From Past To Present

(Click on the pictures to enlarge them.)

I found these photographs not too long ago.  They were taken in approximately 1979 when I was 17 years old.  In the top photograph I am the one smiling on the left side with the short dark hair, the pea coat, dark skirt and the fry boots.  My best friend, whom I'm calling Colette, is on the right side looking up, wearing the hat, the light colored skirt and a pair of her favorite cream colored cowboy boots.  The girl in the middle was more of a friend to Colette than to me, but I liked her.  These photographs were taken by someone from our high school and the second photograph I think was used in our year book.  Unfortunately, I've long since lost that yearbook, but miraculously these photographs, along with a few others, have survived.

This was our senior year and it was around this time that Colette and I, after having been very close for a couple of years, began to move apart from each other and you can see this a bit in our body language.  In two of the photographs we are separated by the girl in the middle and in the other photograph we are each in our own world with only Colette making eye contact with the photographer.  You wouldn't know that Colette and I had been good friends from these pictures.  There's no hugging or leaning against one another or even eye contact.  And in the last photograph I have my back to the camera.

I love the way Colette looks in these pictures.  By this time she was both a talented modern dancer and a good actress and so she was perceptive, a good mimic, quick and expressive.  Here she's dressing in a typical Colette outfit -- the long skirt or sometimes dress, the boots and the hat.  I, on the other hand, am not dressed typically here.  I rarely wore skirts or dresses or my boots.  My uniform was more pants, t-shirt, a man's black jacket, Adidas basketball sneakers.  Colette dressed nicely whereas I dressed down.  In the City, especially on the subways, I didn't want to draw attention to myself and so I became more androgynous in my look.

The reason I'm posting these pictures, other than giving a few of my friends a chance to see me way back when, is because I decided to reach out to Colette by sending her a link to this blog.  I discovered her online about 3 years ago, gathered up several juicy tidbits of information about her, marveled at her success in life and felt badly about myself in comparison to her.  I also felt badly that I didn't fight to keep her as a friend because she was a really great friend to me.  And then there's my memory which is good in spots and not so good in other spots, probably due to the schizophrenia.

I talked to my friend Rita about contacting Colette by giving Colette a link to my blog.  Rita suggested that maybe I should write her an email first and get to know her a little and not spring all this stuff of mine on her.  I thought about it and tried writing yet another email (I've written a couple that I never sent), but it didn't feel right.  I would rather open myself up to Colette, have her do her own investigation of my blog, artwork and music, in her own time, at her own pace.  I also want her to know that she's under no obligation to renew our friendship.  I know she's a  busy woman with a full life and she may not have the feelings for me that I still have for her.

I want her to know that though I haven't had her success in life, I have been creative and thoughtful.  At least I have something to share with her.  I know that I am making myself vulnerable before her, but I see that as a form of respect.  I hope she enjoys some of what she finds.

Approaching 50

I am almost at the mid-century mark; it is a bittersweet victory, but the bitterness grounds the sweetness the way soil grounds the tree.  Bitter soil, sweet tree, add some clouds and rain, then top it off with a day full of sunshine, maybe that's what my life comes to so far, something bucolic, seen from a distance, as many years have passed.  Up close, it's been a different story; there have been tornadoes and hurricanes and earthquakes...but not for most of this decade, my now receding 40s.  These have been my recovery-from-severe-mental-illness years and they have coincided with my middle age.

Most of us don't make it to 100 years old, though I think the statistics on that are changing, and I don't consider 50 "middle age".  For me 50 marks the beginning of old age and, in my book, that's a good thing.  I see it as a potential to have a second flowering, but it requires that I let go of the first one.  For all of us, with the first flowering, we blossomed from child to adolescent to young adult.  From adulthood through middle age we began the habit of looking backwards as we lived past our physical and sexual peaks. By the time we get to 50, we have to take a stand, either we fight against the changes of physical aging or we accept ourselves as we are, a person past his or her prime.

I am a person past my prime in my body, but maybe not in my spirit.  I accept that with awkwardness instead of graciousness, at least for now.  Maybe someday I will let go of identifying myself with my physical appearance and then I will find the graciousness I lack.  That's what I'm hoping my 50s will give as a gift, the graciousness to accept myself as I am despite a youth obsessed culture.  To many people signs of aging are like signs of falling from grace.  Recently I was watching "Up With Chris Hayes" on MSNBC and he mentioned this actress, Ashley Judd, who wrote an op-ed piece in The Daily Beast on  the media outcry over the fact that she is an almost 44 year old woman who now looks her age.  They vilified her for having a "puffy" face, for no longer being a size 2-4.  In my opinion she is still a nice looking woman, but she is no longer young and in her prime.

We are not super action figures and, despite those people who have aged well into their 50s, we are supposed to change, get older and die.  These are the facts of life and not about personal failing.  But many of us, male and female, take aging on as if we did something wrong, made too many mistakes and are somehow to blame.  We fell for the myth of ageless perfection, which none of us actually had, but some of us approached superficially in our bodies.  The reality is that perfection is more of a state of mind than an actual thing.  We go in and out of perfection.  The myth is that we can live outside of aging; the reality is we are tied to each breath we take, to each moment's time and place and to our exact ages.

We are human and as fragile as every living thing is fragile.  We take risks, we grow up and maybe we grow old; if we're very fortunate we grow old in relatively good health.  For some, seeing the aging process in loved ones or popular media figures is saddening, for others it is just nature coming through, and for still others, there's an appreciation for the person, a genuine fondness for the deepening of character within that individual.  But there's one thing I've overlooked and that is fear -- we fear seeing people age because we know it means that someday they will die and then someday we will die.  Mostly people in our culture don't have open, healthy discussions about death and so we stay in a denial about it, we say to ourselves, "someday...but not now."  Staying in denial is why I think we fixate on youth and youth culture fostering the illusion that we can be invincible in the face of tough odds.  But maybe, as people live longer, that will change and we'll move into a more realistic culture that is not afraid to embrace the life cycle.

Physically the life cycle is about birth to the peak of life and then into decline, and finally, into death.  Mentally, emotionally and, yes, spiritually, life's transition points are more subtle and complex.  I mentioned this idea of having a second flowering after middle age because I have heard stories from people who have lived into their 50s and beyond who have gone through it.  Many people describe the great relief they feel as they shed the self-consciousness of their younger years.  It becomes less about how you look to yourself and others and more about how fully you experience things.  The irony is, the more fully you experience things, the younger you get, obviously not in your body, but in your spirit.  As is the way with the flexibility of human nature, some young people think and act old and some older people think and act young.

I've been preparing to turn 50 this whole year.  Years ago, when I was acutely ill, the voices told me that I would be very happy in my 50s and 60s.  I was in my late 30s then and I was miserable at the thought of having to wait so long.  I went head first into middle age and lost even more of my personal illusions.  I was no longer young and attractive.  I decided against getting romantically involved with anyone.  I had to find other ways to value myself and, to a certain extent, I did.  I stayed creative from before the beginning of my psychosis till now.  This has given me some of my self-esteem back.  This blog, through my ups and downs, and through readers, has given me a place to speak out.  Here it's not about how I look, it's about what I have to say; it's about working hard to express myself clearly in writing.  There's an invisible contract between writer and reader that I try to abide by:   be honest, be clear, strive for personal integrity and be respectful of others.  I can work with that.  That's what it is to be alive and still growing even past one's prime.

How Psychotic Am I?

Statement:  I believe that the voices that I hear within my mind are from a real and highly intelligent source and are not audio hallucinations.

Psychiatrists and some therapists would probably say that I am deluded about my audio hallucinations.  They would say that I am psychotic, though no longer acutely so.

So how psychotic am I?  How much of what I write about has common sense intelligence in it and how much is just off the wall insanity?  I'm hoping that most people can follow my thought process in my writing, that I come across as basically sane, even trustworthy.  I hope for that because I want to be of help to others and I can't do that if I'm not making sense.  So I don't write about my voices much because I know to do so would be to lose what small credibility I have to begin with.  Now that I think of it, this is misleading because I am leaving out a key ingredient of my daily experience.

There are people who hear voices who are not psychotic and those that don't hear voices who are psychotic.  I started out hearing voices before I became delusional and paranoid and they were basically non harming and even helpful.  It's when the voices became intrusive and manipulative that I quickly became psychotic.  I believed in the delusions and paranoia and the voices took on many roles from sadistic to benevolent.  While I was acutely psychotic I interacted with the voices in a way that I no longer do.  The medications appear to have given me some distance from them and a sense of quiet space to reflect on my daily experiences.  But even with the distance, the voices are another layer of awareness in addition to my own awareness; I know I am never alone in my mind and experience.

I'm assuming that those of you who don't hear voices must take that last sentence and dismiss it as not real.  That's too bad because then you can't see into my world or rather what you do see is just a fraction of what is there.  If you were brave enough to suspend your disbelief and consider what it means to have voices that are not audio hallucinations, what would you find?  You tell me.

The voices are as constant to me as the rising and setting of the sun and as real as the blue sky that always resides behind the clouds.  But like the mind, they have no visible substance.  There is no concrete proof that these voices that I hear come from actual beings.  But if there were proof what would it mean for the consciousness of the whole world?  It would mean different things for different people.  Finally, we would have to stop imagining ourselves as alone in the universe.  But that these beings could somehow enter into our collective consciousness and into individual minds might not be so reassuring especially when the messengers are the mentally ill.

Am I doing people who believe their voices are audio hallucinations a disservice?  Shouldn't I be saying to them it's all just a genetic defect, a biochemical glitch?  I do believe that genetics and biochemistry are involved in developing psychotic disorders, but I would not be being honest if I said that that was the end of the story; being honest is what keeps me in recovery.  I can't lie about what I feel in my bones is true, but I have long since given up trying to prove my belief.  I can't prove it and it's been a relief to stop trying.  I've found that the people who are most sick are the ones who obsess on trying to prove their position.  At some point, you have to let go.  Letting go is a spiritual practice.

Still I believe that mental illness and recovery from mental illness is a psycho-spiritual process, one that requires that you stand up for yourself.  If you don't stand up for yourself, for your basic goodness, there's a good chance that you could be swallowed whole by the negative aspects of the illness.  Too many people turn to suicide or other forms of self-harm and many of those people wind up in and out of psychiatric hospitals or wards unable to live independently for any length of time.  If you have negative voices, you must search out the positive even within the negative.  My voices have called me evil so many times, but I rarely believed it, which is why I am still alive.  I said "No" to the voices assessment of me and yet I didn't harden myself against them.  I learned to cultivate compassion for myself, others and for them.

I did acknowledge to myself that I was sick and in need of help and I found a therapist within the first 6 months.  She taught me to see the negative voices as much sicker than myself.  This helped a lot.  Instead of internalizing the core of the sickness, hurting myself and possibly others, I learned to detach and defend the part of me I loved.  Initially I felt a lot of resentment towards the negative voices, but overtime, using the gentle practice of compassion, this changed and the voices returned to being mostly non-harming, even beneficial.  They still act up, especially when I get anxious, but I have changed my perspective on why they act up.  I try to see them as teachers and work with them instead of against them and myself.

Chris had asked me the question in one of her comments to a blog entry of mine "Would you really want to hear voices if you didn't have to?"  I honestly don't know.  I've lived with the voices for so long now, through thick and thin, and I have trouble envisioning life without them.  The medications do not remove the voices for me and if they can't do it, what will?  So I assume that they are with me for life and I have to adapt to their presence.  In accepting their presence in my life, I have come to appreciate what is good about them.  They are intelligent, creative, supportive and from time to time I really commune with them in a way that I don't commune with others.  They represent the whole spectrum of The Unknown.  In my heart of hearts, I believe that they are ultimately trying to help this world by working with people, individual by individual.

Anyway,  this belief that the voices come from a real source outside of me is what makes some people deem me psychotic.  So be it.  But don't tell me that I don't make a helluvalot of sense sometimes.  And how can that be that I am both psychotic and sensible?  Some might say that there's method in madness, but I'm here to say that there's truth in madness as well.  Don't ever discount the truth when you find it.  I'm here to challenge you to stay openminded.  I may not be able to prove that God exists, or angels and devils, or spirits, or aliens, but, on the other hand, you can't prove that they don't exist either.  There's more than meets the eye for all of our lives.  The mystery continues every day.

The Key Ingredient

Karen, Chris, Juju and Jen, thank you for your comments!  All of you amaze me!  You are all so smart, talented, hardworking and sensitive, despite what life has thrown at you.  What a great group; it's a pleasure to be connected to you.  And in a wonderful and serendipitous fashion you represent the whole spectrum of the issue.  Chris and Jen are anti anti-psychiatry, Juju sees value in both approaches and Karen has personally entered into reducing her medications, though very gradually, and is exploring the possibility of someday being medication free.  And you know what?  You are all right in your perspectives for your particular case.

Chris is symptom free and considers herself recovered.  She is one of the fortunate ones;  the medications seem to have given her her life back.  Jen went through years of hellish experience with her psychosis until she had a five month stay in a hospital where she began to take the medications for an extended period of time.  Gradually she has gotten her life back too and is in the process of becoming a social worker so she can use her personal experience and know-how to help other people (which she already does in her mental health advocacy work).  They both readily believe that it is the medication that has saved them and given them back the opportunity to have a full life.  I really do believe that part of the reason for their personal successes is due to taking the medications, but I must point out to them and to all who read this blog, that they are overlooking one key ingredient:  themselves.

They are both ambitious women who are motivated by their desire to help others.  They have both done a ton of research over time on mental illness, especially on schizophrenia and schizoaffective disorder.  Because they live in populous areas, they've had access to quite a few mental health resources and being who they are, strong women who wanted to take care of themselves, they took full advantage of those resources.  They not only took their medications faithfully, they got therapy, went to support groups, got vocational training and became serious advocates for mental health in the places they live and online.  They are one kind of success story and if you are like them, ambitious and very hardworking, and if your biochemistry responds to the medications and if you have the resources near you, I think you have just as good a chance as they did of finding personal success.  I have so much respect for both of them and I think they are doing the right things in their life.  There is no doubt in my mind that they will go far in life and help a lot of people.

But I'm starting to get the feeling that there are other success stories out there, success stories for people who don't respond to the medications or who are brave enough to attempt to reduce their medications, with the proper support.  We need all the help we can get, and if there are alternatives to using the medications, my God, wouldn't you want that?  Especially for those who don't respond to the medications?  We are all the same and yet we are all different.  We need to be pro-choice and never rule out the things we find that work for even the smallest percentage.  A small percentage of people who currently have mental illness in the world is in the millions!  Everybody must be welcome, everybody must be helped.  I don't think it is wise to take too strong a position (though I might be trying to do just that--ha!) because a one-sided opinion is actually a weak position.  To survive and thrive we have to be flexible, in mild winds or in hurricane winds.  Polarization works at keeping things polarized and the only real outcome to that is civil war.  And when that happens, people forget that we are all brothers and sisters on this planet.  Does that sound corny?  Well, I don't care because it's a big truth that too many of us ignore.

So I've written about Chris and Jen's story and given my response.  But what about Karen and Juju?  Karen is also an ambitious woman and a strong woman, like Chris and Jen, and like them she is a writer, but she is also a visual artist.  Her illness has restricted her for many years and she's learned to cope using both the medications, seeing a therapist and going to a support group (which she has also lead).  She is very smart and insightful and very dedicated to her art work.  Because she is so dedicated, it is important to her to be as sensitive, yet balanced, as possible.  After reading several books that challenged the so-called "medical model" of the need to be medication compliant, she began to consider reducing her medications to see if she could become more sensitive in her life and with her work.  In her system of priorities, being the best artist she can be is on the top of the list, even to the point of risking a return of symptoms.  Some people might call her foolish, but I think she's brave.  The main reason why I think she is brave and not foolish, is that she has a support system in place with her husband and therapist, with whom she is quite close.  She also agreed to return to taking the medications if her symptoms returned enough to require hospitalization.  And most importantly, in my opinion, she is staying vigilant to any and all changes, either for the better or the worse.  So far, on a reduced dosage of her medications, she is feeling better and not worse, but if I know Karen, she does not take that for granted.  She is no fool.  She also just wants to be happy, just like all of us and she likes a good challenge.

I, not only respect Karen, I identify with her because I am also a writer, an artist of sorts and a song writer.  I know some of where she's coming from and I just think she has a fine and sensitive heart and mind.  I want her to be very happy, which is why I want to be supportive of her decision to reduce and maybe eventually stop using the medications in conjunction with other alternative therapies (if possible).  So far she's had some success and if that continues it can only be good news, not only for her, but for people like me who want to learn from what works out there.  She's put herself in the frontier of people risking themselves to test out different approaches to their mental illnesses.  I don't have her courage, not yet anyway, which is why I look up to her.  I'm also way too ignorant and have a lot of research and studying to do, as well as feeling out what it is I want to do in my heart/mind.  And if Karen's experiment doesn't work for her, I'm sure she will be creative in finding out what will.  I know she can rely on her ability to be honest with herself.  Either way, success or "failure", I'll be in her corner.  She's the one who's really taking the risk here and she's not hurting anyone else in order to do it.

And Juju?  Juju is in the heartbreaking and sometimes maddening situation of being all she can be for her young son who suffers from schizophrenia.  He's lived with the symptoms of this illness since I believe he was twelve years old and now he is eighteen.  I only met Juju because she reached out to me and let me know about her blog which she just started in March.  She strikes me as a real, smart mama lion trying to take care of her wounded cub.  Her position is one of seeking any and all solutions or partial treatments to help her son.  And what is she, too?  A strong and ambitious woman who is also willing to go the distance for herself, her son, her family and her community.  In the comments section of my last blog post, she gave the best advice:  "Do what you need to do to be the best you you can be."  Now that goes for anyone.

So what's the key ingredient for all these women and for me and for you?  Our own sweet (and not so sweet, if we're honest) selves.  If there's a will, there's a way.  You have to believe in your self and love yourself.  And here's some more corny writing:  you have to be your own best friend.  There's a Buddhist mind training slogan that goes, "Of the two witnesses, hold to the principal one."  Pema Chodron says of this slogan in her excellent book "Start Where You Are", that the "one witness is everybody else giving you their feedback and opinions (which are worth listening to; there's some truth in what people say), but the principal witness is yourself.  You're the only one who knows when you're opening and when you're closing.  You're the only one who knows when you're using things to protect yourself and keep your ego together and when you're opening and letting things fall apart, letting the world come as it is -- working with it rather than struggling against it.  You're the only one who knows." (p. 146)

My challenge to you now and always is to be super honest with yourself while at the same time being super kind to yourself.  You don't have to be a superwoman or a superman, you just have to tell it like it is.  Stop running.  Study yourself.  See what works and what doesn't work.  Learn from your mistakes.  Trust yourself.  And if you're able to, and you know that you are, play fair with others, not just some of the time, aim for all of the time.  If you do, gradually (or maybe even quickly for some) the world will change for the better.  Guaranteed.  Let's give peace a chance and lets use our hearts and minds together to find the solutions that are within reach, for all of us and not for just some.

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.