July 09, 2005

Dear Oprah.....Another Letter

Dear Oprah,

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.

Posted by Doe at 11:03 PM | Comments (4)