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 April 15, 2004 10:07 PM | TrackBack


"My son never gets to hang up."

Thank you, Dorie, for this insight...and for the peek, however small, into the world you are so valiantly trying to live in...and with.

And for giving me something to pray about.

Posted by: Kelly Clark at April 21, 2004 01:42 AM

This is really insightful. I dont' look at the clouds the same anymore. I wonder what my son would see looking at them. Today he and I talked about how he sees the walls and floor moving. I took a medication once that make me feel (and see) the ceiling lowering. I was able to stop that medication. He is trapped. No they can't hang up.


Posted by: Sandi at April 24, 2004 01:01 AM

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