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!'

Posted by Doe at 04:16 AM | Comments (2) | TrackBack

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.

Posted by Doe at 10:07 PM | Comments (2) | TrackBack

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.

Posted by Doe at 08:34 PM | Comments (9) | TrackBack

April 06, 2004

Sound Bytes

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' .

Posted by Doe at 12:22 AM | Comments (8) | TrackBack