit was ample, reliable and viable. We just don't live in that kind of world anymore.
And you don't live in our world. Unless of course the evening news bridges the gap and informs you that another schizophrenic committed another horrific crime. But believe me, they forgot to tell you the part about the parents struggle to get the treatment or the revolving doors of hospitals that are allowed to refuse treatment and return an unmedicated, dangerously psychotic individual back to the streets of your neighborhood. Perhaps, right next door. The world where severley ill, through no fault of their own young adults so scarred by stigma, myth, discrimination, and segregation from your world, that you don't even know where or how they exist.
Thanks for letting me give you a peek. Just one, small, sliver of a peek into that world.
April 08, 2004
The Invisible Pain of Invisibility
Dear Average American Citizen,
I have spent most of my life, educating myself about and advocating on behalf of people with disabilities. My fund of knowledge included disabilities such as Dyslexia, Dyscalculia, ADD, and Bi-Polar. Although accessing services, designing accomodation plans, behavior modification plans, learning the laws, and filing the complaints had it's own share of barriers and struggles, there was for the most part, movement. There were seminars and advocacy trainings, an enormous amount of books to read, supportive organizations to contact, and other various prongs of a network of helping professionals to turn to. In short, the precedents had been set. The funding for research and non profit organizations was adequate enough to enable change.
When my oldest son, the son we never worried about beyond the average parameters of what most parents do, my honors student, was diagnosed as a Paranoid Schizophrenic at the age of 19, I hit a wall!
A Wall of grief on the inside. A wall of 'This disease doesn't count' on the outside!
My son needed help and he needed it fast. I Picked up E. Fuller Torrey and a few other books and read as fast as I could. I wasn't about to screw this up by turning my son over to just any professional, saying my prayers and hoping for the best. I was painfully aware that the right doctor would make all the difference in the world. Fortunately, he was working with my husband when he became ill, so we purchased a COBRA Continuation of Benefits plan.
My plan was simple, find a good doctor, get him diagnosed, get him stabilized while we could still afford it! We knew it wouldn't be long before we would no longer be able to absorb the cost of the COBRA. We had also taken over his car payment, auto insurance premium, and various other bills at the same time.
Next part of the plan was to cancel the Cobra, get him into Community Mental Health, apply for medicaid and state disability, apply for Social Security Disability, & get the Medicare ball rolling. Knowing there would be an extensive wait for the Medicare (two years from the date of no longer being able to work), I was frightened by the prospect of a State funded Medicaid HMO. I knew we were in for one hell of an adjustment stepping down to managed care. But at least he would be covered with something.
Community Mental Health had been highly reccomended by my county's NAMI. So the idea of taking him there and creating an affordable plan of treatment and services through them sounded safe and felt comforting.
I had played an integral role in the provision of care, services, and advocacy for people with disabilities. Even more importantly I had worked very hard in raising the bar on the awareness factor. I had been part of a movement and it had made a difference. I felt a long term plan of care was on the way for my son. One that he would be able to learn to negotiate and manage for as long as he needed to.
Upon arrival, my son was refused to be seen due to the fact that he was not 21 years of age yet. I was appalled. I knew this was wrong. My mind starting calculating the sum of just how many needy people had been turned away by this lie. My attempt to correct the CMH worker fell on deaf ears. I left after promising to file a complaint with the Office of Civil Rights if this wasn't cleared up by the next day. I took my son home, and called the director of CMH. I needed my wits about me for this phone call and for me, that day, my wits were at home.
The CMH Director acted totally unaware. I'll never know if he truly was or not. Stuff like this really bothers me. Not knowing that is, if this was common practice or a genuine ignorance. And not knowing whether or not after we left things would just go back to business as usual until the next individual who knew their rights challenged them on it. He offered to make another appointment for my son the following day.
My son's intake with Community Mental Health went very well. As my son's advocate, he had the right to request my presence during each phase of this first visit. I was also therefore able to be his witness. We brought his records, shared his diagnosis, talked about various services.
The next step was the big switch from his private care doctor to the Community Mental Health doctor; the person who would now be presribing his meds. The only CMH doctor available to do this in our local regional office of the south east portion of my county. The only choice.
Bear in mind, my son was very ill at this early interval. He could barely speak at all. Mostly, in response to questions, all we got was a long blank stare followed by a short 'I dunno'. When he did speak, his word salad was so bad we could barely pull any sense out of it.
The CMH Pdoc was Pakistanian and spoke with a very thick accent. I myself had to drop a class in college due to my inability to comprehend this accent. There my son was, unable to fully comprehend his own mother anymore, trying to believe this new doctor was not just another scary hallucination. The look on his face was one of pure terror when she spoke. He kept looking at me for help. So I became the translator. "She wants to know if you are working honey".
"No. My doctor said no working and no driving" he said with the dead pan look.
I explained we were in the process of filing for benefits.
She raised her eyebrows at me, turned and faced my son, raised her voice and sternly stated "SCHIZOPHRENIA IS NOT AN EXCUSE TO STOP WORKING!!'
I looked at her with what my husband refers to as my 'You stupid s--t look' and said "Whhhhaaaaaat? No........... but it sure is one hell of an explanation !!!!"
At this precise moment, I knew beyond a shadow of a doubt, that we were in big trouble! That help was not on it's way. That there was no help in this CMH office for my son or any other mother's son with this disease.
We left immediately and never went back. We re-mortgaged the house and continued to pay out of pocket for my son's private doctor until Medicare kicked in.
When we find ourselves, out of last resort, at the door of a state funded social service office designed to offer treatment for the specific nature of any given disability and discover there is no one home, where else is there to turn?
What would my son's life be like today, if we didn't have a house to re-mortgage for those first two years?
I have never felt more invisible in all my life. Worse, my son's medical and financial needs had been rendered completely invisible too! He suffers greatly from a running monologue of duragatory remarks by his voices. He feels guilty for everything and feels like a burden to everyone. It took me another month to get him back to not feeling bad about the money we were spending on him because he was no longer working. The emotional pain that this ignorant woman inflicted on my son was invisible to her as well. I took him home and watched him slowly heal from it.
That's the irony of neglect. Invisibility is so painful, yet even the pain of invisibility is invisible too. Neglect is not tangible, it's not quantitatively measurable, yet it remains the underlying form of all abuse. One can not be involved in the process of meeting the needs of the sick, if one has neglected to discover first what those needs are. One can not be involved in the process of treating the mentally ill, by handing out a prescription of Zyprexa and a large dose of shame.
April 06, 2004
Dear Ordinary American Citizen,
For those whose lives that seem not to have been impacted by the tragedy of schizophrenia, this blog will be addressing the fact that schizophrenia is not only everyone's business, but also, the effect of this disease on your life and your loved one's, despite what you have been led to believe, is as real and alive as the people who have been diagnosed with it.
Those of us with a son, daughter, spouse or sibling cut down by such horrible, unimaginable suffering at such a young age, live every day inside a web of fear that you rarely hear of. I am not referring to our loved ones psychosis. I am however, referring to a system of care that has created so many cracks (chasms really) in it's delivey of services, at any point of entry our loved ones can and do fall through. Too often, despite heroic measures on our part, they land in a space well beyond our power to reach them. The potential for total loss and devastation, although immeasurable, is also far too predictable.
At the risk of sounding like a media basher, and a disgruntled viewer of the great American pursuit of sound bytes, the untold story of the schizophrenic journey and that of their families is nothing less than a modern day crisis of media misrepresentation of fact.
Don't get me wrong! No one appreciates the power of the media to heighten awareness regarding critical information that can and does lead to significant change more than I do. In fact, I not only honor this power, and those who are motivated by it's intrinsic reward, I count on it. Making a differece is some of the best life has to offer as far as I'm concerned.
But when it comes to this disease and the monster the media portrays, you have no idea how much your life could become better, safer even, if the truth of this illness were given the equal attention that is assigned to just about any other disease.
I for one am ready and eager to attempt to do just that!
Schizophrenia is a disease of the human brain. Period. Try to sit with this knowledge for just a little while longer. A disease? Hmmmmmmmmm? .......... Yes! A disease, like Alzheimers, Arthritis, Multiple Sclerosis, Heart Disease, and Breast Cancer. Human? .............. Yes! It is part of the human condition. It can happen to any one. Brain? ............. Yes! The single most crucial organ of the human body. We're not talking about functional loss of just one of the senses, like the deaf or the blind. Potentially, we are talking about functional deficits and malfunctioning of all of the senses; Sight, hearing, smell, taste and touch. Add to that speech, memory, mood, thought, balance and movement. Pretty pervasive if you ask me.
Has your life ever been touched by someone with a brain tumor? Would you describe them as crazy? Psycho? Nuts? Wacked?
Schizophrenia is a disease of the human brain. Period.
May 24th is National Schizophrenia Awareness Day!
Make it count! Learn more about the disease of schizophrenia, by visiting the home page of 'schizophrenia.com' .