Lately, I’ve been having trouble engaging with anything in life. My doctor used the metaphor of a tree without roots, that I am easily bandied about by the winds of society and external circumstance. In contrast, a tree with deep roots has developed intrinsic, or internal, sources of reward, by developing skills and passions in life. And that is what I need to develop for myself, if I am to be fulfilled and rewarded by life. He used the saying, “The journey of 1,000 miles begins with the first step”.

All my life, before my illness, I was a success by outward measures. I was a straight A student, took the most difficult classes, got into Harvard, and graduated with honors. But I quickly found that none of these - what my doctor called “false” - successes prepared me for life in the real world, or for living with a mental illness, for real hardship and challenges.

It is true that fortune is fickle, and for someone who seemingly had everything at an early age, I now have virtually nothing. I told my doctor that it is as if life is bound and determined that I learn this lesson: that external rewards mean nothing, that only what is inside can lead you to a fulfilling and satisfying life. This illness has made it difficult to obtain anything society values as successful — holding a job, raising a family, engaging in civic opportunities. I bear this label of schizophrenic: it closes doors to me that to others are wide open. But this is not what makes my life sometimes nearly unbearable (although it certainly doesn’t help my self-esteem any). The worst part is that, here I am, living on disability, unable to work more than a day or two a week, with seemingly endless amounts of free time on my hands. Most people who must work to survive only dream of such an opportunity. And yet, I can find little that sustains me and gives my life meaning or purpose day to day. As an example of what this might be, I picture myself in a studio, carving little wooden objects all day, as an image of some vocation that would give purpose and meaning and satisfaction to my day’s.

This blog is one positive thing in my life, that does give me purpose and satisfaction. I do love to write, I just hardly ever do. I suppose my first step today is writing this blog, after a few month’s hiatus, to begin again to write. I need this avenue of self-expression, and to articulate the process of my recovery here for myself and others. And so I begin to grow my roots, with this first step today…

I try to stay optimistic and strong in writing this blog, but I also need, this morning, to express how difficult and sad this illness is, schizophrenia. I have heard voices in my head for seven and a half years now, day in and day out. They are not the normal chatter that everyone experiences in their thought processes. They are malicious, nasty, mean, and utterly demoralizing voices that feel entirely external and independent of one’s own self and thought processes. Life can be difficult and full of suffering on its own, everyone knows this. But add this constant refrain of negative voices, and even when life seems like it is good and going well from the outside, it is experienced as pain and suffering on the inside. The voices in themselves are terrible enough, but add to this the fact that no one else can understand what you go through every day, and it becomes nearly unbearable.

No matter what I may try, no matter what medications I take, no matter what therapy I undertake, or life changes I may make, they - the voices - are still there, and things seem utterly hopeless. I often feel entirely forsaken, by God, if there is one, by science, which cannot cure me, by society, which shuns me. The one possible solace is all the others out there who are suffering as I do, only, I can’t seem to reach them, not on my blog, not in my schizophrenia support group, not in the mental hospital, not in daily encounters. This is a terribly lonely illness, one which destroys any normalcy in one’s life, just as one’s young adult life is beginning, an illness that is seemingly unrelenting in its downward spiral, an illness in which you watch as your mind deteriorates right before your eyes, losing your mental abilities and speed, memory, and most frustratingly, the ability to organize and run your life, as if becoming senile in your twenties. I’m sorry I don’t have any inspiring thoughts - some redeeming or uplifting sentence to wrap this blog up with, all I can feel today is total, all-consuming sorrow for me, and for the millions of others out there who live with the suffering of this illness every day.

I have made my peace with the world, here in my solitude, here where I am quiet, here in the calm. Outside, beyond my little alcove, the hustle and bustle of the world goes on, the force of our ordered chaos pressing forward, ever on. Outside, there is traffic, and transactions, the constant gathering, constant repair. The day has been hot and messy, the god of work demanding his daily dues. I bide my time for evening, the release of sun’s vice grip, coming of the god of play.

Because I try on occasion to write poetry, I thought I should share some with you. This one is particularly dark, but nevertheless honest.

“Hearing Voices”

I am wrestling with the demons in my head (not the metaphorical ones),

and they are winning.

I am lost, having found myself

at a stopping point

that drags on for seven years now.

They tell me, read your Bible,

but the Bible’s only offer of wisdom towards one like me,

is that my kind would be better off dead.

I died seven years ago, and was reborn into this…

great sorrow and suffering is my lot.

I am a puppet on the strings

of a world I cannot fathom.

I take solace in watching the trees moving gently in the wind,

I have my solitude, the rocking chair in the sunroom, the quiet repose of a quiet house, my resting spots.

The world dances on, and, free of striving, I find peace.

Deep are the rivers there.

I think that throughout my life, overcoming my fears has been the theme and the lesson to be learned, long before I had the illness. I’d say a large part of the social isolation, emotional salience, catatonic-ish behavior characterized with schizophrenia are part and parcel of having unresolved fears. I know I have mine. I feel like my illness manifests in full force during those periods when I withdraw because I’m afraid to face something, or feel afraid to naturally express my true nature around a person or people. It’s self-inflicted soul suicide. 

I’m looking everywhere for relief from my affliction, and am open and willing to try all things that might help. And so, I’ve been praying about this particular limitation that I carry with me, to not have fear in social situations or otherwise. The fact that I’m writing this blog, and opening up so much about this part of myself, is evidence to me that the prayers I have offered are working. I don’t profess one specific religious belief, but can experience the divine in my life through certain pathways, such as prayer and meditation, and that’s good for me regardless of logical objections. Keejay! (Victory to the Divine). I hope and pray that God has given me this affliction for a higher purpose, one I may never understand, I am prepared for that, and I pray that one day he will heal me from this illness. I don’t know his purpose for me, I can only say I cast my lot with the power of divine grace.

After I was told to try fish oil, I got online and did some more research on supplements that may improve symptoms of schizophrenia.

Glycine - studies show significant (30-40% in one study) improvement in negative symptoms. The drawback is the large amount necessary to achieve that result. Some have suggested that 10 or 15 grams a day to start with may be a sufficient amount to be helpful. Still, most health store pills come in doses of 500mg, so it is recommended to buy the bulk powder to achieve results. Still, that’s tablespoonfuls a day, and the amino acid can cause upset stomach and nausea. I bought the 500 mg pills first without knowing of the high dose, and have been taking a few of these a day, with some acid reflux-type reactions.

Folic Acid, NIacin, Vitamin B6, B12, VItamin C and E - Some studies have shown lower levels of these vitamins in people with schizophrenia, and some improvement has been demonstrated with use of these supplements.

Gingko Biloba - an ancient Chinese tree leaf that has long been used to enhance memory and cognitive function. It may work by increasing oxygen to the brain, thereby improving brain health. I’m going to give this one a try as soon as I can get back to the vitamin store, and will report back if results are positive.

Alpha Lipoic Acid - a powerful antioxidant, the idea has been floated that schizophrenics tend to have more free radicals and other toxins in their system, and some results have shown that ALA may help alleviate symptoms. New studies are being done on ALA as a suitable weight loss aid for people with antipsychotic-related weight gain. In any case, ALA is good for you because it reverses cell damage and clears the body of potential damaging agents. It can also give you more energy, a result I have found with use of the supplement.

D-Serine - similar to glycine, binding at the same receptors, d-serine is not available for purchase, and not yet approved by the FDA due to the potential for kidney damage, as yet unconfirmed in human studies. Studies are underway, however, viewable at www.clinicaltrials.gov, which are evaluating d-serine as a therapeutic agent to improve both positive and negative symptoms of schizophrenia. Early results are very promising for this amino acid.

I’ve gotten many articles recently in my inbox regarding the benefits of fish oil for preventing or reducing psychosis. Some new studies conducted on at-risk adolescents have shown fish oil to reduce the expression of psychosis, against a control group not given the supplement. I started taking a regular dose of fish oil (many sources, such as Dr. Bob and Schizophrenia.com say a formula high in EPA is best for helping schizophrenia) after reading these articles. The other day, however, I went to an acupuncture clinic and the doctor in charge there said I should take up to 6,000/mg a day to see the full benefit of the supplement in healing my brain. She said in a month’s time at that dose I would see “amazing changes” to my brain functioning. I’m excited to have something specific and proven to help support and heal my brain — I wasn’t expecting the fish oil to have the potential for such dramatic improvement to my condition, and I’m glad to know that these results were seen at higher doses (most of the studies were conducted with 4,000 mg/day). The doctor suggested I eat them in the middle of meals. I hope they help. We’ll see!

Another important consideration when purchasing fish oil is to get a brand that is free of PCB’s, mercury, and other metal contaminants from the ocean. One commonly trusted brand is Nordic Naturals, although any brand with a stamp on the bottle stating it is free of contaminants should be safe for long-term consumption.

I think it’s important to address the issue of a schizoaffective diagnosis versus a schizophrenia diagnosis. For me, the existence of schizoaffective as a category illustrates the continuum along which mental illnesses exist, between bipolar and schizophrenia, but also a sort of classism within psychiatry, or as Wikipedia puts it: “As a group, people with schizoaffective disorder have a more favorable prognosis than people with schizophrenia, but a worse prognosis than those with mood disorders”. A person’s prognosis, in addition to the doctor’s assessment of illness severity, includes levels of family support, the patient’s background, education level, and social and vocational skill sets. NAMI asserts that, “There has been a controversy about whether schizoaffective disorder is a type of schizophrenia or a type of mood disorder. Today, most clinicians and researchers agree that it is primarily a form of schizophrenia.” The criteria of having a mood disorder seems to me only a kind of red herring for doctor’s to apply this sliding scale of prognoses to patients (and too, schizophrenia carries much more stigma than bipolar or even schizoaffective, in a self-reinforcing cycle). When 30-40% of schizophrenics will attempt suicide in their lives (thanks for the statistic to a recent post by a new blogger, Dustin Demoss at http://dustindemoss.com/?cat=1), how can you claim that schizophrenics too do not have periods of “major depression”? It seems like a nonuseful criteria, given that so many “regular” schizophrenics have a high chance of becoming suicidally depressed at least once in their lives, if not for much of their lives as I suspect is more of the case. I’ve heard that the entire diagnostic category is in question during the current DSM-V proceedings, but I’m not sure to what extent. BTW, I’m technically schizoaffective, but I decided to name my blog MySchizophrenia because that’s what I feel is the real heart of my illness (the voices) - perhaps I could say my mood swings are evidence that I’m still in the fight to try to become well again, that I haven’t given up and resigned myself to the illness. Plus, schizophrenia is the more universally understood term. “Schizoaffective” always requires a cumbersome lengthy scientific explanation and diatribe on modern psychiatry!

I’ve been doing Paramahamsa Nithyananda’s daily guided meditation, Nithya Dhyaan, for about a month now. It consists of five parts in 35 minutes — chaotic breathing, humming, chakra awareness, witnessing thoughts, and gratitude practice. The idea of the chaotic breathing is that, like a tree in a storm, the dead leaves will be shaken off. Similarly, this first breathing exercise is designed to shake up old karmic patterns (samskaras). Nithyananda writes, “You have to create utter chaos in your system to dig out all the past impressions… All the past engraved memories will be released”. The practice also hyperoxygenates your system, thus activating all parts of your being and bringing greater life into the cells of the body. The purpose of the humming exercise is to unite body and mind, and quiet the thoughts. For the chakra awareness, the idea is that being aware of these seven energy centers in the body will help to clear blockages and bring energy and bliss to each energy center. Nithyananda writes, “The samskaras are present in our being because of the absence of awareness. So when we flood awareness into these energy centers, the energy centers start getting unblocked from negative emotions and we start radiating positive emotions like love and compassion.” The object of the 7 minutes of thought awareness is to become what Nithyananda calls “unclutched”. The idea is that we create our suffering when we connect thoughts together into stories or what he calls “shafts”. We cling to these, when our original nature is for thoughts to arise independently of each other, “like bubbles in a fish tank”. When we are able to unclutch, or disconnect our thoughts, the space for bliss to arise is created. Finally, the gratitude practice helps to cancel out discontent, and helps you to feel connected to existence in a profound and blissful way. Overall, I believe the meditation practice has been very helpful, specifically in helping me move past my resistances and blockages and fears and reservations about living life to the fullest. It has also unlocked in me greater love, compassion, and a sense of great peace and stability. The chaotic breathing and humming drops me into a space where I am able to meditate more deeply than simply sitting down and going straight into breath awareness. It quiets the thoughts, and opens up a space for you to feel bliss and great peace. I’m thankful I discovered this practice, and intend to continue practicing it daily.

The Saphris began making me extremely drowsy and overly sedated, such that I wasn’t able to take it any longer during the day for fear of falling asleep and missing appointments, as had happened. The phenomenon of sudden, inescapable sleepiness is one I have experienced before on Geodon, and which necessitated me stopping that medication as well.

So, at my last psychiatrist appointment, I requested to be taken off the Saphris; we settled on Abilify as my new antipsychotic, as I have been on that medication before with no major side effects. Blessedly, the terrible anxiety attacks I had been suffering for the past three months (the duration of my stint on Saphris), ceased immediately once I stopped taking the Saphris. So, I can only conclude that the Saphris was the culprit of those dreadful spells.

Now, some semblance of normalcy has returned to my daily existence, and I am able to feel once more in control of my day and my productivity, limited as that sometimes is. Another observation from this experience is that life became extremely painful and nearly unbearable when I had to reduce my dose of Saphris to only evenings. With the Abilify now on board, the sense of despair, pain, and existential fear that I had been feeling without adequate protection from an antipyschotic, has gone completely away.

There are a lot of voices out there on the internet, and indeed, in my own life, that believe medications are unnecessary, and ultimately harmful. But I think I have to side with my psychiatrist, at least from my current vantage point, that the antipsychotics do seem to have a neuroprotective function, and seem to keep my lived experience within certain protective boundaries, saving me from the nearly unendurable pain of living without them. In short, they make life bearable, and enable me to live a more or less normal, albeit limited, life.