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 April 8, 2004 08:34 PM | TrackBack


Big hug to U////////////////////
The biggest problem is the attitude of P-doc towards patient. It is the painful experience. I feel myself some lucky as first pdoc was understandable. jsut some dose of medicine is really nothing to cope with it.
God bless all of us.

Posted by: Nick at April 9, 2004 08:27 AM

It's Not My Fault....

When I first heard the word, I never once thought about it being my fault. I had watched my mother and father blamed for my brother. I watched my mother try to "love" my brother well.
I want to know how Freud got to be an expert.
I grew up a very disfunctional setting, but never blamed my parents for my failing. I figure we are all individuals with our strengths and must take adversity as life expereinces.
But as time goes on, I too like you sit up at night sometime and wonder if I could have done something differently years ago. I am told he must have suffered a tragic experience. I can't think of one. Not enough to cause something like this. Was it medications I took when I first conceived. Was it the fall I had late in the pregency. Was it the medications for tourette's we gave him a an early age.

Just know it isn't our fault. It is like my arthritis and the tourettes. They don't know. They can't track the specific gene yet.

And in the end had it been something preventable - it's not though - we still have to focus on the near and now.

We are all good parents, look how much we love and care about our children. Look how are hearts break for them. It is not our fault - and we will be the one to get them though this with the ups and down.

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