Peer Support

I'm back home from spending a week with my parents and brother in Florida.  The voices were mostly quiet, but I did experience some restlessness, which is like a lesser form of anxiety.  I loved seeing my mother and father (though my father was rather quiet this trip) and my brother's company is mostly quite welcome (except when I need a break from talking).  I think some of the stress I felt was due to not having a room of my own to retire into.  I slept in the living room and often had some time to myself there to finish reading Adyashanti's book, which I did.  I meditated a couple of times and just pondered space, asking the questions -- Is this space aware and alive? and What am I really?  It was good to do some reading and meditating, it renewed me so that I could be attentive to my family when we joined up again.  Basically, all went well, and I felt confident that all would be well at home with my seven cats because Sam was there to take care of them.

I'm resigned to the fact that I can only see my parents for two weeks out of the year because we live so far away from each other.  It's not the way I want it; it's just the way it is.  So I now call them once a week and let them know that I love them.  Being consistent with that is a new thing for me.  Usually I've withdrawn into myself, isolated myself, forgetting to stay in touch.  I attribute my new behavior to Sam's good influence on me.  Little by little she is teaching me how to take care of myself, my home and my family better.  I feel grateful to know her.  She is  becoming a part of my extended family.  Yesterday she picked me up at the airport and drove me home; then we sat outside and watched my cats wander around the cat pen.  That sounds so ordinary, but for me it was rather extraordinary.  I never sit outside, though I live in the country and so I never let the cats outside, though Richard built this spacious, sturdy cat pen with enough room for them to run around.  Sam says I need to soak up some nature, sit outside, go for a walk in the woods, do some gardening, just get out of this house so I can actually connect with something larger than my living room.  By right away letting the cats outside when we got to my house, she's gently pushing me to change my ways.  And small changes can lead to bigger realizations.

Then she left to go back to her home so she could work in her garden; the first thing I did was round up the cats and bring them indoors again.  I got a little paranoid sitting outside alone.  So what am I finding?  That I can't change overnight, but that working on changes with another person that I trust I can gradually come out of my shell.  It's amazing what just one thoughtful, hardworking person can do for someone like me.  I welcomed her into my home and she's been nothing but gracious and generous in return with not any condescension.  While I was away she did one thing that especially touched my heart -- she cleaned up most of my loft space.  What had been up there?  A couple of kitty litter boxes overflowing with turds, bags and bags of used kitty litter, heavy and hard to get down the small spiral staircase.  I have been ashamed about not taking care of that space, of being too depressed and lazy to deal with it.  Sam did the dirty work that I had no motivation to do.  Is that fair?  No, but God was it needed.  She also suggested that I buy the more expensive clumping litter because it is much, much easier to clean a little at a time instead of throwing out pounds and pounds of used, cheap kitty litter.  I felt so relieved and so foolish that I hadn't thought of that before.

One of my points in appreciating Sam is that people who suffer from mental illness and live alone need at least one person to come into their living space to teach them some very practical things and approaches.  This special person (or people) needs to be a trusted friend or family member.  Many of us who suffer with the symptoms of schizophrenia intentionally isolate ourselves.  It's going on fourteen years since I became acutely ill and it is only now that I am letting one person get close to me.  I believe my recovery would have progressed much more quickly if I had had access to mental health support group geared towards people with psychotic disorders.  Local, easily accessible support groups should be dotting the countryside as well as the major cities.  People learn from people who've been there.  These are people who have not only survived the acute stage of psychosis, but who have embraced some form of recovery in behavior and attitude.  Acutely psychotic people are typically not going to trust family members and doctors as much as someone who has walked in their shoes.  I turned for support from other people with psychotic disorders here in this blog with other bloggers and on online forums primarily for schizophrenia sufferers and sometimes their caretakers.  The internet has been a godsend for me because I live in a poor, rural part of the state with few services.

This blog in particular has boosted my confidence; I respect myself more and understand myself better for having stuck with this blog.  People I respect read my words.  People who have walked in my shoes one way or another and have suffered from depression, anxiety and/or psychotic disorders.  But recently a mother of a young man who suffers from schizophrenia started a blog called "Cracked To The Core" which you can find HERE.  She calls herself Juju and she writes with passion, sincerity and skill and I hope some of you check her blog out.  I've added it to my Blog List.  I'm glad she drew my attention to her blog because I don't have anyone on my Blog List to represent a caretaker's perspective.    Mostly I've listed blogs by people with schizophrenia and schizoaffective disorder, but really it occurs to me that those of us with mental illness and our family and friends could benefit from widening the circle and sharing our perspectives with each other.  Our blogs are another form of support group where each individual gets to shine in writing.

Here's a suggestion that the voices just made to me:  set up peer run, Skype, one on one meetings for those people who have no access to support groups or for those who don't have the motivation (negative symptom of schizophrenia) but need contact with someone who is in recovery.  Here's some more of my own thoughts about that:  make it a non profit organization run by volunteers open to the public.  It would be like a video conference between a peer counselor (and potential friend) and an individual looking for some support from a safe haven.  It would take a somewhat structured approach I think similar to Al-Anon and AA and a daily reader for people who have suffered or are suffering from psychosis--preferably several of them.  The volunteers would be trained the way hotline volunteers for domestic violence and suicide are trained.  Imagine the confidence building capacity for both the volunteer and the person who reaches out to try to open our hearts enough to ask for help and give it.  Maybe there could be a online directory of the volunteers that shares their history with mental illness, their badges of endurance and courage and people could go to the main site, pick someone with similar interests, older, younger or the same age and request to set up a time to have a video meeting.  Maybe the volunteers have at least one person on duty all the time.  I would think that there should also be a written forum to go to to talk to other people, maybe to get referrals for which peer counselor to consult about a particular problem.  Say some  counselors may have strong experience with drug addiction or homelessness or severe paranoia or with living alone or in a family or halfway house or any number of life experiences both positive and negative.

It seems to me that if we all do some brainstorming like this, we can come up with treatments, maybe even solutions to all kinds of problems and struggles.  It takes good ideas and I think many people who suffer from psychotic disorders have good ideas.  What they and I need are people deep enough into recovery to have regained, or discovered for the first time, their motivation, even ambition, to commit to being those volunteer peer counselors.  One of the reasons I need several peer counselors is quite simply to gather in information about different people's experience with the voices.  I have not talked to a single soul face to face about their experience with the voices.  There are millions of us in the world and I have not had a close enough contact with my peers.