Tuesday, January 19, 2010

Kids Falling Through the Cracks

I just got off the phone with my good friend who lost her son December 20. Yes, tomorrow will be one month for her, and I could feel her tension coming through the phone.

What she wants to do with her grief and energy, however, feels so much bigger than me writing a simple book--she wants to go to Washington.

The thing that has bonded us all these years, the thing that has equalized us now, is our children: her son Neddy and my daughter Stephanie. Both suffered from mental illness that caused them not only to abuse and self-medicate themselves but also to be crafty enough to get around the loopholes in the system.

You see, there are great laws out there that were put in place to protect people from being wrongly committed to mental hospitals (ever see the movie "Frances"?). [reference to laws on mentally ill]. But our children fell through the cracks. Stephanie was admitted five times while she was a minor, and when she took her meds, her perception of reality more closely matched the widely-accepted perception of reality. I say it that way, because who am I to say what is normal? After she moved away, she was admitted many more times, voluntarily and involuntarily, but because of her intelligence and craftiness, she knew how to say things in a such a way as to be judged "competent" and "not a danger to self or others."

Her son had a very similar story. We all know how it ended for both of our kids. We ultimately lost them. How much differently could these stories have ended if we had been able to get them adequate care?

I can tell you that at the time of Stephanie's death, I had been fighting to get her declared a disabled dependent for the purposes of my health insurance carrier. When I got there denial email, I fired back a response, "You don't have to worry about her anymore, she's dead."

They, of course, expressed their sympathies, but we were at a turning point with Stef. She was actually willing to get some help, and she was in AA. But we could not get her insurance. And the laws would have protected her if the voices in her head convinced her that she needed to get out of the hospital. Mental illness is hard to diagnose and hard to treat. It's especially hard to argue with a schizophrenic or schizoaffective patient who is seemingly lucid, viable, and upright. These kids are wise and intelligent. They know how to work those laws.

What she wants to know is: "How do we get the laws changed? How do we make sure that no other mom has to feel this way?"

Good question, my friend.

I'm looking for ideas, stories, and anything else you've got.

Go! D


Cloudia said...

More power to you both!

Aloha, Friend

Comfort Spiral

HEATHER said...

What ever you ladies come up with I will support. My family has been touched by suicide and mental illness, so I know something needs to be done-I'm just not sure what.
The Frances Farmer story is so like what my great aunt went through, she and her mother would have an argument and great grandmother would have her committed where she would get electroshock treatments, ice baths and other horrible things done to her. This happened at least once a year. It was horrible. So there really needs to be some way to get someone treatment without it being subject to abuse.

Maggie May said...

If it did end up that these laws could be changed, through you two starting something, then something good will have come out of two tragic deaths.
I really wish I had some answers but keep trekking down these pathways and I really hope that you start something BIG!

Nuts in May

Syd said...

You might want to start by talking to NAMI and its lobbyists. I would think that an established group that has some clout would have a better chance. Best of luck to you. I hope that something comes about in the way of positive change.

BREZZ said...

syd seems to have the best place to start. other than that-- my own first thought?
with Obama-- and his universal health (S)-care program in work? mental health care will only get worse-- never better.

mental health-- is always the first on the list to lose funding when it comes to budget cuts.

i know first hand-- how to work the system-- and how the system doesn't work.
with insurance-- without insurance-- life or death for the 'patient.
'we're' just numbers... and dollar signs. statistics. and problems.

many are miracles to be alive-- and others? you and your friend would probably trade in a heartbeat for your own children. a waste of air-- but still -- someone elses child.

to the government? a number- a problem.

never a voice. never a life. never someones child. wife, husband, brother or sister. never someones friend.

that is why so many with 'problems' disappear, or die alone, or go unnoticed for periods of time before 'being missed'.

'we are taught, that we don't mean anything to the world.'

that is what needs to be changed-- before anything else. the thinking of the rest of the people. otherwise-- nothing else will change.


Daryl said...

I remember reading Frances Farmer's autobiography and feeling depressed for weeks after ... I hope you and your friend find a way to plug the holes ...