I got the third call in two weeks today.
Tim’s psychosis seems to be rearing its head fast and furious this year. Just this week he’s lashed out at classmates, broken a window, thrown items at and yelled at staff. He’s told his case worker that the voices are back and are loud. We went up last Saturday to visit and he seemed good, but he also seemed to be holding on. We went to a movie and when I turned to him to make a comment or see if he thought something was funny, he was in a trance, unable to be stirred, seemingly staring through the screen, not at it.
My mood has deteriorated with each call. I am physically affected by each report. I curse myself for talking about how stable Tim is, and how well he is self-advocating, as if talking about his progress condemned those pluses to eventually failing. I get a shiver up my spine, thinking about Kelly Thomas and my conversation with a special needs attorney who informed me that, even with legal plenary guardianship when Tim turns 18, I can’t legally force him to stay on his medication and treatment.
I swallow the real fear that Tim will end up living a life in and out of treatment, on and off the streets, in and out of danger, and swallowing it only keeps it down for so long. Today at my desk at work, it came out in the form of tears, trembling, and irritability.
I drove into the city yesterday, and at a red light I saw a man on a street corner, clearly homeless, seemingly mentally ill, having a conversation with thin air. It was a highly animated conversation, and, while I couldn’t hear him, I could see the conversation both frightened and annoyed him. I sometimes feel the only difference between him and me is that his mind allows him to shout his anger at the wind, whereas mine makes me hold it all inside. I’m starting to feel, either way, the anger is killing us both, equally.
I can so relate. But there is one difference between you and the man on the corner, he is locked in a world where the anger terrifies him and annoys him. He has no way out other than temporary respites when he is forced to take medications.
I realize he epitomizes your fear of Tim's future, but right now Tim is getting the help he needs. He is in a place where his needs are monitored and taken care of in a timely manner. We just have to have faith that what you are doing today will benefit him in the tomorrows to come.
You can and will come through this. This too shall pass, and your son will have another period of plusses that will allow you to relax and smile again. It's ok to smile and enjoy your own respites from the anger and fear, because without them we would all be standing on the corner trapped.
I'm so sorry. Thinking of you all.
Chrisa, being upset about this is totally normal, but don't think you "condemned" this to happen by talking about his progress.
He HAS made progress, self advocating is important, and the more he feels he is involved with his meds and his treatments the better.
When you were writing about all the progress he was making, you were also saying you were waiting for the other shoe to drop, and it has, but that doesn't mean he won't continue to make progress when his psychosis abates again.
Make sure you talk to people, lots of people, about what's going on. I know you do so much to help other families, make sure you remember to get help too.
From someone who has gone through 22 years of this, the only advice I can give is find a way to have thicker skin about it. I know it's heart wrenching, I know it hurts, but if you allow it to effect you it will consume you. I've been dealing with paranoid schizophrenia for many years now, I went through patches where it felt like I was in a black fog for years and don't know how I got through it alive. After years of walking around with my head in my hands and after suicide attempts I learnt I need to just accept it for what it is. I need to force myself to look it in the eye and not allow it to effect me. I know it's hard for you to stand by and watch it happen to someone you love, god how I know that pain. But try to force yourself to see one positive thing in each negative occurrence as hard as I know that is. If I didn't force myself to be able to find something to laugh about in the face of all this, to try to find one positive thing and focus on it I would have been lost many years ago. There is hope, I know it seems like there isn't but there is or I wouldn't be standing here.
Oh, Chrisa, my heart hurts for you. I know this fear so well, although of course it's farther in the future for us. Our train is coming at us, but we can only just hear the whistle in the distance, while it's bearing down on you with terrifying immediacy.
But every time I see a frightened, angry person who is having an animated conversation with no one that I can see, I start to tremble and that damn train seems very, very close.
I wish I had something helpful to say.
I really like your blog and just added you to my blogroll on my website. I look forward to reading more!
Mama Bear
Chrisa,
I don't know if you remember but I wrote to you a while back when you were posting about Tim's lowering of IQ over the years. I know this is a sensitive time for you and you may not be up for this, but as you may know I am example of a mentally ill child who is now an adult, still suffering, still not properly diagnosed or medicated, and yet still ALIVE. Like anonymous above, I have learned to deal with the "dark fog," to know I just have to ride it out, try to distract myself from self-destruction, and wait for the good moments to come. I do have them. Sometimes once an hour, sometimes once a year. So far, enough to keep me going.
This is my new blog:
http://mymindwinds.blogspot.com/
I hope you won't find my opinions too abrasive. I respect you and would love to have yours.
My friend,
I am a bit late coming to the party so-to-speak, but as Tim has been struggling the last bit, so has my Pickles. It takes so much energy to just pick up those phone calls when you see who it is on the Caller I.D., but we do pick up and we deal with whatever is happening on the other line but it sucks so much out of us. That suckage is something I don't think any of us could ever put into the proper words for those who don't live it, to understand, not really. But your words, and your sharing, does shed a little light into the darkness.