To Addicts Who Are Sitting On The Fence

"'Sitting on the fence' is a common idiom used in English to describe one's neutrality or hesitance to choose between two sides in an argument or a competition, or inability to decide due to lack of courage."   Wikipedia

Something that struck me years ago is that addicts can approach recovery attitudes and behaviors while they are still using.  You can sit on the fence and still read support books, listen to audio recordings, watch YouTube videos, listen in on telephone meetings, go to face to face meetings, begin or continue a practice of prayer, practice honesty especially with yourself, write in a journal.  You are then at least considering the other side and continuing to learn on a daily basis.  It's a way of acknowledging that you have a serious problem, a way to re-learn how to love yourself.  I say re-learn because I don't think we start out as infants and small children hating ourselves.  We are taught self hatred young by others who don't love themselves and this self attack, the internal critic, leads us down paths that often touch addiction.  I believe that there is such a thing as an addictive thought pattern and what runs throughout the core of the pattern is negativity.  Self-blame and judgment and blaming and judging others creates a vicious cycle.

I think it's wrong to tell addicts that they have to stop using before they can get into recovery.  That's like saying that because they use, there is something wrong with them that they have to fix before they can be included.  There is nothing wrong with using addicts.  That's back to a shame based mentality which keeps them stuck in the cycle of addiction.  They are sick human brothers and sisters who deserve help, not judgment.  Who they are inside is excellent, but they need the support and they need to train themselves to care for themselves.

Perhaps there could be separate meetings for people who are still using to go to, maybe meetings in people's homes.  Those who are in a firm recovery could be speakers for those groups.  It might be a gentler way to reach using addicts and lead them into abstinence so they can move on to go to all the other meetings that are available where they can practice recovery behaviors in earnest and be surrounded by others who are doing the same.  It just seems to me that fewer people would have to hit bottom (and possible not survive it) if there were transitional meetings for people who are not yet willing to go into withdrawal.  We are still too puritanical.  We still judge addicts as weak and immoral when they are actually strong and sick at the same time.  How can we teach using addicts about compassion for themselves and others when we won't practice compassion ourselves?

Choices For Health Or Sickness

I just listened to the Sex & Love Addicts Anonymous' Inspiration Line (215-574-2120) and someone named Steve talked for about five minutes about the freedom to choose either a return to an addictive lifestyle or to going into recovery.  He chose recovery because he knew that if he didn't he would quite possibly die.  In choosing recovery he had to go through a three month withdrawal period of severe depression.  Gradually he chose to get up in the mornings, eat, brush his teeth, get some rest and get on with life.   The choice for him and many of us was the choice between destructive pain and healing pain.  Healing pain ends after a time.  Destructive pain does not, but rather spirals downward.

I have made many choices in my life, as we all have.  The nature of life is about choices.  The two major categories of choices are the choice to follow health or the choice to follow sickness.  It is the same with our attitudes; we can choose to remain positive or to remain negative.  Over twenty years ago, when I was in a love addicted relationship, I started out following sickness.  I lived in denial and in the delusion that I was "in love."  Over time my delusion about being in love faded and I knew I was caught inside a terrible sickness with my partner.  In desperation I called a couple of domestic violence hotlines when I was alone and eventually made it to an Al-Anon meeting.  I bought the daily readers and began to read them as well as other books on addiction and toxic relationships.  I began to believe that there was still a benevolent force in my life, a Higher Power that I could turn to for guidance and comfort.  I began to pray to be released from a relationship that was spiraling downwards and stifling my spirit and soul.

One day, when I had the opportunity, I left my partner staying with my parents for a couple of months.  I chose myself over my addicted partner.  After having been abused for over five years I was raw and I was angry.  My anger helped me to commit to myself and my parents helped me to work through my process in a safe place.  When I returned home after my partner had left my house, I was still raw, but I was also self protective.  I wrote in a journal.  I got a guitar and began writing and singing songs.  I also made the mistake of remaining isolated.  I didn't reach out to others in recovery from addiction and so I stayed in partial sickness.

Three years later I would enter into a psychotic state.  Choosing myself over my partner had not been enough.  I needed therapy and support groups.  Soon after I became psychotic I was guided by some of the voices in my mind to find a therapist quickly and once again join Al-Anon and another group for domestic violence victims.  For the most part I have continued with therapy till this day.  Me going to support groups has been more uneven because of my perhaps addiction to isolation and doing it on my own.  My choice now is to commit both to therapy and support groups along with taking my medications daily.  It's been a long time coming.  Recently I found out that there are two new Al-Anon meetings in a town close by which is a godsend for me because I need these meetings badly particularly to stay in contact and connection with the people who go to the meetings and want to go more deeply into recovery.

I do believe in the twelve step program for myself.  I do follow.  I am choosing health over sickness day by day.  People have said the program is simple but not easy.  I agree.  It requires rigorous honesty all the time along with self reflection and meditation.  It requires pushing beyond unhealthy comfort zones.  It requires reaching out to others for help as well as helping others.  Each day there is a fresh choice, but I have been conditioning myself to consistently choose health over sickness.  That is how I turn my will and my life over to the care of God.

Update On My Progress

It's a moody gray day today, not too hot and a fair amount of rain.  I heard there might be a couple of tornadoes touching down somewhere in this state.  No thunder and lightning here.  Very quiet and peaceful.  I began my day as I usually do, taking my daytime medications, sending out a prayer for guidance for the day from the mysterious Higher Power, asking for help with what I need help with this day, reading from several daily readers and eating some breakfast.  A few hours later I visited a friend who is also following the way of life suggested by the Twelve Steps.

Last year she was my temporary sponsor for a few months before I went into my breakdown in the Fall.  I awkwardly got through most of the first five Steps.  The Fifth Step is where you tell your life story to someone you trust revealing very honestly what both your strengths and your weaknesses were during your lifetime.  The Fourth Step is where you find out exactly what your strengths and weaknesses were and are by doing a "moral inventory."  All this work is possible after you've done the first three Steps:  admit that you are powerless over your addiction, come to believe in some Higher Power and commit to staying open to the guidance of that Higher Power in your day to day existence.

About fourteen months ago I returned to a Twelve Step meeting after a long absence and committed to going to it for six months.  I had wanted to go to an Al-Anon meeting but I couldn't find any close enough to me and this AA meeting was right in my town.  So each Friday when each person would introduce themselves or reacquaint themselves with everyone there that night, I would say -- "Hello, I'm Kate, a codependent addict in recovery."  Sometimes I would say a codependent/love addict in recovery which was a truer description of me, for what else could I be, a person who had put her life in danger to stay in a very addicted relationship with another addict?

I picked up on labeling myself a "love addict" sometime in the last couple of years.  I found a group called Sex & Love Addicts Anonymous and I bought their primary text and read some of it.  I learned of a word they use in the meetings that I strongly identified with: anorexic, not about food, but about sex, emotions and social activity.  There are people like me who have been hurt and who have not been in a romantic relationship for decades.  Not only not in a relationship, but also very reclusive.  Here are eight questions that I answered yes to in an SLAA pamphlet:

Do you choose unavailable people to have affairs/relationships with?
Have you noticed that you stay in a relationship which you know is not good for you?
Do you notice that you are mostly alone?
Do you prefer to masturbate rather than have sex?
Do you yearn to achieve some dream or career but find that somehow you never quite seem ready to pursue it?
Do you seem to have acquaintances rather than close friendships?
Are you always 'busy' doing something (usually alone)?
Do you have an obvious history of being alone and not in a significant relationship?

The first daily reader I read each day is called Answers in the Heart: Daily Meditations for Men and Women Recovering from Sex Addiction.  It's a book that has a lot of wisdom in it not only for sex addicts, but for love addicts and I get guidance and comfort from reading it aloud to myself.  I've also bought audio recordings of SLAA meetings and some of them are really great.  I have a lot of respect for the men and women committing to their recovery programs and speaking openly about what they've learned from their experiences.  There's also a phone number you can call called "The Inspiration Line" (215-574-2120) where every couple of days there's a new message from a sex and love addict in recovery that lasts 3-5 minutes and gives you the option to leave a message in return.  I've called that number three or four times and left a message once.  It's a great idea and helped me.

I found by searching online that there are three SLAA meetings about an hour and a half away from me.  I've set a short term goal to go to one of those meetings by the end of this month.  If I can get the courage up to walk into the meeting room and stay there for an hour and a half, I would be quite proud of myself.  I did find an Al-Anon meeting forty minutes away that I've been going to once a week for the last two weeks.  First challenge: go to meetings each week and get phone numbers/email addresses.  Second challenge:  use the phone and reach out to members of the group.  Third challenge:  Ask someone to be my sponsor.

I might seek out two sponsors, one for Al-Anon and one for SLAA.  At SLAA I would have to choose a woman who also suffers from sexual/emotional/social anorexia and has at least a year of sobriety.  There is a woman in the Al-Anon group who seems very wise.  I did get her number and asked her if I could call this week.  Tomorrow I've committed to giving her a call.  It sounds so simple, giving someone a call, but for me it is hard.  Like many addicts I have trouble reaching for help and trouble with taking on responsibility for helping both myself and others in recovery.  I think I'm ready now.

People are teachers if you let them and now I want to let them teach me.  It means taking a humble position without losing my integrity.  It means really listening and respecting another's life experiences.  It means offering support in return.  It means learning about how to be in a mature relationship with another human being.  I want that.  After my recent breakdown when I cut off contact with people, I was relieved initially to be alone again.  I still felt a strong connection to the Higher Power and despite the psychosis, still felt a lot of happiness compared to the horror of my first breakdowns.  I remember saying that I didn't need anyone; all I needed was the Higher Power.  For a time, while I healed, that was true.  It is not true anymore.

So, like a child, I have to learn to walk in the company of others and love them and myself.  The irony is that I really respond to people.  I see right away what's good about them and love to appreciate that goodness.  The problem has not been so much with the people in my life, which has not been a lot of people, but with myself.  That is a relief because while I can't change others, I can change myself.  This awareness gives meaning to my life.

Seeking & Giving Help

In the last two weeks I've been to two NAMI mental health support group meetings.  The group is small so far, just five people each time, including myself.  I'm coming in contact with my desire to show up and be of some help to the group members and also in contact with my own vulnerability and limitations.  At home I get so into expressing myself through keeping an audio journal, a written journal, blogging, making up songs and sometimes doing artwork that I've felt as if maybe I could teach some of what I've learned to others.  But going to this meeting is teaching me that I have a lot to learn from other people.

The first step is just listening with an open heart, being present while others speak with courage and share their stories.  I did this and found that some of the people in the group were struggling not only with mental disabilities, but physical disabilities, problems with housing, with finding paid work and taking care of a small child amongst other things.  I realized that though my problems with mental illness were certainly valid that I did not have as much of a burden as some of these people.  This made me feel very respectful towards the individuals in this group and towards the group as a whole.

I also felt some feelings of helplessness and a wish to come up with answers to try and "fix" their problems, but I saw that for many of their issues I didn't have the knowledge or the experience and I had to be quiet and let others offer their guidance and ideas.  But when it came to coping with mental illness, I did find that I could contribute to the group.  There was something very special for me about listening and talking and looking into the eyes of the people sitting at that conference table, something that I've been withdrawn from in my self-imposed isolation all these years.  It's been a long time since I've been to any kind of support group and now I see what I've been missing -- personal contact.

Yes, there's also a sense of vulnerability and personal limitations, but that is good, too; it keeps me in contact with a sense of humility and a wish to keep trying.  I think many people don't go to meetings because of that vulnerable quality, but in sharing your vulnerability and recognizing that we are all vulnerable, all in the same boat, there is a kind of liberation.  I'm not saying that going to a support group a couple of times is going to solve all your problems.  It won't, but, with a good attitude, it can help a lot.  Not only do you get the chance to learn from others' mistakes and successes, but you get to share your own.

Sharing in itself gives personal validation and possibly helping others raises the quality of your life.  Unless people come together either virtually online or in person in a group, the opportunity for solutions even little (or big) miracles gets lost.  People can and do change the world for the better despite those stuck in the cycle of blame and violence, but they have to get organized and come together little by little.

My goal for now is to commit to showing up once a week and to think about the people in the group and what I can do to help during the time in between meetings.  Helping also includes being honest about my own problems and open to asking for help from the group.  One of the reasons why I stayed locked into my illness for years was that I wanted to deal with my problems on my own.  I didn't want to bother anyone.  I found out the hard way that I had to ask for help, but I stubbornly resisted that; even now I am awkward about it.  When I did reach out, I found people who were willing to help me. In a sense, being vulnerable before people gave them permission to be vulnerable, too, and when we admit to our problems, we generate goodwill.  That goodwill keeps us afloat during the painful times and give us reason to rejoice during pleasant times.   Conversely, stubbornly refusing help and holding onto, even nurturing, our resentments just makes us internalize our own ill will and keeps us sick and miserable.

My voices did torment me in the beginning, but for a good reason.  They said that I had to be around people and help them even though what I really wanted to do was to crawl into a hole and possibly die.  They hurt me, but in some ways I asked for it.  Before the psychosis took hold of me I was mainly interested in myself and not oriented towards helping others.  As was my way, I pulled into myself, into self-gratification and fantasy.  I had been hurt badly, but I held only my resentment and it colored my world and led me more deeply into serious mental illness.

And that pattern of holding onto resentment repeated itself while I went through the early stages of my recovery and slowed down my progress.  I didn't regret the fact that I did help some people, but I continued to resent the voices' method of teaching me.  What began to change me inside out was the Buddhist practice of lovingkindness towards myself, the voices and the people I encountered.  That little shift in attitude that I cultivated on and off for years rescued me from my own self-centeredness.  It has taken a long time, but I'm in a much better place now and my attitude is good, is open and willing to keep trying to continue recovering and to helping others to do the same.

The Balancing Act Of Yin And Yang

We are like this seagull:  we can find balance or we can fall or we can even, symbolically, fly.  Balance allows us to land and settle and balance allows us to take off and fly.  The experience of falling also has balance in it, the balance of letting go and trusting despite the thrill or the fear of it.  To me this photograph is a good example of actual and potential balance, yin and yang in action.

In Chinese the literal meaning of the word yin is shadow and the literal meaning of the word yang is light.  The yin and yang symbol is often illustrated in black and white showing the greatest extremes co-joined in a balanced duality.  The symbol is perfectly contained yet implies movement.  It is supposed to represent the elements of nature, opposing yet not in opposition, rather interconnected.  Human beings are animals and evolved from nature and have literal and figurative elements of shadow and light in their make-up as does everything in our world.  This experience of contrasts is how we sense, and make sense of, ourselves and our environment.  We see the difference between sunlight and shadows or we feel the difference between the warmth from the sun and the coolness of the shadows.  These contrasts, and all the subtleties between them, make for the profound richness of our lives.

Duality, then, is an essential and intimate part of all our lives.  The yin and yang symbol, though it uses the visual language of extremes, really teaches about moderation, balance and the perfect compromise.  So why are humans often immoderate, unbalanced and in conflict?  The balance of yin and yang is perfection, heaven or "the pure lands", yet there is always flow and flux to it.  There are innumerable combinations which allow us to become unbalanced.  But is that lack of balance a lack of perfection?  Or is it the perfection of a process that moves towards a larger view, a broader picture?  We too often label the low points in our lives as bad and the high points as good when really they are both just different aspects of a fertile and fully experienced lifetime.

I don't mean to minimize the intensity that our suffering can reach, but suffering never is or has been the whole picture.  If it were, we would have no means of surviving and certainly none of being happy.  It is when we are seeing black, really imagining that all is hopeless and dark, that we can make the biggest fall of all into aggressive acts against ourselves and/or others.  But before the act comes the thoughts and feelings, the reactions to the real and imagined pain in our present moment.  Always there is the touch of light amidst a black background, but when we focus on the darkness and even add to the darkness, we blot out the one door out of our prison.  Controlled by our imagination we think there is no door to freedom, to the outside.  I'm convinced that the reality is that there is always a door available.

There is a Tibetan lojong slogan that goes, "Train in the three difficulties."  The first difficulty is to recognize mental illness as mental illness.  Pema Chodron uses the word neurosis, but I have found that it applies just as much to psychosis, depression and anxiety.  Recognition is intuitive awareness and awareness is the first major step towards beneficial change in yourself and towards others, which leads to the second difficulty which is to do something different after you recognize your illness.  Doing the usual thing, the habitual thoughtless thing, leads you to reinforce the original illness.  Instead of finding some liberation from sickness, you settle more deeply into it.  The only way to find the door, the access to light, is to take the blinders off your eyes.  That's doing something different.  The final difficulty is to make this your life's practice.

Actually, I think the first and second difficulty are one in the same.  The act of recognizing is an act of doing something different.  The question is how to you get to the point where you are ready to become aware?  I've been looking back on some of my adult life, reading a journal from the early years of my recovery, and I see now what I was unable to see then, that I was harboring, even cultivating, resentment towards these mysterious and challenging voices in my mind.  I was full of questions and I chased the questions wanting answers like a cat chasing its own tail.  Some of the questions were understandable, but others revealed my particular bias towards blaming them for my own ills.  Interspersed in the resentment was the germination of a compassion practice towards them and myself because we appeared to both be ill.  That practice was enough for me to see the touch of light in the midst of my persistent depression.

It's been almost eleven years since I entered into recovery.  The early years, when I was struggling to get my BFA degree, were not easy.  Now I can see that I made them harder.  I was self centered, self isolating and resentful, but I was also curious, thoughtful and basically non harming.  I did return again and again to the practice of gratitude and lovingkindness however imperfectly.  Anyway, it was enough to get me to this point where I'm more ready to be aware than I was before.  A lot more ready.  It's only been since I finished reading "Dharma In Hell" that I realized that I do have a daily Buddhist practice.  I practice lovingkindness towards myself, the voices and everyone, but I came to the practice gradually.  A little bit here and a little bit there while going in circles and falling backwards.  I believed strongly in that little ray of light and when I could I nurtured it.  None of it has gone to waste and life on the path continues.  I am just beginning to enter into compassion practice which is harder than lovingkindness practice in that I will have to feel the pain in myself, others and the situations we get ourselves into.

Next Tuesday, on September 11th, I will go to my first NAMI meeting in a nearby town.  This is very important to me and hopefully to the other people who attend.  It will give me the chance to be of service to a few of the people in my community.  Early in the acute stage of my psychosis, the voices ordered me to be of benefit to my community and despite battling the delusions and my paranoia I did help a few people out.  Then I pulled back into myself and gradually I have started reaching out.  It took me years just to reach out to people online and then years of me wishing that there was a support group to go to.  The time has come.  I'll be nervous, but I will work to stay open to the opportunities that present themselves to me, opportunities to share my story and to listen and learn from other people's stories.  The flux and flow of yin interacting with yang has brought me to this place, a place where I can finally open the door.

A Visit From My Elderly Parents

My parents arrived at the Rochester NY airport 6 hours late due to bad weather at JFK in New York City.  The stress of traveling is hard on anyone, but especially on people who are in the 80s and so my parents were exhausted.  Of course, by the time they arrived it was nighttime and I had to drive them and my brother the hour and a half home back to our little college town.  I'm no longer very comfortable driving at night, but it had to be done and I did it.  We arrived at my parents hotel after midnight.  I left the Apple iPad with them and told them I would be over the following morning to give them some instructions on how to use it after they had had their breakfast.

I had done a lot of work beforehand scheduling daily activities for the week ahead.  I had also spent a lot of time learning to use the iPad because I really wanted my parents to get the most out of that device considering their home computer was practically defunct.  When I arrived at their room later that morning I was somewhat nervous about teaching them and curious about what their reactions would be.  I had planned to try and teach them for an hour and a half each morning and let them explore it on their own each evening.  My mother responded positively to the iPad, but my father was rather intimidated by all the information I was giving him about it.  He kept asking me how I managed to learn to use it and I kept telling him that I had had a month to learn it and that I learned it by exploring it, by making mistakes and trying again.  I told him that this is what he and my mother would have to do, too.

As the week progressed I saw that they were having trouble with the most basic things such as turning it on and off, adjusting the volume (my mother is hard of hearing) and charging it.  One thing I did try a couple of times was using something called FaceTime which is the Apple equivalent to Skype or video conferencing.  The FaceTime application came with their iPad and I downloaded the App to my Apple laptop.  Personally I found it very easy to use, but my parents struggled a bit.  They had to learn how to stand the iPad up in order to see the screen and to adjust the volume so that it was all the way up so that my mother could hear me.  Once we got it working, my mother was very pleased with it.  She does not really like using the telephone.  She likes to be able to see the person she's talking to and this program allowed her to do just that.  I told her that this would be great to use in the coming months instead of using the phone.  The only glitch in the whole thing is that the program takes WiFi and they do not have a WiFi hotspot in their apartment at home.  There are some WiFi hotspots in the elevator hallways and in the library at their retirement community, so they would have to bring the iPad there in order to make a connection with me until they got WiFi in their apartment.  I have my fingers crossed that they will go ahead and do that soon.

Otherwise, the week went quite well.  I took on most of the responsibility for taking care of my parents shielding my brother from some of the stress of it.  But I found that the stress was not so bad for me.  I attributed some of that to lowering my medications.  About three weeks ago I saw my psychiatrist and asked him if I could begin to lower the antipsychotic drug Abilify that I was taking at the highest dose, 60 mg.  He said yes and told me to halve it by taking one 30 mg tablet instead of two.  I was surprised by his readiness to reduce the amount by so much so quickly, but I was willing to give it a try.  One of the main reasons why I wanted to reduce the Abilify was that I had been having a lot of trouble with anxiety for several years since I had been taking the drug.  I found out that anxiety was one of the side effects of it.  I've come to conclude that this was the case because in the last three weeks my anxiety level has nearly disappeared to the point where I stopped taking the anti-anxiety medication Buspirone that I was supposed to be taking three times a day.  I didn't like that drug either, though it did help a bit, because one of its side effects is blurry vision and I noticed that that was happening to me after I took it.

What I'm finding, through trial and error as is the case for most of us taking prescribed medications, is that a higher dose of medication is not necessarily the best to reduce symptoms.  It is very hard to judge accurately because biochemistry varies from person to person.  The scientists/doctors do not know exactly how the anti-psychotic and anti-depression medications work, just that for some people they do work.  This is unsettling and means that each of us has to fool around with the guidance of our psychiatrists, trying different drugs at different doses.  Sometimes drugs that have worked well at reducing symptoms for years suddenly become ineffective forcing those affected to try different drugs.  And it all takes time, sometimes months to get to the right dose or combination.  On top of that again there is no guarantee that that will work for years at a time.  I am relieved that I can lower the Abilify, which has not only reduced anxiety but has reduced the frequency of the voices that I hear, because I was at the very highest dose with no leeway.

So at the lowered dose I was better able to handle the stress of going to the Grassroots music festival and of taking care of my parents while they visited.  This year has been one of the best years all around since I got so ill in the Spring of 1998.  I also attribute that to reconnecting with old friends online and to making a new in person friend (Sam) in my community.  For so many years I have lived in isolation, even before I became psychotic, and now I have rejoined the human race.  What a wonderful thing.  My circumstances have gone from truly desperate to very good, even joyful at times.  I am glad to be alive and glad to have the people I care about alive and well.

My parents had a good time.  We took about three road trips, one to a Subaru dealership in a suburb of Rochester.  My present car is about eleven years old and it is time to get a new one.  I found the car I wanted right away and will be getting it very soon.  I'm really looking forward to the peace of mind an all wheel drive car will give me during the hard winters we get here.  My mother said she was very happy and relieved that I would be getting this car because sometimes she worries about me.  A couple of days after we looked at the car at the dealership, my present car would start but not stay started and I had to have it towed to the shop I have gone to for several years.  Turns out there was nothing really wrong except there was water in the gas.  I didn't know this  but sometimes the gas you pump at the gas station has some water in it and causes this problem.  It's never happened to me before, but it firmed our resolve to go ahead and get the Subaru.

Because I wasn't exactly sure if my car was up to driving my parents to the airport, we asked our friend Richard to take us up.  Luckily it was a Sunday and he had the day off and could do it, so we all went up to Rochester.  We stopped off at a very good Thai restaurant and treated him to a good meal and gave him some extra cash for his trouble.  A couple of hours after I got home I got a call from my father saying that they were still at the airport because JFK was closed due again to bad weather.  I told him I would reserve a room for them at a nearby (within walking distance) hotel until they could leave the following day.  Normally I have a strong aversion to using phones; I get very anxious, but this whole trip I was able to use the phone to call my parents and make reservations.  I've been getting better and better about using phones especially since I started talking on the phone to my childhood friend Rita every week or so.  Thank you Rita!  Anyway, my parents did get back to their home in Florida the next day, thank goodness.

It was great to spend time with my parents.  Though they tire much more easily now, they looked great and I'm hoping they live in good health for a while longer.  My father has a rare, but treatable, form of leukemia.  Five years ago he went through chemotherapy.  The doctors said that he would have to be retreated in five years, so that what he did before he came to visit.  He responded to the treatment though he continues to bruise easily.  If all goes well and he survives, he will be treated again in five years.  Till then I'm hoping to stay in closer touch with both my parents using FaceTime once or twice a week.  That's another change for me because when I was sicker I was not good about keeping in touch, but since I started sharing my car with Sam, seeing her each week, I also started to call my parents faithfully on Wednesday evenings.

One last thing:  I found out last week that a couple who I met three years ago, who suffer from mental illness but are in a firm recovery, went through the NAMI (National Alliance On Mental Illness) training to start a mental health support group nearby.  It is scheduled to start hopefully in September.  I am excited about it and very grateful to them for having the stamina and dedication to do this for our community.  A month ago I was seriously considering yet again starting a support group in my town, but now I think I will dedicate myself to this new group.  Not only will I start to get the support I need, but I think I can do some good for others directly.  If after six months the group goes well and I learn the pattern and organization of a NAMI group, perhaps I will go through the training myself with someone I meet in the group and eventually start a group in my town.  We shall see.

Summertime Gratitude

I'm sitting at my dining room table with my now wireless laptop enjoying the breeze created by my three fans.  We finally got some rain today after having drought conditions for a while.  My friend Sam stayed over last night; we had our first drinking night together in several months.  We drank her favorite -- rum with cranberry juice and ice and we both got moderately drunk.  It was an excellent night.  We talked, listened to music, did a little musical jamming, me on her sweet acoustic guitar and her on her electric bass, and watched a movie by the director Mel Brooks called "Young Frankenstein" that came out in 1974 in black and white, a very funny movie.  Earlier that day I did a lot of house cleaning and cooked up some red beans and rice with chicken for our dinner.  I felt proud of myself and content with her.  Several years ago I wouldn't have been able to pull if off, but yesterday it was a piece of cake.  And so I feel as if I am really moving in the right direction in my life with my recovery.

It's taken a while to come to this place, a place that many people come to naturally, but I have to say that it's been worth the wait.  Now I have friends whereas before I really just had my brother.  I'm finding that having friends makes all the difference.  Sam in particular is a great friend because I can see her face to face and I get to hug her and talk to her directly.  She's gotten me to get outside for short walks and to sit in nature's glory especially at her place which has some lovely property complete with a large pond and a full food garden and a campfire spot.  She's said to me that ever since she was little she's felt more comfortable outside than inside.  But then she grew up out here in the beautiful countryside, whereas I was mostly in the City, except for my summer's at my parents' beach house on Long Island.  I think my summer's were particularly pleasant precisely because I lived in the City.  I had the best of both worlds back then.  Now I'm a confirmed country dweller and have been for over 20 years.  I'm used to looking out my window at the wildlife and greenery and flowers.  I'm used to the slow pace, the privacy and the beauty.  I feel very fortunate.

The last couple of months I put myself back on a diet and plan to continue with it as a lifestyle change in order to get back to a more normal weight.  Really my self-consciousness at being obese has stopped me from returning to NYC to visit with my old friends.  My therapist says that shouldn't stop me, but it does.  I don't mind that much my somewhat sagging neck and my gray hairs.  I have come to accept that I've made it past the middle age mark, but the weight I can't seem to accept.  As it stands I plan on seeing my friends next summer.  Lately I've been getting some new clothes to fit me for now.  They are comfortable and attractive and not very expensive either.  This is a big change for me.  Normally, I live in sweatpants and t-shirts.  I really didn't think it was possible to look good again, but then I didn't try very hard either.  Now because of the clothes and my improved ability to take care of my home and having some friends, I feel a part of the human race again.  It's a great feeling.

A really pleasant surprise happend to me a couple of days ago:  I got an email from my old friend Colette, a very warm and supportive email.  Turns out she's been busy, but right now she is vacationing with her family and she had enough time to write to me.  When I contacted her, she was just about to do her oral presentation to get her doctorate degree, well, she only just got confirmation that she passed her tests and she is now officially has her Phd.  I respect her for going so far in her education.  She's a real success story.  It means so much to me that she decided to get in touch with me.  I was afraid that I would never hear from her again, though I was planning on sending her an audio tape of me talking to her in the Fall, but now maybe I can do that for her (if she has a tape player) earlier.  I've successfully sent tapes to my two other old friends, Rita and Amy and gotten a few tapes from them as well.  Emails are great too, but to hear an old friend's voice and inflections is even better.  Plus now I have years of practice doing it for just myself.

I'm back to wanting to start a support group in my town.  I've been wanting to do this for about five years, made a couple of tentative approaches, but never pulled it off.  I wasn't quite ready to try to do this on my own, but maybe, just maybe, I can do this by the end of the summer.  I wrote a Support Group Proposal to give to my therapist and my psychiatrist, which I did last week.  I asked them if they'd be willing to back me up by letting me include their contact information on the proposal that I plan to give to the county clerk's office in town.  My therapist is willing, but my psychiatrist would prefer that I work with the counseling center in a nearby town.  He worries that some people in the acute stages of mental illness might act out and cause me a lot of grief, so he wants there to be more support.  I suggested asking to have the meeting at the court house which is right above the police station, that way I could call for help if I needed it.  My psychiatrist seemed to approve of that idea.  Honestly I think most people who choose to go to a support group meeting do not act out, but it is good to prepare for the possibility.

It still amazes me that there are no mental health support groups in this  county.  My psychiatrist hesitation appears to be part of the reason why:  the people in the local communities around here don't trust that mentally ill people getting together will behave properly.  Most of that is I think due to ignorance and some stigma, though there is always an element of truth there too.  It's hard to know where people are at in their illness or in the various stages of recovery from serious mental illnesses.  I've never been a group facilitator before, but I'm sure I can learn.  I just wish there was a good daily reader for mental health groups.  When I went to Al-Anon they had excellent readers which I relied on when I was in the acute stage of my illness; it wasn't quite appropriate, but it was better than nothing.  Having a daily reader gives a good focus to a group, a basis to start a discussion and to share personal experiences and offer support.  But before I can get to the stage of getting a group going, I have to convince the townspeople of the need for a local group.  This will take courage and persistence on my part and a willingness to share my story, to become more visible in my community.

Mostly I've kept a very low profile, though early on in my illness I did tell my brother, who is sometimes a bit of a barfly socializing with students and the locals, that he could tell people about me and my diagnosis.  I didn't want him, or myself for that matter, to be ashamed of my illness and I wanted my neighbors to know why I have been so reclusive all these years.  Also, for the most part, I have not acted out publicly or gotten in trouble with the police.  Basically, I pay my taxes, shop at some of the local stores and businesses and keep to myself and that seems good enough for most people around here.  Also people know my brother, who is a great talker, and that helps as well.

So, so far, this has been one of the better summers I've had around here.  Even the hot weather hasn't been bothering me much.  My brother and I go off to a 4 day music festival this Thursday and then 5 days after that my parents, who are both now in their mid 80s, will arrive and visit for 8 days.  I am really looking forward to giving them the iPad and teaching them how to use it.  Even my friend Richard has been helping me out by doing some small, but necessary, jobs around my house and then staying to have a glass or two of Sangria with me.  Before Sam left today, we both agreed that in a world where so many things could go wrong for everyone every day, that, for the most part, things work out.  Of course, there are low points in everyone's lives, but if you can endure through them, you can see that there is light at the end of the tunnel and then move out into it.

Lack Of Mental Health Services In Rural America

Approximately 70% of New York State is rural and I live in one of the poorest rural counties of the state.  I grew up in New York City where there is a plethora of services and resources for people who suffer from mental illnesses.  Unfortunately I left the big city and moved far out into the country to another world.  It was here in the country that I encountered the legacy of child abuse, addiction, domestic violence, homophobia and racism.  I don't mean to imply that these things don't exist in big cities, they certainly do, but in the country the sense of isolation and shame along with the extreme lack of resources create a much deeper and more resistant problem.  The key culprit is poverty and a lack of community organization.  Money provides incentives to overcome problems.  Without the money people have to rely on their own inner resources and in doing that they pull into themselves and away from the help they need.  On top of that the general poverty means lots of low income families, lack of employment opportunities, single parents, a lack of health insurance, a prevalence of alcohol and drug addiction among other things.

Life is hard, but it is harder in the country.  The ethic out here is rugged individualism and self-reliance, especially amongst farming communities.  Unfortunately, self-reliance is not all that is needed when it comes to mental health.  What is needed is community support and action.  In my county there is not one mental health support group for people with serious mental illness and there are only a small handful of psychiatrists and psychotherapists to cover several counties.  Most people don't have health insurance and rely on social services and the emergency room to help them get through crisis situations.    Even if one does have health insurance and the ability to pay for services, there are very few options.
I'm in the minority in that I have health insurance, though that insurance does not cover the cost of therapy.  My health insurance covers most of the cost of my visits to my psychiatrist every three months and the cost of my medications, but that's it, the bare minimum.  Because I am not eligible for social services I have no community support.

One in four adults in the US, over 57 million people, will have mental health problems in any given year.  One in seventeen will have major psychotic disorders.  A distinguishing feature of mental illness is a pervasive feeling of isolation from others.  This sense of isolation is multiplied in rural areas where there are fewer people living at greater distances from each other.  Without solid community support people get pulled again and again into cycles of mental illness, abuse and addiction.  The burden gets shifted onto the families themselves who are ill equipped to handle these problems alone.  There is some community support for addicts and their families mostly due to 12 step support groups, but only for those who are motivated to go to them.  The stigma of mental illness and addiction is greater in the country because small town life means people are into each others business.  The foundation of many support groups is anonymity, but in small towns there is no guarantee that you won't run into someone you know and this prevents many people from getting help.

The problem remains, mental illness is rampant in poor, rural communities.  Those who are court ordered to go to the minimal support groups and rehabs available, sometimes in place of going to prison, at least have some chance, but many people fall through the cracks in the system.  Social services are overburdened and community action virtually nonexistent.  What's needed are thriving community centers where various kinds of support groups can meet and take on some of the burden of caring for those who need help.  What's needed are community organizers.  Some mentally ill and/or addicted individuals have the strength to start support groups, but most do not.  Because of this there is a need for people who are not afflicted but are dedicated to helping those less fortunate to come forward and set up groups.  The few psychiatrists and therapists that are available are flooded with clients and have no time or energy to set up groups.  Those that remain who aren't suffering from mental illness are busy trying to make a living in an area where there is a lot of competition for even minimum wage jobs.

I think it's fair to say that there aren't many community organizers interested in moving to very poor, rural areas that have very few resources.  Truth is you probably can't make a living at it here, let alone raise a family of your own.  There's just not enough incentive.  Occasionally there is a charismatic, civic minded person willing to make a difference in the community, but even those people eventually burn out when others don't join in to take on some of the responsibility.  Maybe there could be people hired to act as a community organizers that temporarily come into a community and live there for a month or two while training volunteers to facilitate support groups.  I tend to harp of the importance of support groups because I don't have one, but I have seen from going to some 12 step groups that they are effective and low cost.  I do think that bringing small groups of people together can create not only an atmosphere of support, but some motivational magic to combat and lessen the grip of mental illnesses.

People with serious mental illness sometimes act out, but more often than not they pull into themselves, isolate themselves because they don't quite fit into society.  Support groups organized by confident, healthy individuals who have the training to pass on the rules and structure necessary to sustain a group could change the lives of many by teaching those with mental illness how to take better care of themselves and each other.  The people who commit to a support group find through their commitment that they can gradually take on more responsibility within the group.  Before that can happen there must be a catalyst to get the ball rolling.  When I was in early recovery I found one of the greatest obstacles to my happiness was a strong lack of motivation.  I needed someone else to appreciate me and encourage me to reach outside of myself.  I didn't find that in my community, except with my therapist. My main support all these years has been online on support forums and in this blog community.  That has helped a great deal, but it can't take the place of belonging to a local community, taking on more responsibility and directly helping those in need.

I've wanted to be that charismatic community organizer, but the pull to withdraw and avoid responsibility is part of my illness.  Like so many people in my community, I need the extra help to get things started.  But if we had that extra help in our rural communities, there's no telling how far we could go with it.

Parallels With My Anti-Psychiatry Peers

I have come upon the anti-psychiatry movement late.  I've only just started reading some blogs about it.  There's a lot of outcry about the perils of being medicated, some of which I certainly sympathize with, but what I was really looking for was a list of alternatives to taking the medications.  I just found one large site with lots and lots of information on it, it's called Beyond Meds: Alternatives to Psychiatry.  I've only read a bit of it, but plan to return and continue my research.  I was fascinated to find that I have been going on a parallel course because some of the alternatives that are suggested are Mindfulness, Meditation, Yoga and viewing one's illness as actually a psycho-spiritual journey.  On one of the sites that I stopped at they even were pushing books by Adyashanti!  I also read an article by a woman who suffered from Bi-Polar disorder who came to embrace Tibetan Buddhism and mind training, while working in a peer-run support group and not taking the medications.

In terms of spiritual orientation these anti-psychiatry people appear to by "my" people.  I certainly do accept them as such because we have been to the same hard places.  And I am all for exploring alternatives to the medications.  If people don't explore, they will never find ways to develop better treatments to complex psychotic illnesses.  And without exploration, there's not even the possibility of discovering a cure.  It seems more and more likely that community outreach programs and peer run support groups will be the wave of the future.  God, I hope so.  I know I was meant to be a part of a mental health support group.  The great thing about support groups is that everyone is welcome from the acutely ill to those in partial recovery to those in full recovery.  There's so much we can learn from one another, but we have to get into each other's hearts and minds and learn how to be there for each other.

I want to believe that following a spiritual path of being Mindful and training the mind to study itself without judgment could help to treat acute psychosis.  I want to believe the same for Cognitive Behavioral Therapy and peer run support groups and diet, nutrition and exercise programs, but I honestly don't know yet.  Maybe individualized combinations of treatments could really address the core symptoms enough to treat acute psychosis without medication or with medication at a very small dosage.  All I know is that people need to get organized and that's what the anti-psychiatry movement appears to be doing, working both in communities and online.  I know I need the help in my community;  medication and individual therapy have not been enough for me -- I need to meet peers face to face.  I've felt frustration about this for so long and disappointment in myself for not having the courage and stamina to start up a support group in my town.  I'm hoping this will change this year. I talk a good game about peer support because I got so much out of going to the Al-Anon group, but the group is just not appropriate from people with psychotic disorders.

And I do use the word "psychotic" and "disorders" as well as the word "schizophrenia" because I do see the phenomenon of psychosis as an expression of imbalance and illness, though I know it can be a means to personal growth; it can also lead to suicide.  As I wrote in my last post, it is the people in the thrall of acute psychosis who most concern me and that is why I still believe that medication should be an option at least for a period of time.  At the same time, I'm all for engaging individuals in various forms of treatment in addition to the medications.  Build a support network, and work on your own, too, while taking advantage of what the medications can do for you and then decide whether to continue with the medications or not.  The medications are imperfect; there's no doubt about that, but it's important to use as many options as you can, especially when you are suffering so much.

If I find that there are viable alternatives to medications, ones that really work to treat psychosis, I think I might consider reducing my medications, mainly because I'm on high doses and have been for 10 years and I don't know if that's good for me or not.  I'm still afraid of falling back into acute illness.  Most of my days have challenges in them.  I am not recovered, but I will continue to wave the flag of RECOVERY for any newcomers.  Recovery, in all its forms and gradations, is possible.  That's very important to realize.  No matter how bad it gets, and it can get pretty bad, you will not be stuck in a hellish place indefinitely, but you do need to motivate yourself to reach out to others, to share your story and to do what you need to do in order to take care of yourself.

The most important point I can make here is that we, who have suffered from psychotic disorders, are all peers regardless of whether we take the medications or try an alternative route.  We need to stand united or at least make bridges to meet each other across the sometimes great divide.  I deeply appreciate people on both sides, but really, we are the same with similar stuggles and successes.  Today I read a blog entry by Charles on his blog Mental Health Recovery and in it he writes about how you have to let go of blaming in order to recover and to "be positive in the face of negativity".  I think we've got to work to understand each other better and learn to be extremely tolerant of just those people who cause us to feel self-protective and defensive.  Check yourself out and see what you find.  I find the problem is usually within my own self and that I have a lot to learn from different people and points of view.

Why I Am Medication Compliant

There's been a lot of writing in this corner of the blogosphere about medication compliance versus the anti-psychiatry movement; I want to share my perspective on this.  First of all, we are all individuals with varying biochemistry and varying temperaments and what works for one person may or may not work for another.  There is no absolute right and absolute wrong here.  We each have to find our way through our mental illness and beyond into recovery and, as I've said before, there are over 10 percent of us who don't survive the acute stage or early recovery stage.  I don't know the percentages, but there are those of us who don't respond to the anti-psychotic medications or who have such bad side effects that it is nearly impossible to take them.  I venture to say that most of us fall into the category of being helped by the medications though not free of all symptoms.  And then there are the blessed minority who lose all their symptoms primarily due to taking the medications.  I am somewhere in the middle.  Most of my delusions and paranoia have gone, but I continue to have voices and bouts of depression and anxiety.  I have been taking the medications faithfully for a decade and in the interim I have gotten obese and to a lesser extent sexually dysfunctional.  I have told myself that since I am a middle aged woman living alone that these side effects are not too much to bear to have most of my sanity intact.  Being fat really does bother me and I still have hopes that I can reduce my weight.  I haven't completely given up.

But what if I were a young person?  Would it be worth it to put on tons of weight and become somewhat impotent?  It all depends on how ill one is.  If you are so consumed by delusions and paranoia to the point where you have several psychotic breaks I would say that yes, it is worth it.  But it is not that simple.  First you have to commit to taking the medication for at least a year, probably making medication adjustments till you find the best combination.  These are potent drugs and it takes time to adjust to having them in your system.  I would never have entered into the recovery stage if I hadn't had a whole lot of patience while trying to find what worked best for me.  After I did find the right combination, I would have years of struggling with depression and later anxiety.  I'm not going to kid you, recovery takes years not months, though it seems to me that the earlier you catch it and treat it the better the prognosis is for the long term.  That's for those who respond to the medications and the only way you find that out is by consistently taking them over an extended period of time.  When I first became acutely ill my psychiatrist gave me a lot of free samples of anti-psychotic medications to try because I didn't have insurance.  I had three breakdowns in three and a half years and each time I fell I would try taking some of the medication, but I would always stop after a few weeks or a month.  I dabbled in it and that did me no good.  If you're going to do, do it, commit to it, test it out, see which medications reduce your symptoms the best.

There are several reasons why I am faithful to taking the medications despite the side effects.  The most basic motivation for me is fear.  Only those who have crossed over repeatedly into insanity know how disorienting and frightening it is to lose one's mind amidst the onslaught of psychotic thoughts and feelings.  While I was in it I really felt as if  I were being psychically crucified.  I was figuratively lost at sea with no sign of help on the way.  I was in so much pain.  I lived in a twilight zone with maybe one foot tentatively in reality and the rest of me consumed by illusions.  I was battered by repeated breakdowns and the further along I went in that direction, the closer I got to yearning for death.  The medications gave me an opening, a window away from death and back towards life.  I took that chance.  I compromised.  I knew one thing clearly, I never wanted to return to a life of acute psychosis and I was willing to go the distance.  I'm here to tell you that I am so glad that I did.  My life is not perfect, but it is solidly good.  I am grateful to be alive, even when I'm suffering.  I no longer feel as if I'm on trial waiting for the jury to come back with their decision -- life in hell or a second chance at becoming a better human being with the odds tipping against me.  The medication is part of why I have beat the odds.

Another reason why I take the medications is to reassure not only myself, but my loved ones and society at large that I am doing everything possible to treat my illness.  I see it as accepting responsibility for myself and taking care of myself.  I also see myself trying to set a good example for those who are in the acute stage of psychosis to at least give the medication a try.  If you are one of the ones who does respond to medication, it gives you a choice of something that might help you to avoid suicide.  I hate to say it so plainly, but it is a hard, cold fact, if you develop schizophrenia it is going to become acute, a trial by fire, in which things will eventually come down to life or death if gone untreated.  It is those lost souls that I am most concerned about.

But what of those people who don't respond to the medications or who have way too serious side effects, what are they to do?  Before I began taking the medications I found a therapist and saw her once a week and I went to the only support groups available for mental health in my community:  Al-Anon and a domestic violence support group (I had lived with an abusive alcoholic for over five years...).  My voices were both positive and very negative, angels and devils and sometimes angelic devils and devilish angels.  I don't know how to explain it but they tormented me into reaching out to help others.  They said I had to "be of benefit to my community".  It was their idea, both the good and the bad voices, that I seek out a therapist, that I check myself into a hospital for an overnight stay so that I could get my diagnosis, that I go to support group meetings and actively try to help the people (mostly women) I met there, all while I was floridly psychotic.  What I really wanted to do was to go hide in a hole somewhere and try to survive the storm, but the voices absolutely forbade it and threatened permanent hell if I tried to avoid being responsible to myself and others.  I was required to pray for everyone in my support groups, required to make frequent calls to them to see how they were doing and to generally go out of my way to help others when I was in such desperate need of help myself.  I didn't tell almost anyone that I suffered from schizophrenia because I was still in denial about it.  So though I was busy helping other people, I was at the same time very isolated, living in that twilight zone and only talking to my therapist once a week.  What I really needed was to be surrounded by my peers, especially those in recovery.

If you have decided not to take the medications or they don't work for you, you must have a support system in place.  Actually that goes for people who take the medications as well.  Isolation is so tempting and I understand that some of that is necessary to reduce stress, but connecting with others who are in the same boat as you is the light at the end of the tunnel.  For me, the connection has been nearly entirely online because my community has not organized mental health support groups yet.  So far, this online presence alone has been able to sustain me, though I really believe that face to face meetings work to lessen the sense of isolation and to connect people within their communities.  It's one thing to contact someone online for support and quite another to call someone in your community and possibly see that person and interact with him or her.  Really both online and offline support are very important.  The more avenues are open for communication, the better you will feel.  This goes for individual therapy as well.  Talk therapy is known to work to alleviate symptoms.  So talk to your therapist, talk in your support group or at your club house, talk online and talk to yourself, too.  For me talking to myself took the forms of keeping a written and an audiotape journal.  The audio journal I began after I was firmly into recovery.  I'm not sure what it would be like during the acute stage of psychosis.  It might be disturbing, but then again it might be helpful to track the comings and goings of your symptoms.  I see it as a tool to develop further insight into myself and my illness.

Therapy, support groups and journaling as well as a dedication to one or more forms of creative activity (art, music, writing, etc...) give some guidance and direction and a release from the stress of holding one's psychosis inside.  My therapist taught me to objectify my illness, to see it as separate and distinct from myself.  If she hadn't helped me with that I might have internalized all that negativity and wound up feeling like some kind of monster.  Instead I believed in my basic goodness.  I was an ill person, not a bad person.  Adopting a Buddhist practice has gotten me to not only be very honest with myself, but has given me the tools to look at my mind with some discrimination.  Think of yourself as a compassionate and artistic scientist.  Study yourself.  I do think it is possible to overcome the trappings of psychosis without medication, but it would take great courage and discipline and support.  During the three and a half years that I was unmedicated I couldn't pull it off.  I broke down.  I had only partial insight and no support group.  It was all very new to me then and my main delusion colored my world; I lived inside of it.  I am not ashamed to say that my illness overwhelmed me to the point where I began to take the anti-psychotic medications.  There should be no shame in taking the medications if you need the help.  That's one area where I'm at odds with the anti-psychiatry people.  If they want to go cold turkey with their illness, that is their right, but they should not attack those that do take the medications. Some of us really need the help.  For some, our lives depends upon it.  There is enough stigma attached to mental illness without adding more into the mix.

I wish I had more to offer those of you who are sitting on the fence about whether to take the medications or not.  I only know what I know from my experience first without medication and then with medication.  I have not yet tried to reduce my medications or go off them completely.  Maybe someday I will try too, but if I do I will be prepared to the hilt.  So if you are unmedicated or going off your meds, have a plan of action.  Really think it through and never give up on yourself.

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.

The Value Of Talking Aloud

Still working with some depression.  I say "working with" instead of "struggling with" on purpose.  Struggling just worsens the depression.  When I struggle I think negatively, but when I work on a problem, I get into a meditative state.  And so the last few days I've been drawing and the drawing takes my mind off negativity and onto the problem at hand.  I've been using the Pitt markers that I bought this past Fall.  I draw a square or a rectangle to frame my work.  Then I face the empty space inside the frame.  I use one marker that is not a Pitt marker; it's two sided, one side chiseled to make thick and thinner lines and one side with more of a medium sized pointed tip.  Today I did a small sketch before I started the more committed work, so that I could get a sense of the design and structure of the work to come.  It also takes some of the pressure off facing the empty space inside the main frame.  It allows you to visually ruminate and try different approaches out to see which one might be a successful skeleton, the basis on which to add new and colorful elements.

So I've been drawing because I don't want to give up on on art, just as I don't want to give up on writing or making up songs.  Though I turn 50 this year, that doesn't mean that I have to give up on continuing to try to do artistic work each day.  I have heard of many cases of people turning into artists as they get older.  Maybe I'll be one of those people.  I was talking to Sam about how I see myself as artistic and multi-talented, but not as an artist because I get serious for several months and then switch to some other creative endeavor.  She said I was a "binge artist".  I thought that was funny and true, too.  I could also be called a "binge writer" and a "binge songwriter".  And they're all different languages though related.  But I don't like thinking of artistic creativity as an addiction because it really isn't.  If anything, self expression is a treatment for mental illness.

Last night I was watching a DVD my brother made up for me in 2008 called "Out of the Shadows", a documentary on Depression aired on PBS about that time.  At one point in the film certain experts were saying that medication combined with talk therapy was 70% to 80% effective in treating depression in many people.  They also said that there have been studies proving that talking affects the brain and brain chemistry for the better by reducing stress.  I know this for a fact because I've been talking into my audio journal since the end of 2006 around the time I began this blog and it does reduce anxiety, but you've got to be very honest with yourself and you've got to treat yourself lovingly.  It's also good practice for talking/writing to others with honesty.  Most human beings respond positively to upfront, honest individuals because they have a certain balance between presenting their strengths and their weaknesses.  They are interested in peaceful communication and not in preserving a false image of themselves.

The first thing an addict has to do in order to survive is to get honest.  That's also true for those of us who have fallen into severe mental illness.  When I became delusional and paranoid in the Spring of 1998 I was not being honest with myself.  I took reality for granted and didn't stop to reality check.  I made huge assumptions.  Worse, I was not appreciating the reality I was living in.  I wanted to be somewhere else, in another life.  I had delusions of grandeur.  The reality is that most people work to find success, but I was still working with the "lucky break" attitude.  I was being a gambler.  I was relying on magical thinking.  Very dangerous to an already isolated person with self-esteem issues and a past history of being abused.  I sank into delusions and paranoia as if I were sinking into quicksand with seemingly no branch to reach for to help pull me out of the pit.  But all the while I was seeing myself as a victim too and a kind of anti-heroine, an underdog figure.  I knew "The Truth" and some group was trying to suppress the truth, but I firmly believed that "The Truth" would prevail and I would be vindicated and consequently elevated to some higher status.  But the core of "The Truth" was the main delusion and I held onto it as if it could save my life, when it only pulled me down deeper.

I talked a lot out loud to myself and the voices during my three and a half unmedicated years of acute psychosis.  I really had to.  I was deluded and paranoid and I was in pain.  Talking aloud gave me back some control and released anxiety.  I also wrote in a journal, which again gave me a voice to vent my frustrations.  I thought I was being very honest when I talked or wrote, but the only real reality check I had was when I went to therapy each week.  I was too sick to give myself a reality check; I needed someone outside of myself to point out the flaws and inconsistencies of my basic delusory beliefs.  But first I needed to be in a safe position where I could confidently assert my delusion.  My therapist was not always challenging my beliefs.  She let me have my say and I needed some of that.  She gave me some room to move about.  And I imagine that a mental health support group could also provide that safe place to reveal one's illness to others and to listen to useful feedback through personal stories.  I didn't and don't have that yet and so I had to learn about being honest with another person mainly through my therapy sessions.  I think a support group could have helped me to come to recovery more quickly than I did without it.

It's ironic, but what I didn't like about the voices was that they could be manipulative, indirect and deceitful.  I thought that I was honest and upfront.  I wanted someone to literally knock on my front door in order to tell me the plain truth about what was going on, someone who knew these strange voices and had already been through their own trials and tribulations.  I searched and searched and waited and waited and no one came to enlighten me.  I remained in isolation, in delusion and paranoia.  In the interim, I had access to the internet and this helped to lessen some of the isolation though I also used the internet to try and confirm my delusions.  I wasn't yet taking responsibility for the fact that I was ill and needed help.  I wasn't awake enough to see that I was still lying to myself and still addicted to my delusions.  But during my last breakdown a little over ten years ago, I turned to the medications out of desperation and I followed the 12 step Al-Anon support literature to guide me back to partial balance.  I treated myself like the very sick woman that I was, with gentleness, compassion and tolerance for my slow progress out of acute psychosis.

So talking either from a delusional perspective or a "real" perspective is very important.  Talk to yourself, talk to a therapist, talk to your support group, talk to family members, talk to friends.  Don't be the strong, silent type.  Express yourself.  You can't move from a delusional world into the real world unless you do.

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.

The Need For Mental Health Support Groups Is As Strong As Ever

I just listened to a 50+ minute National Public Radio show hosted by Diane Rehm on January 11th.  You can find the web page and audio link here.  The topic of the show was called "Serious Psychiatric Disorders Among Young Adults" and was aired in response to the January 8th shooting by Jared Loughner in Arizona.  For the past week I've been avoiding listening to or reading news reports about the shooting, but then I read Jen's Blog today and that got me thinking about the lack of basic services in this country for the mentally ill.  There's no doubt in my mind that anyone who wields an automatic weapon and fires on innocent and defenseless people is mentally ill.  I still believe that violence is a form of mental illness in anyone, but we live in a culture that defends certain forms of violence particularly by police officers and soldiers.  And I bet if we could get inside Jared Loughner's mind, we would hear similar justifications about why he resorted to violence.  But aside from some people's fixation on the right to bear arms in the United States, the real issue here is not only the need for gun control, but the need for a vast improvement in mental healthcare services in communities both large and small all across the country.

There has been massive deinstitutionalization of mental patients since the 1960s, the result being that many of those patients became either homeless or put in prison.  What was needed then and still is needed some 40 years later is a functioning community service system for outpatients which includes access to medications, housing, therapy and local mental health support groups.  Of all those things, the one thing that doesn't require much money is support groups, preferable groups for families and friends of the mentally ill and and groups for the mentally ill themselves.  Advocacy groups for and by the mentally ill like NAMI are doing a good job in creating a weekly 90 minutes peer led support group in some places, the problem is that there is both an application and approval process and a 3 day training program that must be gone through before a group can start under the auspices of the NAMI organization.  Unfortunately, the training programs are relatively few for the size of this country.  In my state of New York this past year were only about two.  NAMI is an important organization, but it is not large enough to supply the services that are needed, particularly in rural communities.  I believe that there should be other organizations that focus specifically on cultivating the wide spread of mental health support groups.

I have stressed the importance of support groups before and have even dreamed of starting a group in my town, but on my own and without help from others I am not strong enough to get the job done.  Initially there is the need for a couple of highly motivated people in the community to set up two groups, one for the family and friends and one for the afflicted.  These people need to be either mentally healthy or firmly in recovery, able to show up to the meeting place each week, rain or shine, regardless of whether anyone else shows up.  I base this idea on the Al-Anon group I used to go to where there were two to three people who showed up each and every week.  Their dedication made the group viable and welcoming.  And though I have never had a sponsor, I think sponsorship should be encouraged in mental health meetings that have people who are grounded in recovery and willing to guide a member who is less far along.  This is just common sense.  I also believe that every college out there should have at least one mental health support group organized by the counseling center or the students themselves.  The university in my town gave up on a group a few years back because no one was showing up.  To my mind that is not a good enough reason to stop.  The founder of the Al-Anon group I mentioned showed up consistently for months before a few people started to show.  A meeting place, preferably two people and consistency are key.  That should be doable, especially in a college.

It's so obvious to me now that those with schizophrenia go through definite stages, a "normal" stage, a pre-psychotic stage, an acute psychotic stage and, for those who survive the acute stage, a recovery stage which can be broken down into various other stages from mild recovery to strong recovery.  Those in the pre-psychotic stage or prodromal phase might get the help they need very early if family and friends and teachers, etc... are perceptive enough to notice and remark on certain behavioral changes.  I lived in an extended prodromal stage from my mid 20s to my mid 30s.  I was socially isolated.  I didn't get a job or leave home and I heard occasional voices which I didn't discuss with anyone.  By the time I was 27 I was in a relationship with an abusive, addicted and mentally ill partner.  It was only then that I began to admit that I was mentally ill.  It took three years out of that relationship before I showed signs of being delusional and paranoid.

The problem with the early stages of the acute phase of psychosis is that some of us are not ready to accept the label of schizophrenia and others aren't able to admit that they are ill, but it is then that an intervention can really do some good.  Jared Loughner acted out enough in school and in his YouTube video to warrant an early intervention, but the people in his life didn't take action soon enough to prevent him from acting out with an automatic weapon.  The people in my life didn't take action either, though, in retrospect, I wish they had; it might have led me into treatment much earlier, might have kept me from getting involved with an abusive person, might even have averted the suffering of acute psychosis altogether.  As it stands, I wasted a chunk of my young adulthood, hurt my partner by accepting his abuse, and endured a lot of psychotic pain.  Like most of the mentally ill, I didn't become violent, but I know that if the circumstances had been a bit different, I could have.

The hard part for all of us is taking responsibility for ourselves and each other.  I think that when people act badly, it is because they feel badly.  So the loud, obnoxious, abusive people in this world don't need to be dismissed or put in jail, they need to be taken care of.  Suffering is expressed in all sorts of ways.  If violence was seen as mental illness, Jared would have been treated a long time ago.