Saturday, January 14, 2012


It's been ages since I've written anything here.  I guess it's because I've been waiting for that stupid other shoe to drop.   It hasn't.  And it is really annoying me.

JSB left the supported environment in which he was living, and has opted to live in a cheap motel.  Cheap, but clean (relatively) and, from what I can tell, safe.  This went down in June.  Since then, I have been waiting.  With dread.  I really did try to be optimistic and positive.  I swear.

Not only did he not want to live with support, he opted to give up pharmaceutical support as well.  So, Furball and I can tell the voices are back.  JSB has gotten better at hiding them from us.  Because he knows what we will try to do.

So, I've been waiting and dreading and I don't like the way this feels.  Optimism is so much sweeter.  Dread has settled in my chest like a hot, heavy, hunk of lead.  It makes me realize that my reservoir of hopefulness has nearly gone dry.  It's feeling a little parched and barren and thorny.  

Looking for hope in the land of dread is not fun.  But, I know it has to be there somewhere.  Is it out there or is it within?  

So, I am wishing for joy, but I feel more like this.
I can't decide if I should hang out in lamentation land for a while or try to move on to joy.  The story is supposed to end with joy.  Sometimes, I wish we could get on with it and just fast forward and jump ahead to the resurrection. 

I think I need to watch closely the Blessed Mother and take a few cues from her.   Sweet and Blessed Mary, this heart-pierced-by-a-sword thing stinks.  Please come down and give me lessons, some pointers, some hope, some joy.


  1. Hi, Diane,
    I've been down that road, but have been seeing light at the end of the tunnel. I'm going to jump in without asking permission to talk about my son and my personal observations for helping him to be well. It has been a long road since he left university in his second year. He is now 28 and is thriving and so are his father and I. First thought: Your son needs to be at home with his family. People with his diagnosis need friends and family more than ever. The more they are isolated, the more they hear voices, and the more other people push them away. Second thought: You say "he knows what we will try to do" and I assume it means force him to take meds. I was the opposite. I wanted my son off the meds and I fought long and hard to get him off them. Perhaps you have heard about Robert Whitaker's book, Anatomy of an Epidemic: Psychiatric Drugs, Magic Bullets and the Astonishing Rise of Mental Illness in America. If you haven't already done so, you should read it. You may change your opinion about the value of the meds. What is missing in helping people with our sons' diagnosis recover without the meds is empathy, human understanding and time out to heal. Our North American perspective fails to see schizophrenia as a spiritual journey, and can't understand why the person can't hold down a job or go back to school. In my son's case, a job is only becoming possible now. I dragged my own son through all kinds of alternative therapies, which all did more for him than the meds, but a person may not need all of that. The trick for the family is to practice Low Expressed Emotion and to treat their relative with utmost respect at all times. It took me a while to get to where I am today. Although I am a regular churchgoer, I did not find the Church with a capital C especially helpful when it comes to mental illness. It seems to have forgotten that Jesus cured the demon possessed on several occasions. Now the Church views mental illness as something treated by pharmaceutical companies and it equates driving out the demons to just a "miracle," as if the cures that Jesus brought about don't happen today. I found a lot of strength and inspiration in practicing yoga and learning to meditate. So, that's my unsolicited two cents worth. Your son can be completely well one day, but it involves repentance on our part, meaning those around our relative must change both our beliefs and our actions. Personally, I find all that I have gone through with my son, an incredible spiritual journey.

  2. Rossa -

    I appreciate your input and your experience very much. While we have many similarities in our stories, there are many differences as well. It seems your son's onset of mental illness was in college, and that he had many years of more "typical" brain function. JSB's onset was at age 3, and he has been battling this for his entire life. So, he doesn't have the years of typical brain function upon which to fall back. You are fortunate that your son is open to treatment options. My son does not perceive himself to have a problem. So, this horse is not interested in coming to the trough, let alone drinking the water.

    He is alive, I believe, because of the faithful prayers of intercession and healing by many for many years. I am involved in a hands-on healing ministry and also have practiced contemplative meditation for 20 years. I also study alternative mystical paths -- Buddhist, Kabbalah, and Sufism -- to enhance my own healing.

    Your story of hope is encouraging. Please hold my boy in your powerful prayers.

    Thanks for your comments.

  3. Schizophrenia is rare in young children. Do you mind sharing his story? Looking back on it, I could make a case that my son was unusual even pre-birth.

  4. Yes, my son was unusual pre-birth as well.

    He's had every diagnosis under the sun, and you're right, they don't diagnose schizophrenia in young ones. A pdoc did call it when he was about 12, but others wouldn't go there. He was received special education services for learning and behavioral issues from a very young age; and he spent most of his academic career in alternative schools -- as well as a year and a half spent in residential treatment as a young teen. He has been in and out of hospitals more times than I can count.

    He had his hallmark schizophrenic "break" in his late teens, but there were indications of hallucinations when he was very, very little as well as extremely "manic" and aggressive behavior. He also has a serious history of substance abuse -- not uncommon with young men like him.

    The actual dx mattered less and less as time went on. It appears that when the central nervous system was developing, something went terribly wrong.

    I don't believe that a "pure" case of any mental illness exists. It's like a syndrome of many, many misfirings going on at once.

    The last twenty years have been spent desperately trying to find help for him, with nothing working for any length of time. And now, he just wants to be left alone. We stay connected on his terms and watch over him as best we can from a distance.

    For now, his delusions and the voices keep him company. That's his desire, but I would argue that it's not a not a lucid desire.

    I am all for alternative remedies for all kinds of health issues. But, I don't rule out standard pharmacological treatment as well.

    We can differ there, without argument, and respect the common ground upon which we stand, and bless the shoes in which we walk.

    Blessings to you!


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