A Recovery Blog

This blog is about my continuing recovery from severe mental illness. I celebrate this recovery by continuing to write, by sharing my music and artwork and by exploring Buddhist ideas and concepts. I claim that the yin/yang symbol is representative of all of us because I have found that even in the midst of acute psychosis there is still sense, method and even a kind of balance. We are more resilient than we think. We can cross beyond the edge of the sane world and return to tell the tale. A deeper kind of balance takes hold when we get honest, when we reach out for help, when we tell our stories.

Thursday, August 30, 2012

Book Review: "Dharma In Hell" by Fleet Maull

"I'm thoroughly convinced after spending fourteen years in prison with murderers, rapists, bank robbers, child molesters, tax dodgers, drug dealers and every sort of criminal imaginable, that the fundamental nature of all human beings is good.  I have absolutely no doubt in my mind."
                                                                                                                   Fleet Maull

Fleet Maull started out a Buddhist practitioner studying with Chogyam Trungpa, Pema Chodron's root teacher, in the mid 1970s into the mid 1980s.  During this time he also became both an addict and a cocaine drug smuggler.  He lived two lives side by side.  After being under investigation by federal agents for a while, he was indicted in May of 1985 and following the advice of some senior Buddhist teachers, he turned himself in.  He got a 30 year, no parole prison sentence.  This was his first and longterm introduction into hell.

His years of Buddhist training gave him a spiritual and practical foundation, a focus and a purpose, which, despite the hellish circumstances, he soon put to good use.  Being in such close contact with all the men suffering around him and wanting to be of service as his teacher Chogyam Trungpa had taught him soon shifted his attention from his own pain to the pain of others.  Not only did he start a meditation group, but he also found a way to begin a prison hospice program and became a hospice worker for the rest of his stay in prison.  He was particularly moved by the isolation and suffering of AIDS patients during a time when the fear of contracting AIDS was at its peak.

Meditation practice was anything but easy in an environment of overcrowding, noise and potential violence, but Fleet Maull was not deterred.  He committed himself wholeheartedly and set an example that other inmates could respect, some even follow.  Meditation was his life raft, but his service work with dying inmates gave him the spiritual food and water to sustain him through the many years that followed.  In this way, virtual strangers became friends and the friendships he created gave meaning to him and to those he helped.  Of course, it was not easy sometimes, but even the difficulties became important lessons that helped him to continue with his important work.

In the first chapter of "Dharma In Hell" the author compares his Buddhist practice in prison to the Buddhist training gotten by serious practitioners in charnel grounds.  Charnel grounds are cemeteries for the impoverished; it is where dead bodies are left outside to be eaten by animals and to decompose.  A core teaching for Buddhists is the teaching on the impermanence of life and the fact that death comes for every living thing.  Accepting impermanence and death is an advanced yet effective practice, one that Fleet Maull embraced and through it all as his practice deepened, so did his moments of happiness.
Not easy, but a very useful and very honorable way to do time.

"Dharma In Hell" is a rather short book, but it is a good book to read to get some insight into life in prison from the perspective of a spiritual seeker and practitioner.  There is a Tibetan Buddhist mind training slogan that goes, "When the world is filled with evil, transform all mishaps into the path of the bodhi."  This is just what Mr. Maull did, he took extremely difficult life circumstances and turned them into a spiritual path.  This is good news, not only for other inmates who would like to do that same thing, but for all of us who have struggled with harsh realities.  The hells we face on earth can be transformed, if not into paradise, then into close approximations of it.  But it takes dedication to practice, it takes courage and it takes a willingness to open your heart to others.

I can identify with Fleet Maull's experience of prison, though I have never been inside a prison.  I've survived a domestic violence relationship and that had at times the extremely restricted feel that I imagine prisons to have.  And then there was me getting through the acute stages of mental illness where the paranoia, which is a deeply rooted part of the illness, left me feeling exposed 24/7.  I felt as if I were never alone and as if I could not escape to freedom, no matter how much I wanted it.  More than that, I felt the daily torture of it all and no matter how many people I was around, I still felt isolated in my misery.  The fact that people such as myself can feel what it is like to be imprisoned, while not being locked up in an actual prison, says a lot about the human condition.  But that the institution of prisons exists in the US for over 2 million people on any given day says even more.

It says that we as a culture do not want to deal with the fact that people are human, that they make mistakes, that they get addicted, that they get pulled into violence amongst other things.  Over 400 teenagers in the state of Texas alone have been sentenced to life imprisonment.  More than 70,000 prisoners get raped each year.  At least 50,000 men are existing in solitary confinement each day.  The US has the highest incarceration rate in the entire world.  To add insult to injury businessmen have turned making prisons into private business ventures.  This is the wrong approach; prison reform is desperately needed.  Convicts are so much more than what they are convicted of, they are human beings and the potential for healing their illnesses and reforming their behaviors is great, if they are treated with common sense and respect.  Give a man or woman who has committed a crime some respect and responsibility and let the transformation begin.

Fleet Maull founded the Prison Dharma Network in 1987.  You can also find out more about him on his website: http://fleetmaull.com

Sunday, August 26, 2012

John Lennon's Killer Denied Parole For The 7th Time

I feel honor bound to make note of the fact that Mark David Chapman, who has been incarcerated for almost 32 years for murdering John Lennon on December 8th, 1980, has been denied parole for the 7th time since the year 2000.  It is not surprising to me that he has been denied parole and I don't see him ever becoming a free man, unless they release him as a very old man.  Because he killed John Lennon, who was a beloved and iconic figure, and because so many people still revile Mr. Chapman for his violent act, he will be treated as a special case and be denied the opportunities that other men have been granted after spending over 20 years in prison because of having committed a murder.

The reason I feel honor bound is that I believe that Mr. Chapman suffers from elements of the same illness I have suffered from, namely schizophrenia and other related illnesses.  Though I am amongst the majority of the mentally ill who have not been violent towards others, under other circumstances it could have been me locked away in prison with little hope of getting out.  And for me it brings up the question:  how should mentally ill people who have been violent be treated?  Many say, keep them locked up for life and others say kill them, but I think that is an evasion.  I know from experience that one can become extremely deluded and paranoid and then come out of it and return to some form of recovery.  The difference between me and Mark Chapman is that he committed one act, the act of murder, that he can never take back.  But does he really deserve to be locked up in a 6' x 10' cell, mostly in isolation, for the rest of his days?

Many people say yes, including Yoko Ono, who fears that Mr. Chapman, if released, would go on to murder one or both of John Lennon's sons.  Truth is more likely that Mr. Chapman would be in more danger of being harmed than of doing the harm because, even over 30 years later, some people still want violent retribution for what he did.  What Mark Chapman did was the result of severe mental illness and easy access to a gun and to ammunition, but some elements of society that believe so firmly in retribution, are also mentally ill.  I've read numerous comments from people, including a 12 year old girl, wishing for Mark Chapman only torture and death.  Even if I weren't leaning very strongly towards Buddhism, I would still believe in the preciousness of compassion.  I have been influenced enough by Jesus' instruction to love one's enemies, forgoing judgment in favor of compassion, to know that I believe that hatred cannot conquer hatred, that only love has the power to deeply heal even the hardest of men and women.

From what I've read, Mark Chapman is neither hard hearted nor uncooperative.  There were a few instances of acting out during delusional episodes in the first decade or so, but there has been no record of misconduct from him since 1994.  He has been described as a "model prisoner".  He is kept from most other inmates because there is fear for his safety still.  He is a Christian, more specifically a Born Again Christian or at least he was at his last parole hearing two years ago.  I have no idea if he was or is being given therapy, but it appears he hasn't taken psychiatric drugs for many years.  Early on he said he disliked psychiatry and resisted being labelled a schizophrenia sufferer, but he did hear voices and was under the sway of delusional thinking off and on for years.  He chose to plead guilty to the charge of murdering John Lennon, instead of pleading innocent by reason of insanity, though many of the psychiatric doctors who tested and interviewed him asserted that he was definitely psychotic.  Regardless of this, he accepts the judgment handed down to him and knows he may never be free.  Part of what sustains him is his faith in a higher power.  Within the solitude of his life and in his heart, he believes that he has been forgiven.

What if Mark Chapman was your brother, son or husband?  How would you respond to him?  What kind of treatment would you want him to have?  There are millions of people with mental illness in the U.S. alone with a percentage that has fallen into violent attitudes and actions and there are millions of family members and friends who have been affected by the mentally ill.  This is true for those who are addicts as well.  The network of people affected by mental illness combined with those affected by addiction is vast, yet too many of us still remain silent.  There is too much stigma and shame attached to mental illness.  That's one reason why I write in this blog.  I refuse the stigma and I refuse the shame and I hope to encourage others to follow and share their stories.  Of course, we all have to work our process through gradually, but at some point I think we will be given the opportunity to be of help to others and to openly question the narrow-mindedness of stigma and the punishment that often follows.

Everyone of us has made serious mistakes in life, but when judging others who frighten and repel us, we often turn a blind eye to our own shortcomings.  And sometimes by doing that we transform into the very kind of being that we once condemned.  Judgmental, violent, mentally unstable, if not in action then in attitude and in intent.  In becoming hardliners we have to watch out about becoming hypocrites, too.  I know that I was at my sickest when I was full of resentment and judgment and that's what prevented me from starting to heal.  I was so involved in my own delusional story line that I wasn't able to see the bigger picture.  The bigger picture is so big because it includes everyone.  There really is room enough in all our hearts for everyone, but we have to turn our will towards it and cultivate it like we would cultivate a garden.

Sunday, August 19, 2012

Change Of Diagnosis And A Response To Michael Moore's film "SICKO"

Several months ago at my psychiatrist's office they changed several things.  Now one must pay the copay upfront, prescriptions are no longer written out but called into one's pharmacy and each patient gets a print out that lists the diagnosis and current medications.  I noticed that my diagnosis was no longer schizophrenia, but schizo-affective disorder.  Just when my psychiatrist changed my diagnosis I do not know, but he never informed me of it and so far I haven't talked to him about it.  I've been so used to labeling myself a schizophrenia sufferer that it has taken me these several months to re-name my condition.  The truth is that schizophrenia, schizoaffective disorder and bipolar disorder are all related, but for some reason doctors seem to need to separate us.  Just about all my online friends suffer from schizoaffective disorder and several of them said that they thought I might suffer from the same thing because I've struggled with a lot of depression.  It's not so clear to me.  Many schizophrenia sufferers also suffer from depression, so what is the big difference?  Many professionals are not so sure and often misdiagnose patients or, as is true in my case, see a change from one condition to another very related condition.

So what is the difference between schizophrenia, bipolar and schizoaffective disorders?  Schizophrenia is considered a thought disorder, bipolar is considered a mood disorder and schizoaffective is considered a combination of a thought disorder and a mood disorder.  I'm not sure if I've got my statistics exactly correct, but generally speaking bipolar disorder is the most prevalent disorder out of the three affecting perhaps 3% of the population; schizophrenia affects about 1% and schizoaffective about .5% of the population.  Despite people with schizoaffective suffering from the worst of both schizophrenia and bipolar, it also appears to have a better longterm prognosis.  Not sure why.  Maybe there is more of a chance for balance instead of being stuck in one camp or another.

I've also read that anxiety disorders are fairly common for people with schizoaffective disorder.  The irony for me is that my problems with anxiety seem to stem from my high dose of the anti-psychotic Abilify.  Did I become schizoaffective because I began ingesting this medication?  Do medications, depending on their dosages, actually cause mental illnesses instead of preventing them??  This is an issue that Karen has also been exploring as she lowers her medications because she's seen that she is much healthier and productive on a lower dose of the anti-psychotic.  And since I lowered my dose of Abilify, I have had similar results.  Sometimes I wonder about conspiracy theories about pharmaceutical companies misleading so-called "consumers", which by the way is a horrible word for people who suffer from mental illness I think.  But that's just how they must see us and so that is what they call us.  I often wonder too about the Republican orientation towards glorifying business and the potential riches that come to mere individuals from doing business.  Business at the expense of morality is not business, it is swindling.

My brother gave me the documentary by Michael Moore called SICKO.  I saw it several years ago when it came out and watched it last night again.  I'm thinking of lending it to my friend Richard, who dodges calling himself a Republican, but who, in his views, really is Republican.  I have some hopes that some of what's in this critical, but also funny, documentary might make him pause and reflect and perhaps change his opinion.  He is after all a rehabilitative VA nurse.  He knows up close about how people suffer and die.  We have agreed several times that euthanasia should be a legal choice for people who are slowly dying while in pain.  Of course, he can't say that openly, but to me he sees the compassion of an overdose of morphine in certain cases.  I want the right to end my life if I so choose if I come down with something incurable and if that is denied to me in the future, I will find a way on my own, but it would be nice to go with a certain amount of dignity and in the company of family and/or friends.

If you haven't seen SICKO, do try to see it.  Yes, Mr. Moore's point of view is definitely left of center, but he interviews real people both in this country and in Canada, England, France and Cuba, countries that have successful universal care, that is government run healthcare for all.  I know the United States is a much larger country in the literal expanse of the land and in population and that that may make the changeover to universal care more complicated, but I still believe in time that it can and will be successful and stop all the unnecessary deaths and illnesses and heartache of too many Americans.  I have health insurance (at over $1000 a month), but this film shows me that this does not mean that I have security if I come down with a more serious health condition.  Right now, I have access to my medications, as does my brother, who suffers from Type 2 diabetes, but I can't be sure that I will always be covered, unless the Affordable Care Act goes into effect in 2014.

Mr. Moore's film has its funny moments certainly, but underneath it all it is very serious.  I think the humor is the sugar that makes the medicine go down more easily.  Humor is a bridge between opposing camps, at least sometimes.  Mr. Moore does mock the idea that the right holds onto like a dog with a bone that socialism is the anathema of democracy and capitalism.  He points out that we already have socialized institutions in place with the fire department, libraries, the police department, the postal service, etc... and our country has not fallen apart because of these public services.  If anything, we are more likely to fall apart without them.  Does the government need to be held accountable for infractions?  Yes, definitely, but so do private citizens who abuse their business privileges.  Health care for all should be a right and not a privilege for all people and without moral judgment against those deemed somehow unworthy.  Fact:  we are all going to die, many of us from sicknesses if not accidents and we must be compassionate about our eventual destiny and treat each other with dignity.  And yes, this does mean that those who have a great deal must contribute to those who don't.  The idea that people are superior because they are rich is to my mind a sick perspective.  They are not superior, they are damned lucky, no matter how hard they have worked.  People work very hard all over and most don't get a fraction in comparison.  This is not justice for all.  This is justice for some and that just doesn't cut it.

One Englishman that Mr. Moore interviewed said that the difference between his country and ours is that the English government is afraid when people protest, which English people have done over time with a fair amount of success.  He says poor Americans are disillusioned and instead of fighting back they are rather cowed into submission.  Many, too many, refuse to vote (like my friend Richard) because they've concluded that all politicians and people in government are corrupt.  And a lot are.  But that is not a very good reason to give up.  Maybe, with the advent of the internet and social networking, that is changing.  I really hope so.  The American frontier and farmer mentality of being the self made American and doing it on your own is outdated at best.  At worst, it degenerates into the ugly American view that many other countries have of us.  We can't do it on our own.  We are interdependent and have to care for each other, especially if we've been fortunate financially or otherwise.  Greed is a very ugly trait to encourage and develop and extol.

Friday, August 10, 2012

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.