Sunday, April 27, 2014

Prelude To Stories Unreal

For the first time ever, I am doing a rough sketch of what I will be posting to this blog for Children's Mental Health Awareness Week, which is May 5-12.

Missouri did not officially participate in observing this until 2010, but the experience was remarkable. Nerve wracking. A group of us, many children, many of the adults that helped kindle this fiery passion for wanting very much to give earlier education, reduce stigma, and more that at the moment we could not even grasp.

Governor of Missouri -- Jay Nixon -- signed the formal document, and my picture was taken with him in the process. Another younger teen (at that time I was 23, but sure did not look like it) also had a photo op, and we left for the Governor's garden. Many were to witness this beautiful scene of bright and flirtatious tulips, cascading ivy of several variety...

...and I? Well, I live in the capitol city of Missouri. I've been on the grounds hundreds of times. I opted to trace the stones surrounding one of the fountains....

Something isn't right.


Where I live now, it is an assisted, independent living complex owned by my psycho-social rehabilitation service and granted by H.U.D. Formally, I had lived in public housing, and I really didn't mind it that much. It was no more dangerous than places I'd lived when we lived in Kansas City, and really it was less emotionally damaging than living with my parents when I had really grown too old to live there anymore.

I was told that I had a slot at this new building project, and at first sight I fell in love. The bathroom had a bath tub. There was carpeting. The walls were an inviting tan and red as opposed to that bright white that on some occasions would drive me stark raving mad if my head was in the right place.

Best of all...they had a thermostat. The kind where you can control the temperature. In my public housing unit, we didn't have that. We had two times a year where there was no heating or cooling, then when they would turn it back on it either belched freezing cold wind or heat so unbearable that I'd just as soon go to bed under many blankets than die of suffocation from the heat.

From there, I was giddy with excitement of living in a real home like atmosphere. I was given a very short version of the rules (all meds at the med station, curfew except since I was my own guardian I could stay out I just had to call, no alcohol allowed in the building, smoke outside only except I don't smoke so that was redundant...

I signed the dotted line.

I signed the dotted line, and lost more than I had ever thought possible.


August 2012: I am up at 5am and wanting to hit the gym up the street. I am told in a lackadaisical tone that I would not be permitted to take my pack my medication, denying me the legal window of an hour before or after the scheduled time. This was an unlawful rule set in place almost immediately and chained many of us to our homes. They did become more flexible with time and enough of my reporting to outside authorities that could do at least a bit of something...but in was the dismissive tone that broke me, and I slammed out of my home and up the street in tears.

Strangers in my home who show no respect for me at a human level.


December 2012: I cannot walk any longer, my gut has shut down and I am in my own apartment unit. I never come out. I never find sleep. I overhear that staff is to check on me on the hour, given the confusion of what was happening, only knowing my life was hanging in the balance. For days I am lost, far away from my own body, but no one ever opens the door. No one ever calls. When I report this to the manager, she tells me that there are other residents here too, so to demand that I be humored with just a bit of contact is impossible, selfish, plus it's in the "notes" that I was checked on.

It was a lie.

Strangers in my home who offer to help me but hurt me instead.


February 2013: I wheel up to the med station after screaming so forcefully that I black out. I ask for pain medicine.

The med tech tells me I need to wait 30 more seconds.


May 2013: I put in a call to Missouri Department of Mental Health to report violation of rights. I speak with a woman, giving dates, names, times, and a sympathetic voice on the other end of the line.

There is a short investigation.

Nothing changes and I have been stifled.


July 2013: I put in a second call to DMH. We do the same song and dance. The control issues, the passive aggressiveness, the screaming, the HIPPA violations left and right.

Again, nothing changes.

But one staff comes up to me and mocks: "If we're treating you so poorly, then why do I still have a job?"


December 2013: Bed bugs infiltrate my apartment. Given I am sick, I figured the PSR would help me find shelter until the bugs could be fried. They don't. They expect me to stay in my bedroom for five days until the bedbugs can me eradicated. Without access to any of my medical supplies.

Mom puts me in a hotel, and I am shortly hospitalized.

I am stuck with a bill by a cleaning service that never did the job.

Strangers in my home, jeopardizing my safety.


March 2014: My narcotic pain medication is stolen. The staffing is so deficient that this was allowed to happen. A staff starts rumors that I had implicated several people, but in the interview I said specifically I had no idea who would do something like that.

This same staff person is known to be verbally abrasive, passive-aggressive, and a hypocrite as she jams to Gospel music while at the same time treating me like less than an animal.

Strangers in my home. I thought I'd left my nightmares.

They've come back.

But they shall not prevail.


This is not past. This is present, and it is only getting worse. This is a very short version of my own experiences in psychiatric care just for the last two years. I've been in the system since I was a child.

I want to emphasize that it isn't that the workers are evil people. Nothing could be further from the truth. Many here come only out of the best of intentions, only to come up against my same frustrations, and they too are victims in what is currently deemed appropriate. There's nowhere near enough money, not enough help, we still find the outside is largely ignorant of people that are deemed Insane. And the ones who care for them? Many times mocked, if not something more cruel.

And in the end many of us lose our voice.

So here is a mere glimpse into my everyday life...and should paint for you a vivid picture of why mental health care is so dear to me. And more so for children. I do not want the next generation to be caught in this trap strewn with carelessness and lack of empathy.

I will never, ever stop using one of the only things I have in my arsenal:

My words.

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