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 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.

Posted by Doe at August 29, 2004 10:06 PM | TrackBack


Oh Doe, I am still crying. After reading the messages from the blanket project blog and now this. These are the unspoken fears that lay not far in the back of my mind. The ones I don't dare verablize for fear it will make them come true.

I try to live in a little denial, these things will not happen to my son, my mother or my sister. No - not them, we are taking care of everything we need to. But I have been through a some of these with my brother, my father, my friends and deep down I know they can happen in a split second. One down hill spiral and things are suddenly out of control.

These are PREVENTABLE TRAGEDIES and it makes me so FURIOUS that our chidren have been ignored, or insulted, dismissed as humans, subjected to poor quality care and red tape that no one can decipter. We, the families, are the only one that care. Love and caring can't fix this.

We are millions of Americans - why?

There are many success stories and recovery and success doesn't come quickly or easily.

This is the 21st Century and schizophrenia is not a newly discoverd disease - everyone deserves to be a success story.

You guys just let me know what our next move is - I am right there.

Posted by: TampaBayMom at August 30, 2004 12:45 AM

i am searching for some answers. I look at my situation and then a reality check sets in and i look at the whole picture from an outsiders point of view and my jaw drops. sheesh!! it is kind of hard to seperate the two, but heck. who would have thought this would have happened... I could use the media and make something of it on behalf of our mentally ill children/families. And yet, I am not wanting to go there, for it would last about two minutes, if that. the fifteen minutes of fame, that Andy Warhol spoke of, have shrunk due to the sheer volume of tragic stories or maybe attention spans of everyone. Do the horrific things even faze people anymore? I am too cynical today. But truly wanting to look at the system, and make some changes. The biggest thing I see, is that families are the last to get help. It's going to be a piecemeal thing at best. And I really mean it, until they, everyone out there, including the buttheads in the Congress get it, AND THE MEDICAL COMMUNITY PUSHES THE DRUG COMPANIES OR SOMEONE OR SOMETHING that this needs help, and you can make money from it, seriously, then it will remain the same.

Posted by: chaiteacity at August 31, 2004 01:26 PM

I have thought of you and your family each day. There is not answer for something like this. There is no answer for the manifestions of schizophrenia. It is a horrible, horrible disease.

You are absoluetly correct, going to the local press probably would not make a difference.
I am so pleased that the press wasn't hounding you, as I have often seen.

I continue with Doe's expertise, with awareness projects. I knew nothing of the truly inadequate services until fairly recently. I never put two and two together -- the lack of care for my brother and father was a total failure in the system. I go to medical doctors and they are very concerned and caring. Go to a PDOC or some social service, and they are not. It just boggles my mind.

My husband continues to support my efforts, we made silver ribbons, mailings, the blankets. He can now even quote facts to people. Than he reminds me that it has always been this way when it comes to mental illness. But aids activist and parents of the developmental delayed finally instrumented change.

Maybe I am just new at this, maybe I have to much time to think - but I believe that "something" will one day get the attention of "someone" who can make a difference. We have to find the person and the right angle at the right time. I know Mrs. Carter tried and it was met with great resistance. Now they have a world-wide association, more active in countries outside the US.

The only thing I know for sure is that the more I deal with mental illness on all levels, the less I truly know.

Our children and loved ones are not kept in bubbles. We take them to doctors and therapist, caseworkers and programs. They are in contact with so many people that could do something to help them - but they don't.

For now, I will keep trying everything I can think of.

Please take special care of yourself, you touch so many lives.


Posted by: TampaBayMom at September 1, 2004 04:43 AM

TampaBayMom & Chaiteacity,

I believe there is a solution. I believe there is an answer. I hope it shows it's glorious face in our lifetimes. But even if it is a thousand years away, there is still so much work to be done.

We all must play our part. These roles were given to us. It is more than enough for any one person to contend with.

Somehow between the deluge of forms, appointments, grief, and all the enormous responsibilities that reside in the caregivers role, there is always an opportunity to do something.

There are no crystal clear rules of measure as to what will constitute change. It could be something as simple as one word, one idea, one mother.

Posted by: doe at October 5, 2004 02:48 PM

Post a comment

Please enter this code to enable your comment -
Remember Me?