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.