In our last issue, you may remember, we printed an article, Messengers, by Joy, that told of her hard journeys to visit her son.  We just received the following letter from Joy, and are happy to hear that this newsletter may make a difference.  We look forward to hearing other stories of your experiences, do not forget the power that sharing your story can and does have!

- The editors 

(Email contributions to Annalenahh@yahoo.com or mail to P.O. Box 360, Santa Cruz, CA. 95061)

Letter from Joy 

Hello Anna,

I am celebrating because my son has been transferred to Redwood City, from Sacramento Facility. This was my hope and finally "the system" listened. And I want to thank you and "A Breath of Fresh Air", because I sent my article to both the Social worker and the conservator, and who knows who else read it, and I believe it was what tipped the scale for them to listen and put Mark closer to family. I was physically at my wits end, as I shared with the NAMI-SCC Coping group. I can't help but think that when I told my story, in an actual Mental Health newsletter, that it struck a cord in the people that make the decisions. Perhaps "they" could see that REAL people were needing a change for the better, and also I can't help but think that written articles "expose", (both myself, and the system, and my very REAL son!) Thank you for putting "Messengers" in the newsletter. I believe that is what did it! They must have got the message!!!

Thank you again!
Joy

“MESSENGERS”  by Joy

My son is 40 years old and has had schizophrenia from his late teens. He has been living in a locked facility for 7 years, and is “stable”. Prior to this he was living with his wife for 7 years. The joy of his getting married was such a blessing, and I thought he would be with her from then on.  She tried, and took good care of him, but the illness took its toll, and he voluntarily committed himself for evaluation.  He tells me, “It somehow turned involuntary”. After 4 years the conservator-ship was taken from his wife, without her knowing, and one of the “authorities” even told her they were “actually legally separated now”.  I believe this false. He was in a facility, just minutes from their home for the first four years, and she visited him regularly.  Then he was transferred “to a better physiologist,” two and a half hours away.  She works full time and rarely visits him now.  His collect phone calls to me became rare, though I still called him.  He said he liked the first facility better. I have tried for a year, talking to the conservators and social worker, saying that he needs to be transferred closer to the person who will be visiting him regularly, and more frequently!  I go every three weeks, and visit 2 hours.  I take the bus from Santa Cruz, to Amtrak. Go the distance to his town - which is a three and a half hour trip, and take a taxi to the facility. I leave at 7 am and return home, exhausted, by 11 pm.  The transferring request is something I will continue to work on.

However, my point of sharing is something else.  For all the years he has been ill, I rarely talked about his schizophrenia to anyone, except my sisters. I would scrutinize people carefully before trusting them with something that was so painful and confusing. Also, I didn’t know anyone that had a family member with mental illness, and did not know there were “coping groups”, (that I am presently attending). Gradually, the pressure of my own silence shouted at me for change. I went to a wonderful counselor last year and was first helped out of my own cocoon of suppressed confidence in myself, which existed long before his illness; and then, we opened the door to “my freeing him,” and I haven’t stopped talking about him since!  Transition from seclusion to verbal advocacy is a new horizon for me, like  “A Breath Of Fresh Air”, and I am so glad it happened.

It began within the long hours, going the distance to see him, and talking to strangers.  They would appear, with “messages” for me.  I began to say to myself, as I waited in the crowd,  “Who will it be today?” I would take my seat and someone would show up next to me.  I would tell my fellow traveler where I was going, and I experienced compassion, and some “crumbs of wisdom I devoured as a banquet.” One woman said, “Your son knows he is in a safe place.”  Where I had only thought “ He is in a safe place, not outside on the street.” She also said, “Watch for clues.  He may be content in some ways you have not thought of.  Your son will be honest because he has nothing to hide.” And,  “You are doing all the right things”. Another “messenger” I had been sharing with got ready to leave the train at her stop and then doubled back and took my hand, squeezed it and said  “Now don’t you worry about schizophrenia. Just think of all those amazing things that go on in his mind.  Think of schizophrenia as an adventure!” (Yea, some adventure!) But she wanted to help me feel better! 

The taxi drivers even had   “messages”.    I will never forget one ride back from the facility - I was in tears waving good-by to my sweet son, as he stood behind the window, waving back.  This driver, a loud burly man, with a thick accent of some sort, said, “God knows the beginning to the end!  He sees things different!  Everyone is a special case!”  We were breezing along in the taxi with the windows down and my hair flying. I told him my son had a sense of humor and he exclaimed, “That is a gift from God!  Many people in the world are very negative and unhappy! It is a gift!  You must trust God!”  Another taxi I hailed down, after I bought the typical hamburgers and shakes, on my quick walk from the train station, greeted me by, “I know you! You’re the lady who takes goodies to her son!”  I was pleased to be recognized, on my solitary journey.  Another visit I was very blue because my son said he was tired and I may as well call my taxi. I had only been there an hour.  Also, they moved his bed from a decent window view to a room in the middle of the facility - the middle bed of three. The room was dark.  The taxi driver said, “The window of time was open for your hour together and then it closed.  But it will open again!”  Yes, the strangers were kind, except for one, and because I was tired and glum I didn’t tell him off.  He came, and laughingly said, “Oh good, a real person called!  People call from here and tell me they want to go home.”  I replied, “Yes, they want to go home.  Wouldn’t you?  My son sure does!”  Then I explained what I knew about mental illness.  He was quiet the rest of the way.  I have not forgotten his remark, and I will use it to spur myself to speak even louder for these dear people that need our love and support. 

I give thanks to those strangers who came along, and the messages of encouragement they delivered, helping me from silence, into productive advocacy.  And with this “message of comfort” from poet Emily Dickinson,

 “Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all,”

I thank you for listening.

Editors’ note:  Readers, this is your column.  Talk to the rest of us with things that inspire, poetry, literature, or experience, what ever you would like to share.  Send your contribution, preferably by email, to annalenahh@yahoo.com or mail NAMI-SCC Newsletter, P.O. Box 360, Santa Cruz, CA. 95061, our deadline is the second Monday of February, April, June, August, October, & December.

Opinions expressed in this web site do not necessarily reflect the views of NAMI Santa Cruz County, NAMI California or any affiliated organizations.  We attempt to present a balanced perspective on issues by presenting multiple viewpoints.

Copyright 2005 National Alliance for the Mentally Ill Santa Cruz County, All Rights Reserved.

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