Some Recent Artwork

Just got some new markers and am trying to tempt myself back towards the visual arts.  These images are pretty sloppy because I couldn't get the right white balance in my photo editing program (which is very simplistic and all I know how to use...sort of).  And so white has turned into purple!  Nonetheless, you can get a feel for what I've been working on the last couple of days.  It's all about experimental play and yet, in some ways, it's more serious because I am stopping, assessing, making a new mark all very gradually.  Invariably, I'm scared to make the very first mark.  Scared because I don't have a working plan of action, so then I jump into it.  All I know is that I want to vary the marks on the page and work intuitively.

Home Alone Again

This is the first day in about three weeks that I've had free to slow the pace down.  For the most part, I have not kept up with my online friends.  I apologize for that, but I can only seem to focus on one thing at a time.  Also, before I have to do something with my family I need half a week to a week to prepare and then afterwards I need a half a week to a week to recover.  That's the nature of mental illness for many people I'm afraid.  I can appear relatively normal with my family for a week or two, but then I need to withdraw back into my solitary space.

This was probably the last trip my parents will make to visit Rob and me in New York.  From now on we will visit them only.  My father turned 85 this trip and my mother is 83 and they are visibly slowing down.  The day before I picked them up at the airport my brother had a small fire in his house; he fell trying to put it out and hurt himself and so he didn't come with me to pick up our parents.  It was very good to see them and a day and a half later to see my uncle.  My uncle recently turned 80 and yet he drove from Chicago to Western New York in a couple of days.  I thought he looked great, more energetic than my parents.  He is my mother's younger brother and she hadn't seen him in six years or so.  Despite living a long distance away from each other, they love each other and keep in touch by phone, but, as my mother has often said to me, it's not the same as seeing a loved one in person.

I arranged for my parents and uncle to stay in a B&B nearby.  It was only after a day or two of them staying there that I heard from my family that the owners were conservative Christian Republicans.  My parents and uncle are staunch liberal Democrats and confirmed atheists to boot and so it was a bit awkward for them living in such close proximity to their hosts.  Each side was certainly polite, even friendly, but my family had to restrain themselves and this made them uncomfortable.  Nonetheless, the house they stayed in was nice and safe and they didn't complain too much to me.

I discovered quickly that I had over planned the trip.  I was anxious and eager to please my mother in particular.  Both she and my father are great planners, but this time they realized that they didn't have the energy to do as much as I had anticipated.  And my uncle had the awkward responsibility of following my car with his while transporting my parents while I drove my brother because we couldn't all fit in the same small car.  And then on the birthday day (my brother was born on my father's birthday) as we were beginning the 45 minutes drive to a state park to have a nice lunch at a restaurant in an inn there, my "service engine soon" light came on.  Because we were an hour early, my uncle and I drove to the nearest service station.  It was lunch time, but the owner said that as long as the light wasn't flashing I could still drive the car to the restaurant and back.  And so I did.  The next morning I drove my car with my uncle following to my usual repair shop and dropped off my car.  It only needed a new sensor, but the part was expensive.  So I thought the car was good to go, but several days later, when we had driven to Ithaca, New York, an hour and forty minutes away to have lunch at a Thai restaurant and go to the theater there I encountered another car problem.

It was after we had eaten and after we had finished watching the play that when I tried to pull out in the parking lot, I found I could only move a couple of inches and when I did it made a terrible sound.  I immediately got out of the car and saw that the front driver's side tire was totally flat, but it didn't feel like a normal flat because normally you can still move the car a bit and I couldn't.  I sent my uncle and parents home and stayed with my brother after calling triple A to get a tow nearly 100 miles back to home territory.  Luckily I had gotten triple A plus which covers the cost of a tow up to 100 miles.  The tow truck came in an hour.  The man diagnosed the problem right away, said part of a coil in the front of the car had cracked, broken and sprung into the tire.  My brother and I quickly realized that we had averted serious injury, even death: if we had been driving at 65 miles an hour on the highway hours earlier with my uncle following close behind me who knows what might have happened to all of us?  And so, despite the inconvenience we were very grateful.

My uncle stayed an extra day and drove my parents to the airport and then headed back to Chicago while I had the work done on my car.  I prayed that they all get home safely and as it turns out, they did.  So the visit was a mixed bag, some good days and times and some not so good.  Last year, when my parents stayed at my house, we had a better time, were somewhat closer to each other than this visit.  Still generally speaking it went okay and I was very happy to see them all and spend a little over a week with them.

So here I am back to being home alone and I'm relieved, but it will still take me a couple more days to get adjusted.  A great thing that happened while my family visited was that I got a long letter from a woman I've been wanting to be friends with for several years.  She was responding to a three page type written letter that I sent to her.  She said she really enjoyed my letter and went on to write candidly to me about a few things in her life.  What's particularly cool about this woman is that she is not only a very interesting, individualistic person, but she lives close by.  In her letter she offered to do some work for me fixing my cat pen fencing so that my cats can finally go outside.  My friend Richard created a wonderful cat pen, but cut through the fence months ago to do some work on the back of the house and never got around to fixing it.  Right now he is very busy.  So I'm gearing up to ask this woman to come and visit me.  And I hesitate, not because I have any reservations about this interesting person, but because I have reservations about myself.  I'm so self protective that I don't often take chances.  Still, now is a good time to invite her over because my house is in moderately good order due to my family's visit.  Normally, I used my messy house as an excuse not to have anyone over, but right now I don't want to do that.  This woman is a private person with only a few close friends and I'm finding that I would like to become one of those friends.  So my next order of business is to write a good, long letter back to her.  I'm looking forward to doing that.

Grassroots Festival Digital Photographs

A Few Summer Activities

My brother and I returned early from a four day music festival called Grassroots.  It had been very hot from Thursday to Sunday--hot, humid and practically no rain.  I got some sunburn, which I rarely get and both of us only got minimal sleep, so by Sunday we were burnt out and decided to skip the last day and head home.  The music at the festival was good, but there were virtually no headliners which disappointed us.  Usually when we go there are several A+ bands or singer songwriters like Los Lobos, Lucinda Williams, The Avett Brothers, Burning Spear, etc... so there are high points to the experience.  This time it was hot and mellow, though Fela Kuti’s youngest son Seun was there heading his father’s band (Fela died an AIDS related death in 1997 when Seun was still a young adolescent).  His father was a master at a style of African (Nigerian) music  he dubbed “Afrobeat” partly influenced at points by James Brown, very funky and intense and political.  That got Fela put in prison for 20 months.  Seun is definitely following in his father’s footsteps.  One of the things he championed at the festival was the decriminalization of marijuana.  He was also touching on other political topics, but I couldn’t understand him.  Perhaps I’ll get one of his CDs and listen closely.  I think it takes courage to get up on stage and fight through music and communication some of the injustices in the world.

My brother and I have a whole routine we go through preparing for the festival, going and then coming back.  We stay at the same Indian run motel just outside of Ithaca, New York, which is about a 10-15 minutes drive to the festival in Trumansburg.  We park in the same spot near an off site camping ground.  Most people park in a large sectioned field and then wait for a shuttle bus to take them to the festival several minutes away.  We too get the shuttle, but we park by the side of the road.  We do this because in past years when we’ve parked in the field we’ve gotten stuck in the mud after it rained.  We go to the same Chinese Buffet restaurant on Friday and Sunday before heading to the festival.  Saturday is special because we get to go to a very good Thai restaurant.  We get gai tom ka soup, which is a coconut milk soup with chicken and mushrooms, then he gets a green beef curry and I get a noodle dish with chicken called pad thai.  Why do we get the same thing each year?  Because we don’t get to go to Thai restaurants very often.  But it’s more than that, we obviously get comfort from having a predictable routine.  The routine, which allows for knowing generally what to expect, reduces potentially stressful situations.  I get stressed driving and a bit stressed being around so many people when I’m used to being mostly alone.  Then again, some of the people watching is fun.  This time I took my camera on two of the days and took pictures of people and the fairgrounds.  I got a few nice shots.  It’s been a long time since I was into photography.  I was a film photographer and I’m still not used to digital photography.  With a digital camera, you have to learn the small computer that is your camera thoroughly and I never do it.  I’m intimidated by computers, though I rely on them for information and communication.

My brother was more subdued this year.  Usually he is making conversation with fellow festival goers, often shedding a critical but humorous view on what’s strong and what’s weak at the festival.  This year he said he was surprised that he didn’t see many people that he knew.  It was also in the 90s and humid and as I said, we both didn’t get as much sleep as we would have liked.  Despite the heat and only some breeze, it was good to be outside, good to be around people, good to listen to live music and good to have each other for company.  It was a mostly Caucasian crowd with just a  sprinkling of African Americans and Asians.  Having grown up in New York City, I think the best type of crowds is a multi racial, multi cultural crowd.  So this wasn’t the most interesting crowd to me, but there was still a lot of variety.  Within the crowds amongst the young people and the parents with their children I saw the salt and peppered hair of middle-aged people like myself and even a few rather old people.  Not too many very unusual people except for a man walking on a prosthetic leg, which I thought was wonderful just that he still had his freedom and could partake of the festival.  A few people were even dressed up in costumes with large afro-like wigs.  Some women and children wore butterfly wings.  There were a lot of tattoos on both men and women and a fair number of men with shaved heads.  The women wore all sorts of skimpy dresses in their desire to look good and stay cool.  I wore shorts, a t-shirt and Teva waterproof sandals that fit snugly around my feet.  I didn’t particularly look good, but I stayed comfortable.  So far, my obesity is in the extra large normal range.  I still fit into a bus or car seat and am not aware how heavy I am until I go to the bathroom somewhere and see myself in a mirror.  At the festival, there are many attractive women.  I used to be one of them.  Now I am out of that loop and partially I feel relief at that.  The other part of me wants to look better, not in order to compete with other women, but just so I can feel more normal and healthy.

This Saturday my parents will arrive by plane from Florida for a 9 day visit.  My uncle will arrive from Chicago by car on Monday for a 6 day visit.  I haven’t seen my uncle for four years.  He just turned 80 at the end of June and my parents are in their mid 80s.  For now, they are all in good health, but I still worry.  It will be very good to see them all, but I’ve got a lot of house work to get done this week and a lot of driving and finding entertainment the following week.  Last year, before my parents visited, I did an internet search for things to do in the area.  My planning and preparing was mostly successful and I’m hoping I can pull it off again for the first week of August.  The main problem is that there is not much to do around where I live and so we will have to travel by car one to two hours in each direction.  I’ll have to lead with my car and my uncle will have to follow in his car.  This makes me nervous because we’ll be going to places that I’ve never been to before and I’m afraid of getting lost or worrying about whether my uncle is still following me.  At least now we both have cell phones and can keep in touch even if we do get split up.  My family will be staying at a local bed & breakfast.  Last year my parents stayed with me, but that put some pressure on me to clean up and I didn’t quite get it done and let my mother come upstairs only a couple of times to see the cats.  This year it is just too hot, especially since I don’t have air-conditioning.  Now the cats need to come downstairs from time to time because it is 10-20 degrees cooler...but my father is allergic to cats.  So I suggested the B & B and my family agreed.  Their rooms will be air-conditioned.  Still, I have to get cracking cleaning up my house as best I can because they will visit.  I have four days.  I can get a lot done in four days, if I pace myself.  I might have to change my sleep cycle to the daytime and work at night and early morning, just because it is so very hot.

Climate change is affecting the whole planet.  This is the first year that I got snowed in by a blizzard at JFK airport last December and the first year that I can remember the heat changing the atmosphere at the music festival.  Normally we have at least one thunder storm there, but this year not one.  The days when so many people can own one or more cars each and are free to give birth to any number of children must be coming to a close.  We are guzzling our resources and leaving people to starve to death due partially to overpopulation.  If we don’t change rather drastically, I’m not sure we’ll survive.  What can we do?  People in the US say they really value their freedom, but won’t we all be required to make sacrifices and pull together due to this common environmental threat?  Shouldn’t we be doing it sooner rather than later?  At the festival they were promoting an anti-Fracking position, trying to enlist people into their cause by signing a petition.  Our governor, Andrew Cuomo, is backing the Fracking movement before tests have been done that prove that the procedure is safe for humans.  Business people are frantic and greedy to find an alternate energy source so that we can continue living in excess, even if it means some people will get ill or die because of it.  I’m not against an energy source that’s safe to use for people and the planet, but Fracking doesn’t sound safe.  There needs to be more research done and more regulations put into effect.  Whether we can cobble together various energy sources to survive is unknown, but what we can do is to change our lifestyles all over the planet.  Increase and extend public transportation, even build newer small city/towns that utilize solar and wind energy to the max, possibly return to a more commune like communities where people work together to preserve or extend resources, to recycle, to farm, etc...  There are small communities like that sprouting up all over the US.  Let’s see if they have the right idea over time.

Persistence, Faith & Hard Work

I've had the urge to write repeatedly over the last month, but my output is minimal.  In the last few days the urge has been laced with an irritating depression.  Whichever direction I begin to go in, be it flipping through  books on writing or books on Buddhism or taking a stab at writing in my journal, turns into a dead-end.  I either fidget or I go to sleep.  Strangely enough, when I sit down to write a blog, usually spontaneously and without notes, I wind up writing something halfway worthwhile.  It's just getting myself to sit down and do it that is the problem.  Anne Lamott, who wrote a popular book on the practice of writing called Bird by Bird, says of writing: "It is a matter of persistence and faith and hard work.  So you might as well just go ahead and get started."

Persistence, faith and hard work...I guess that's the recipe for life itself.  I am also a strong believer in the immense value of being creative, especially for people who suffer from chronic mental illnesses.  Lately I've been committing to my Buddhist practice, but neglecting writing, songwriting and painting.  My Buddhist practice of meditation, listening to audiobooks and reading, taking notes and studying is my foundation and so I won't stop with that.  When I meditate each evening, despite my restless thoughts and the discomfort in my back, I begin to focus and steady myself.  By the end of the meditation, I'm usually refreshed and ready to listen to a dharma talk and then to do some reading and note taking.  All this takes place in the evening and night.  It's the day time where I get lost.

Why do I resist the fact that just being alive is good enough?  Whatever I do with my days, as long as it is not harming myself or others, is okay.  I get writer's block because I am judging myself and pushing myself and not going with the flow of life.  It's back to having ambition instead of patience and humility.  The truth is that my life is a simple life.  Another truth is that I think I want it to stay that way.  In order to keep things simple I need to let go of ambitious ideas.  Maybe I will write a book, but not unless I learn to write a good essay.  I have a friend who told me that one of the things that got her out of her depression was the expression, "little by little".  Baby steps...persistence, faith and hard work.

My life is mysterious to me.  I don't know why I'm here; I'm just here.  And I know now that while I'm here, every moment I'm here, I'm changing and my circumstances are changing.  I know this is true for all of us.  I witness the change when I listen back to my audio journal from a few days in the past.  It helps me to acknowledge that I can hold onto nothing.  And it keeps me honest.  Writing here does the same thing.  I've been writing in this blog since about November of 2006.  Very slowly I am printing up my blog so that I have a hard copy to review, maybe edit and re-work.  I think it is important that I do this so that I can follow the flow of my life and see what lessons I am learning or re-learning.  Every now and then I need to review my journals and take stock of where I've been and where I seem to be heading.

My audio journal is a good therapeutic tool, but sometimes I neglect my writing because I'm busy pouring out my thoughts and ideas on tape.  It's easier for me to talk to myself than to write, but writing also holds the key to self-understanding and to sharing my experiences with others.  The more I study Buddhism, the more I want to be helpful to others.  The challenge is to not lose confidence.  That's a big challenge.

Stop Living In A Dream

I've been meditating regularly for over a month.  I went from 30 minutes to 40 minutes of sitting meditation.  I don't sit on the floor anymore but in a chair because when I sit cross-legged on the floor my front leg falls asleep after 20 minutes, possibly because I'm obese, I don't know.  Anyway, the chair is fine.  I set up a small, round table in front of me and place on it in a semi-circle two Buddha statues, one a small, slim Indian style Buddha and the other, somewhat larger, of a very fat, smiling Chinese style Buddha.  I also have a meditation bell and a meditation counter which plays music when the time is up.  Technically, I'm supposed to sit up straight in an armless chair with my feet flat on the floor.  My chair is a fold-up lawn chair with arms and sometimes I sit up straight with my hands on my knees and other times when my back begins to hurt, I lean back into the seat and use the arm rests.  I rest my eyes on the objects on the table.  Sometimes I'm restless and shift my gaze from one object to another.  I have a mug of sweet tea beside me and I mindfully drink from the mug several times during the course of the meditation.  I start my meditation in early dusk and as the sun begins to set, I move more deeply into my meditation, listening to the birds singing outside my windows or sending out a prayer when a car passes by and if there's a breeze, I enjoy the breeze or the rain or the setting sun.

I'm not "good" at meditation the way I was years ago before I became ill.  Before I was slim and flexible.  I practiced yoga daily and at the end of my yoga session I meditated.  I easily entered into the zone which was set up by the yoga, breathing steadily and deeply.  I remained still and focused.  When the formal sitting meditation was over, I would be in a mindful state.  I brought mindfulness to my daily activities, especially eating and washing the dishes.  I also walked mindfully throughout my house, conscious of my breathing, in a peaceful, happy state.  The key to this happy state was in the breath, relaxing into the breath, into the body, slowly.  But now, my breathing is neither so deep, nor so measured and my energy is restless with moments of calmness and focus interspersed within it.  All this means is that I am a beginner and that I must persevere until the periods of calm become longer and longer, setting the stage for  insight to arise.  The interesting thing I'm finding is that even with my rocky, daily practice, I can feel a subtle shift in my general awareness.  For instance, I am more aware of the weather;  I enjoy it more deeply.  When it rains, I listen to the rain and when it is sunny with a soft breeze, I feel the warmth and the breeze.  I notice more.  I notice the beauty of my cats.  In the midst of my sitting, I watch them and reflect on how sensitive their five senses are, how alert and in tune to all the sights and sounds and smells.  I have the insight into the fact that I, too, am an animal very connected to my senses, but somehow I am not as aware or as in tune as my cats, though, with practice, I know I could be.

I'm learning that it is not about being good or bad at meditation, it's about accepting the moment you happen to be in, be it restless, calm, happy or painful.  I'm learning to accept myself and my environment just as it is.  This can be uncomfortable but not unbearable.  As far as I can see everything is in flux.  It's like being carried along by a river, sometimes there are rapids and the water is churned up and other times the flow goes by slowly, but either way, floating in the water you are continually pulled along by the current.  You can't stop it.  You can't get out of it.  You have to go with the flow whether you want to or not.  I'm finding that I really do want to go with the flow, but I have years and years of conditioning to resist pain and embrace pleasure.  When I resist pain, I resist the flow.  So now, I am turning that pattern around and just sitting with the pain, keeping it company so to speak.  I breath into my discomfort and do not reject it or run away from it or act out against it.  This is also called mindfulness.  People who live with chronic pain need to learn to apply the balm of mindfulness to their suffering.  And really, we all live with an on again, off again pain and so mindfulness can benefit everyone.  I think before people can get to the stage where they can embrace their enemies as brothers and sisters on this earth, they need to embrace their own suffering and stop pushing it away or off onto someone else.

I have been encouraged by the Buddha's example and by his many, many followers to see my life as one long experiment into the nature of awareness and existence.  So that's what I've been doing, both meditation practice and dharma study with Pema Chodron, Alan Watts and Thich Nhat Hanh.  I have quite a few audio programs and books on Buddhist practice on my Kindle.  I listen for an hour a day and then I read during the night.  When I finish an audiobook, I return to it and re-listen to it.  I'm trying to encourage myself to do the same with my Buddhist books.  Repetition and study, contemplation with an open mind and I plant the dharma seeds, water them with attention and wait for them to broaden my awareness, to wake me up.  I am already a little less groggy, a little less forgetful.  My experimentation gives me insight into the true nature of reality.  Buddhists believe, and I am on the road following, that most of us are living life in a bubble, in a dream.  We take appearances as reality and don't question the fact that appearances are often deceptive.  Right now, I'm more in the dream than out of it, but I've accomplished the first step which is a very minimal awareness that human make things up to make themselves feel more comfortable.  We invented language and the concept of time but language is an approximation and time is based on a clock, an artificial construct.  Intelligence is natural, language is not; it is taught.  We learn through imitation, but we are not always so careful in our behaviors and attitudes.  We can just as easily teach lies and be followed as teach truth and be followed.  Hence the need for each of us to question and experiment and not blindly follow.

I suffer from depression and anxiety.  My experimentation with meditation and mindfulness is showing me that I have a choice, to follow or not to follow.  The negative has a pull to it, is seductive, worries breed more worries and yet it is easy to fall into it and stay lost with it.  To not follow means to not judge the bad as bad, but to let it be.  That's hard because conditioning runs deep.  To not follow means to stop what you are doing and just sit.  How many of us just stop?  I look at myself when I'm resisting stopping and I see that I have an aversion to it.  I've labelled it "bad" for so long, bad to just exist.  I think I have to have a purpose, that I need to keep busy.  Slowly, oh, so slowly, I'm seeing that to be mindful of my present moment has plenty of meaning in it.  I don't experience true mindfulness a lot, but when I do I can recognize it as some kind of magical gift.  Instead of life being a chore, it becomes a miracle and this little miracle is available 24/7.  It defies description, except to say that it is like a heightened awareness, a subtle adrenaline rush and yet cleaner, purer infused with a sense of completeness and well-being, health, balance, intelligence and peace.  Mindfulness is all about wholesome happiness.  It's always around somewhere, but you have to cultivate the awareness of it, which means you have to stop, stop living on automatic, stop moving along on a conveyor belt, stop living in a dream.

High Expectations Versus Low Expectations For The Mentally Ill

Thank you for your comments on my last blog entry.  I really appreciate them.

Last week I saw my therapist and I read aloud my most recent blog entry.  Her main response was that I was a "high functioning" schizophrenia sufferer and that my route to recovery is not the way for everyone, especially those who have very negative voices.  I know my way is not the way for everyone.  Everyone of my friends who suffer from mental illness have their own unique perspectives, but I question the routine practice of separating those of us with acute psychosis from those of us who are in some form of recovery from psychosis.  I remember when I was in acute psychosis and couldn't read, write, watch television, follow a conversation or contribute to a conversation because I was so consumed with my voices, delusions and paranoia, certainly not "high functioning" at that point.  Then again, I have heard that there are schizophrenia sufferers who are both acutely symptomatic and functioning adequately in the world.  My basic idea is that schizophrenia and related illnesses go through stages, a pre-psychotic stage into often an acutely psychotic stage into the beginning of several recovery stages, if you are fortunate enough to survive the acute stage.  Within the recovery stage there is still room for relapse, which is why, for most of us, we need to reality check regularly, especially with a therapist and/or a support group.  By simply stating that schizophrenia progresses through stages shows that it is a dynamic, flowing pattern that is not static.  If this model of schizophrenia were scientifically accepted, it would offer hope to people who are severely ill, as well as those who struggle through the recovery stages.

I know that there are people who are severely ill and greatly incapacitated, but I don't believe that they are unreachable and I don't believe that they should be treated as if their condition is permanent and irreversible.  I actually believe that there should be a support group system in place in hospitals and in local communities that generally follow the sponsor system of 12 step groups.  What this would mean is that people who have crossed over into the recovery stages of severe mental illness would sponsor or be a special friend to someone who was still in acute psychosis or in the very early stages of recovery.  The sponsor, based on his or her life experience with psychosis, becomes a guide gently leading the way towards recovery attitudes and behaviors.  It's a simple, beautiful system of community spirit in action, one I wish I had in my community.  As it stands, I get most of my support from my online friends who blog about their illnesses; the problem with that is that I don't get to meet people in my offline community, nor do I get the opportunity to be a sponsor to someone.  And so I write in this blog hoping that someone who is acutely ill will stumble onto it and maybe get something from it.  Maybe they'll stop looking at themselves as if they have an incurable "brain disease" with no cure and dismal prospects.

I see those of us who are creative enough to start writing blogs about our illnesses as in the "high functioning" spectrum.  Perhaps my perspective is skewed by this.  I have not been around people when they've been going through acute psychosis; I've only been around myself.  The people that I've met online through blogging and support forums strike me as intelligent and creative.  I've puzzled over this.  Why do all these people suffering from serious mental illness seem, in a lot of ways, exceptional rather than mentally and creatively low functioning?  I think it is because they crossed a line in their illness which gradually led them into the recovery stages.  Part of recovery is reaching out to others.  The computer is an ideal vehicle for mentally wounded people to express themselves and support each other, though I still think face to face meetings are very important as well.  But who doesn't really get heard?  The people in acute psychosis who don't gravitate towards blogging and online and offline support groups.  The people who remain isolated in their delusions and paranoia.  The people isolated in hospitals, restrained with no computer access.  Because I live in a rural community with no mental health support groups, I don't get to see and interact with acutely ill people and those that I interact with online give me a lot of hope that people can recover.  And yet, my therapist almost dismisses me as "high functioning" and different from other more seriously ill people in hospitals.  I contend that most people who are "high functioning" were at some point "low functioning" and because of that there is an unbreakable bond between those who are acutely ill and those who are in recovery, a bond that should be encouraged to grow through interaction and not separation.  I have had the thought several times that I would like to go to a local psych unit and tell my story to the inmates, but that's as far as I go.  What I really need is for there to be community action that sets up support groups as well as brings people who are in recovery into the hospital system to give hope to those still caught inside their illnesses.

I can respect health professionals who have not suffered from mental illness up to a point, but I still say that those of us who have been through severe mental illness are a way underused resource to the mental health community.  My therapist was a bit upset trying to press her point that I was different from those who had to be hospitalized.  She said she knew because she had worked on psychiatric units and had seen people in the midst of acute psychosis.  I think her view of illness is flawed precisely because she has not lived through acute illness.  I know more about what a catatonic person is going through than she does, even though I have not been catatonic.  I know more about being a raving lunatic because I have been one.  My therapist is a good woman and a decent therapist but I trust my own experience and intuition more.  I told her that I thought it was time that health care professionals raise the bar on mental illness.  Low expectations produce poor results whereas higher expectations give a mentally ill person hope and goals to aim for gradually, over time.  Fewer and fewer mentally ill people are staying long term in hospitals.  Now they are back in their communities (if they are not homeless) which is why community services are so important.  Reintegration into society, however minimal, is a goal in itself and it is possible.  Asserting that a chunk of mentally ill people are too sick to get well is not a good enough solution anymore.

Scientific Research On The Causes Of Schizophrenia Is Inconclusive

Today I was studying some of the more recent research at Schizophrenia.com about the causes of schizophrenia, but none of it, it turns out, is conclusive.  Researchers tend now to see the illness from a biological and "environmental" perspective.  Environmental means there are both psychological and social factors.  The writer of the research article went on to offer many possible reasons for the development of schizophrenia from inherited defective genes to emotional neglect in childhood to illicit drug use to lack of vitamin D during pregnancy to growing up in the city to a common parasite gotten from handling cat feces to being born in the winter months, etcetera.  In short, no one knows for sure.  One thing that does seem somewhat clear, aside from having a history of mental illness in one's family, is that stress factors into it.  Stress can trigger changes in the brain.  Also, you may have the gene for schizophrenia, but if there are no environmental factors triggering it, it remains dormant.  A gene has to be turned on in order for illness to manifest itself.

Those of us who developed schizophrenia most likely had not only a genetic predisposition, but multiple psychological and social factors as well.  Children and youths are said to be five to ten times more sensitive generally than adults, which is why the formative years are so crucial to anyone's development.  I wonder how many of us with the illness suffered from some sort of abuse when we were young.  In my case, I believe I suffered from some emotional neglect from my parents, ironically because they were so focused on my older brother who from a young age had "emotional problems".  My brother in turn argued that it was my parents who had the emotional problems and needed to go see a shrink more than he did.  (My mother and I did in fact visit with my brother's therapist on several occasions which was something my mother deeply resented.)  Personally, I think it is true that my parents, though very responsible financially and for covering our basic needs (particularly my mother), were not exactly parent material.  My father was emotionally distant and my mother critical, cool and resentful (again) of having to take care of two children without much help.  Her mother had told her early on that she would not be available to baby sit that often. I'm sure that hurt my mother and left her without a guiding resource to rely on.  Growing up, I resented my mother more than my emotionally absent father, because I was around her more.  It was only later after college, around the time I began hearing voices, that I began to sympathize with her as she graduated from taking care of her children to taking care of her mother and my father's mother as they began to age.  Now, of course, years after my brother and I left home and my grandmother's had died, she is a much happier person.  

Don't get me wrong, I love my parents.  I think they did the best they could, but I won't rule out the possibility that their behavior towards me when I was young contributed to me growing up dysfunctional.  Once the dysfunction had set in, I myself continued the trend by behaving badly too, but by then I was an adult or rather an adult child because they continued to take care of me.  The truth is there is no parenting manual and a lot of parents learn through trial and error...unless they fail to learn at all.  I know some people cringe at the idea that a mother (or any major caretaker) should be held responsible for their child's development of schizophrenia or any major psychological illness, but it seems as if there may be at least a touch of truth to that assertion.  It's not the whole truth because I believe genetics play a factor and are no one's fault.  Still, behavior affects biology, just as stress affects brain chemistry.  A human child is a wonderful, but delicate being and there needs to be a balance between physical care and mental/spiritual/emotional care.  Also, mothers (and fathers who step up to their parenting responsibilities) need a support system, friends and family, even a therapist and more and more these days, qualified daycare professionals.  Mothers in isolation are asking for trouble.

The area of schizophrenia that most practical scientists veer away from and ignore is the spiritual aspect of the illness, which of course necessarily intertwines with the psychological/social aspects.  It is not surprising to me that much about the illness is unknown because the very nature of spirit is that it goes beyond common knowledge and into the unknown.  I continue to assert that though biology probably sets the stage for schizophrenia, the voices themselves originate from someplace external to the individual.  Some call them spirits or angels or devils or, in my case, aliens.  Be they higher or lower powers because they are not tangible and visible, people assume that they don't exist.  And tangibly they don't exist, at least not in this dimension, but that doesn't mean that there isn't a link between us and them nonetheless.  It's more convenient to dismiss the idea and stick with scientific bias than to explore the other possibilities, however distant.  I've interacted with my voices for a long time and it has been my assumption that they don't want to be revealed to the public for whatever reasons.  And yet they do choose to reveal themselves at least in part to the mentally ill.  That's a safeguard for them because the mentally ill have in the past and now not been taken seriously, though I believe that is changing the more the mentally ill, such as myself, speak up.

The question remains in my mind why these spirits/beings either create mental illness in individuals or take advantage of genetic/psychological/social tendencies towards the illness.  It seems to come back to the miracle of biology, of life.  I don't believe in human telepathy, but I do believe in alien telepathy.  It's the stuff of science fiction I know, but once so was the idea of flying machines and computers.  Recall once it was common knowledge that the world was flat and the sun revolved around the earth.  It's the brave individual who can come forward to speak an unpopular truth.  And really, who would want to consider what I say if it means that another non human life form can get inside our minds?  That's a threatening thought for the most stable of persons.  It no longer threatens me because I have established a compassionate relationship with these beings and I believe they are trying in some very challenging ways to help this world.  God works in mysterious ways and so do these beings who I believe are guided by a higher power.  I believe the whole universe and all the life in it is ultimately being guided.  But for all my beliefs, I do not know what happens after death.  Somehow I think these beings do know, but are either forbidden or unable to reveal it.  I sit with the fact that I don't know and may never know, at least not in this lifetime.

Acceptance

I told a friend the other day that I was okay with where I was at these days.  Maybe it's just that Spring has sprung around here and I'm feeling the release from a long winter into a kind of hopefulness.  I'm not sure.  I still go in and out of depression and some anxiety.  Just the other day I slept the day and night away because of depression.  I have a low tolerance for any kind of stress.  I can just manage to deal with my minimal responsibilities, more than that and I feel pain.  And yet, for all that, I am able to value my life.  I have a lot to be grateful for:  a safe home with cats for company, a caring family, enough money to live month to month, basic physical health, several creative outlets.  I also count myself as my own best friend.  Apart from perfection, which none of us can attain, I like and love myself.  Talking into a tape recorder these last four or five years has only gone to reinforce my friendship with myself.  My code of ethics is the discipline of self-honesty and honesty towards others.  I don't always succeed in that, but I do try.  And though I like and love myself, I still fall into thinking negative thoughts about myself.  I worry.

I work a program to help myself continue to heal from my own mental illness.  It's not a typical recovery program.  I have no support group.  I do not do volunteer work or part-time work.  Except for in this blog, I am not a mental health advocate.  I don't go to church each week and get involved with my local community.  And yet, I am in recovery and am doing fairly well.  Why am I okay?  Having financial support is a big reason why I think I am okay.  I know that may not last forever, but for now I am grateful for the space and time it allows me to work through watching over my illness.  Because I have had success combatting my illness due to financial support, I strongly believe that the mentally ill in this country should have the financial support they need.  Guilt free.  The general population has little idea how incredibly horrible the acute stages of psychotic illnesses are, lasting for not months, but years.  I used to say that it was like being mentally crucified.  That sounds so exaggerated, but it really isn't.  If you manage to survive the acute stage and get into the recovery stage, what kind of recompense can you be given for psychological torture lasting so long?  But aside from the idea of recompense for extreme suffering, there is the idea that spending some money is way more cost-efficient than having the mentally ill in hospitals, jails and rehabs or just plain homeless.  We can't afford to keep putting "undesirable" people away somewhere.  So a home, medications, therapy and some means of transportation are all basic needs that must be met for those unfortunate enough to have a severe mental illness.

Other than having my basic needs covered, I pay attention to myself and my voices and, as far as I am able, I reach out and care about a few people.  The computer has been a godsend for me because it has allowed me to meet other people in similar situations, all of whom really impress me with their intelligence, determination to recover and creativity.  Almost all of them are bloggers and many of them are artistic.  Before I was diagnosed as having schizophrenia, I thought people just got crazy and stayed crazy, but this is not true at all.  I continue to submit that psychosis goes through stages from a prodromal stage that leads up to the acute stage, which varies in length from person to person, and several recovery stages.  Many people who aspire to recover or who are actively in recovery start blogs.  I think blogging is therapeutic and informative.  It can boost self-esteem while forming a support network.  It's a positive creative outlet.  For some it is a means of doing advocacy work.  Some people blog daily or every other day, when so motivated, others, like myself just several times a month.  You can go at your own pace.  Life before the advent of the personal computer was very circumscribed for the majority of schizophrenia sufferers.  Especially those living far from active city centers.  The people I've met through blogging or mental health forums have helped me to recover.  I am indebted to them, which is why I continue to blog.  I have the hope that I am helping a few people along their way through mental illness.

My attitude about mental illness is that it is a journey rather than a life sentence.  I work with my voices.  They are no longer the enemy that they once were.  Through Buddhism I have come to see how to use my illness as part of my spiritual path.  I'm grateful to the voices.  They continue here and there to challenge me, sometimes calling me evil, but I feel so far away from being evil.  When I was acutely ill it was as if I were inside an evil world, but now, no longer.  I am free.  More often these mysterious voices tell me that they like and love me and I am comforted.  Perhaps my attitude of working with the voices through active compassion is not the usual perspective, but it is another strong reason why I am in recovery.  From the beginning the voices have been a mixture of good and "evil" with the good trying to help me survive the onslaught of the bad voices.  I have had friends with the illness tell me that some of the people they know have just horrible, tormenting voices that they have to detach from and that's the general view that voices are just plain bad.  I have real trouble believing this.  Even in hateful voices there is something to appreciate such as intelligence, creativity, determination.  Yes, those, too, are woven into the voices.  Even in the midst of hell there can be respite, some kind of humor, detached perspective.  Another point is that during the acute stage things are just that, acute.  The whole situation is perilous and yet you still have to find your way out of it even on your hands and knees, that, or die.  My acute stage lasted for 3 and a half years, possibly because I didn't commit to taking the anti-psychotic medications.  I was fortunate in that early on I was applying compassion to my voices even through my three psychotic breakdowns.  And if some voice did me a good turn, I remembered it.  For a long time into early recovery I was resentful of the voices.  My attitude was "why me?" Gradually as I turned towards Buddhism, the resentment faded.  Now I am no longer resentful which has brought me a lot of peace.

I keep hoping that some sufferer will take me seriously about applying compassion to the voices.  And compassion is part of every religion out there and part of humanitarianism itself.  It's hard to do when you're under attack, but it can be done.  Also, it takes time and repeated effort.  Recovery goes in stages too.  For me, it has taken years to get to this point, over a decade.  I think the more resistant an individual is the longer it takes, but as water over time smooths the roughest stone, so does compassion reduce the general suffering.  When I talk about compassion, I always mean it to include compassion for oneself as well.  Self-acceptance and friendship is really a must.  Most voices during their abusive phase, try to tear the individual down and that is why you have to build yourself up, not by being an egotist, but by loving and caring for yourself.  It is the individuals who internalize the voices negativity that get caught in self-destructive cycles.  Resist that negativity and eventually you liberate yourself and possibly the voices as well.

The Mind-Body Connection

Thank you Karen, for your thoughtful response to my last blog post.  I can definitely understand how you could feel angry at your schizophrenic friend for committing suicide.  Just about all of the people I've encountered online who have mental illness strike me as extraordinary and not freaks of nature.  If anyone one of them were to kill themselves, I would be very upset because it would seem to be such a waste of rich, human potential.  But, as you pointed out, it does take guts, strength and courage to survive and during our weaker moments sometimes we just give in and give up.  My ex-boyfriend committed suicide in 1999 when I was still quite psychotic.  My reaction then was shock and numbness.  I knew he was overwhelmed by his circumstances (paraplegia and dual addictions) and so, for him, I wasn't angry, just very sad.  I tried to put myself in his place and I realized that I, too, might have considered suicide.

You also wrote about how devastating family influence can be on those who suffer from serious mental illness.  I hear that and know that there's truth to it, though it can also work both ways depending on the family and the extent of a person's illness.  Some family members may be ignorant yet not abusive and generally well-meaning.  I've been very fortunate in that my family has been that way.  They provided me with a home and transportation and access to a therapist on a weekly basis.  I went insane mostly on my own private turf alone.  That was a blessing because I didn't pull them into my illness, but also difficult because I lived in such isolation.  I've since almost come to terms with my isolation because I know I impose it upon myself in order to reduce stress in my life.  People can be wonderful, can be stress reducers, but they can also create situations of daily stress.  So you're right, I don't have to live up to other people's standards of what should be my normal behavior; instead, I decide for myself on a day to day basis.  I also in turn give up most face to face friendships, have no support from a mental health support group and no place in my local community.  Because I have the financial support of my family, I have made the choice to be a recluse.  I know full well that many people don't have this ability, they live with their families and therefore the family dynamics come into play each day, each night.

When I compare the negative thought processes of mental illness to an addiction, I know I'm perhaps jumping to a conclusion, but, to me, it makes a fair amount of sense.  I look at my journals from when I was very psychotic and my delusional thoughts are as pervasive as an addictive substance.  I keep repeating the same pattern of thought over and over again and remained stuck inside something I almost wasn't willing to let go of.  I had an obsessive need to re-confirm my delusion each day and didn't leave room for other, healthier perspectives.  It wasn't my brain that was failing me so much as my own unshakeable attitude.  You wrote that the anti-psychotic medications make you less suicidal and I believe that; they make me less delusional and paranoid, but the drugs alone are not enough to get through this life.  You have to work a program inside your head, which includes monitoring what your thoughts are telling you and how it makes you feel.  I do that when I talk into a tape recorder each day and then listen back to it.  Or when I write in a journal and then re-read it.  I do the same thing when I write a blog entry or send an email to a friend.  Most often, when things go wrong for me, it's not outer circumstance and people, but my own mistaken assumptions and attitudes.  This is very good news because it places the power to change negative circumstances in my grasp.

There's a Tibetan Lojong slogan that goes, "Drive all blame into the one."  The one means into yourself. This is not an instruction to be a masochist, it's an instruction to realize just how much self-centeredness figures into negative circumstances.  When you take on the responsibility of truly taking care of yourself, you realize that no-one has the ability to make you unhappy but yourself.  To send the blame outwards is to give up control over your life.  In my last blog I was being critical of the media, but really, if I am aware, it is up to me how I respond to the media, just as it was up to your friend who committed suicide how he responded to his family's shame.  One problem is that we don't respond, we react and there's a big difference.  A response is measured and thought out and civil, a reaction is unmeasured, thoughtless and often angry.  My brother has called my mother a "reactionary liberal" meaning she doesn't stop for a moment to consider the other right leaning perspective, instead she gets indignant and the problem remains a problem.  We all have a tendency to do this, but it is a tendency that can be arrested.  In meditation that tendency is called practice and practice involves returning to the breath when you get caught up in self-centered thinking.  You learn to let go of the reaction and allow room for the response.  In addictive thinking my reaction to seeing someone smoking a cigarette is to want to smoke one myself, but if I interrupt that reaction and respond to myself with compassion, I can let the craving go.  If I apply the balm, the wound begins to heal.  The hard part is becoming aware of what it is you do, where the traps and triggers are and how to avoid them or override them.  The next hard part is just not engaging in the addictive activity.  Both are very hard to do, but it can be done, that's the main thing.  It is not impossible or someone else's fault or responsibility.  That's the thing about addiction, it's self-contained.  It really has very little to do with other people.

I place psychosis and addiction in the same general category because they are both about physical illness and mental illness combined.  Maybe the physical illness came first, but maybe not.  Addicts talk about having an addictive personality, but lots of people who would not be called addicts have addictive personalities.  We learn through repetition both positive behaviors and negative behaviors.  It is fair to say that someone with an addictive personality will become an addict of one sort or another if he or she engages in risky actions.  The mental illness precedes the physical illness (though not the genetic predisposition).  And honestly, I wonder about that in terms of psychosis.  Is it possible that our thought patterns could actually create physical imbalances/illnesses making a cycle, so that even if you took the anti-psychotic medications your thoughts could be working against your recovery?  We too often overlook the mind/body connection.

My purpose in bringing all this up is because I care; I don't want to lose anymore people to suicide when I feel and believe that they can overcome some of their negative circumstances through working with the very mind that seems to be betraying them.  There's a saying that goes, "Happiness is an inside job."  Well mental health is an inside job, but no one outside of you is watching over what you do except yourself, which means you've got to be very honest with yourself and keep monitoring your thoughts and feelings.  I will never say that it is easy.  It is not easy.  But it's worth it.

On Suicidal Thoughts

Several of my friends suffer from bouts of suicidal ideation despite taking medications for depression and/or psychosis.  After my last psychotic break close to 10 years ago, I, too, fell into suicidal depression while taking greater and greater doses of my anti-psychotic medication.  I spent a lot of time considering and imagining how I could end my life.  Ultimately, I settled on death by carbon monoxide poisoning in my garage.  Obviously, I didn't do it, but for a while I really wanted to.  From what I can remember, thinking about the ways I could kill myself became like an addictive narcotic.  It was oddly soothing to get serious about once and for all ending my suffering.  Instead of doing that I just held on through the following months of this.  My depression after my last break was so strong that I couldn't do much of anything.  I wound up forcing myself to go to a good local library so that I could check out a bunch of audiobooks to listen to and that's how I spent hours of my time, passively listening to story after story.  It made me realize that there was a larger world outside my sad corner of it.  It made me realize that other people were also struggling, yet living to tell their stories in a therapeutic way.

Suicide is the leading cause of death amongst schizophrenia sufferers covering about 10 percent or more of all deaths.  It's a massive problem, one that I think could be partially remedied through the reduction of the stigma attached to the illness.  The people I know attack themselves for not being "normal"; their self-esteem is always shaky.  There is a before/after scenario going on in their heads.  Before the illness struck them they were still a part of the human race, but afterwards they see themselves as defective, lacking in basic human resources such as the resilience to take on the responsibility of having a family, a job and a place in their community.  Even if they do have a family and/or a job and/or a place in their community, they are acutely aware that they have these things but at a greater cost than the general population.  They tire more easily and suffer from stresses that "normal" people would shrug off.  Their ability to get things done and to stay organized is challenged.  They fall into regularly comparing themselves to others, especially extremely successful people.  These comparisons in particular I think are the culprit that spurs on suicidal ideation and underlying these comparisons is this pervasive sense of isolation even when in the midst of people.

Is life easy?  No, it is not and that goes for all of us.  Yes some people are on the top of the Wheel of Fortune, but they can't stay there.  The illusion that there are people out there who are deliriously happy all the time is something that is taken for granted.  The media gorge on showing the success of popular figures who never seem to age and who stay forever bright, talented and wealthy.  Of course they also gorge on the crashing failures ad nauseam, and yet people continue to believe that some people are statically successful.  They are not.  They eat, shit, puke, age, worry and die just like the rest of us.  This is a very important point.  We ALL suffer.  No one is exempt.  To stay stuck in the comparison game, which is also more addiction, is to live in a delusion.  Easily said, but how do you stop comparing?  When you live among people, it is very difficult for even "normal" people to abstain from comparing their lot to someone else's.  Television brought the rich world into poor living rooms years ago and that continues with films and computers.  That is the lay of this land, there are those who have and those who have not.  But again, it's an illusion.  People who have also get struck by calamity, just as people who have not escape from calamity.  It's the luck of the draw.

So how do the handicapped who feel their disability every day fight off thoughts/feelings of suicide?  How do you get someone who wants to die to be willing to fight to live?  There's no easy answer, but I think it is very healthy to talk/write about these thoughts and feelings to other people.  That's a healthier response than shutting down and closing people out of your life.  It's also less shame based and it gives other people the opportunity to share their own stories of struggles.  For myself, believing in a higher power helped me to stay alive, though I know there are those who do not believe, but for them as well, there must be a belief in something greater than yourself, a cause or organization of people.  Belief in something greater puts your place in a better perspective.  You are not a god or demi-god with the weight of the world on your shoulders, you are instead a small but essential part of the whole.  Believing in a higher power is especially motivating because it involves the unknown potential in all things.  To suspend disbelief is to open to the world around you.  For me suspending disbelief means believing in the Buddha Nature of all living things, a belief in our essential goodness.  Belief in that one thing takes a great burden off of me.  I don't have to shame myself or others.  What I do have to do is understand myself and others to the best of my ability, understand and then communicate honestly.

Besides communicating with others and having a belief in something greater than yourself, you have to work on years of conditioning, the conditioning of seeing the glass as half empty instead of half full, years of negative thinking or what 12 steppers would call "Stinking Thinking".  And again, the addiction model I keep bringing up hooks in with the phenomenon of suicidal ideation.  In fact, suicidal ideation IS stinking thinking.  If you can become aware of your thought pattern while honestly acknowledging that it is unhealthy, you then have a choice in front of you.  Glass half empty or half full?  Do you stay with the negative thoughts which invariably wind you up back in thoughts of self-destruction or do you take a look around you and break out of your tunnel vision?  It's the tunnel vision of addiction--you take the substance, or do the action, or obsess on the thought which will bring pain to you, but before the pain comes the pay-off, the pleasure and yes there is pleasure in negative action/thoughts.  Some would call it comfort.  The comfort of doing things the way you've always done them.  And then the pain comes and seems to justify all the negativity making it all by then a vicious cycle.  Still, think back...there was a moment when you were aware of your negative thoughts stirring, when you had a choice.  Well, that choice always returns as long as you let yourself become aware of what the hell it is you are doing.

I still have suicidal thoughts when I get depressed, but I don't take it into the fertile ground of my imagination.  I leave it be.  So it never gets into the planning stage.  The challenge for me now is to not only stay alive but to find my place here and that means sitting with my own discomfort.  It's a conundrum, a riddle--how to live in this sea of constant change, this dimension of pleasure and pain.  It's also a challenge for every one of us.  I do believe that Nirvana exists and it is right here, right now.  Change your attitude, change your life, that's essentially what Buddha did when he woke up.