Schedules, No Meeting Times Available

I’ve been trying to get myself into a routine, one that I can follow daily, to feel as though I have covered all the bases and perhaps even made some progress. No wait, that last part is missing. I haven’t been tracking my progress on anything.

Wake up. Walk dogs. Drink coffee, smoke. Take a long walk with the dog. After that the schedule slips and each day it changes. Run errands may come next. Sometimes it is Make Dr. appointment. Whatever happens next, however, is sure to throw me off kilter. I get caught up in hearing. I get side-tracked by taking care of myself: Shower. Eat. I have a lot of time on my hands, so I decided this past Friday to exercise and take a five-mile walk to and from the park. I wasn’t physically ready for that and I ended up limping the last quarter-mile home; with a Charlie Horse in the calf, I’m out of commission for a nearly a week. Back off track. No routine, no schedule.

With too much time on my hands and nothing to interest me, I decided to alter my routine another way and get really high while I talked to voices before I went to bed. I don’t usually get high, but I had a small bud in the canister and it was enough for me to feel altered and relaxed enough to sit for a long time and have a chat. Mind you, I listen all the time, and I can’t help but hearing, but I had a special invitation from a manly spirit to get some spiritual business done. I stayed up until 3 am and all I remember are my two commitments to quit smoking: one by the end of this week, and another within three months. I don’t think either will happen.

Little spirits, I love you I love you

This morning, late morning, I decided to take myself out and get away from the house. On my way is my old place of employ, and I reminisced about the days when I used to work. Burger and fries later, I found myself at Bed Bath & Beyond shopping for some needed items, but I was too impatient for the broken register system to be fixed in order to check out. Leaving everything behind, I decided I can shop later. I have time, a lot of it. Being productive at work AND living a life — you realize how much extra time you have when you get a long weekend. It isn’t like that now for me. Being off work for nearly three years, and it seems I have no time for anything while having all the time in the world. I can’t even get my daily walk in. Its frustrating, but I guess that’s why I am on disability to begin with.

Write just before Go to bed. It is me trying to lay stake and claim the last bastion of hope for my sanity and self. Maybe I can make a schedule around my lingering dreams, my goals. Maybe I can tick off tasks and track my progress on something bigger than my day to day worries and troubles.

 

2016 Brings Full Disability

After my harrowing adventures in Kansas (e.g., Three-fisted Punch) I spent the remainder of 2013 and most of 2014 experiencing psychotic break after psychotic break. I landed in the hospital in the Summer of 2014, when the cops were called because I was talking to myself on the street (well, I was really screaming to myself and the voices, making quite a scene). My break was complete this time, as I couldn’t stop talking to myself even in the presence of others. Hospital staff took note and I was oblivious. They started a Disability Application for me, and ushered me through the process as I sat unaware. I stayed for seven days, unconcerned. I’ve heard that the disability process here in the U.S. is quite long, where most of the time is simply spent waiting for your case to be heard by a judge, and I can verify this now through my own experience.

My case was finally heard in late March, with the Judge declaring in the hearing that she ruled my case, as they say, “Fully Favorable” since the date of onset – which was my November run-in with the Kansas State Troopers. It is from this date that the voices I had been hearing only during psychotic breaks has persisted even though the psychosis had ended. I have been trying a variety of meds thanks to my doctor, but none as of yet had impacted my auditory hallucinations. I’ve been out of work, also, since November 2013. It will take another two months before I am fully in the system, receiving payments.

Living with my mom now has helped more than I would have expected, and I enjoy the company after living so many years alone. Mom’s presence keeps me going to bed on time, eating three squares, and staying closer to home. I’m not sure why my writing has fallen away, but I suspect I’ll catch up here this summer with new tales of adventures and commentary on my condition and the Social Security system.

Thanks so much for following along.

2015 in Review

2015 was a good year in some ways, and not so hot in others. In 2015 I saw a new diagnosis and with it, a new set of medications that actually help. I’ve been diagnosed as Bipolar I Affective disorder, which (for me) looks like a series of psychotic breaks with mania: delusions, hallucinations, disorientation. Although the medicines haven’t touched the audibles (note: auditory hallucinations) the Pop! Pop! Pop! of psychosis — which is the most destructive — has been allayed, so I’ve felt a sort of stability only hearing and not being driven mad by the intensity of sudden and frequent breaks from reality.

I closed my Twitter account because the voices are more conversational now, telling stories and figuring out mysteries, in a manner that isn’t really conducive to convey as a string of single tweets. Tweeting what I heard was helpful for me at a time in my life, and for those who were reading me, i think it helped them understand, too, that hearing hallucinations is different than they’ve expected – even the seasoned veteran doctors signed on to see and “hear” my tweets. I thank you for that.

I haven’t worked since March or April of 2014 and I haven’t been writing, here or otherwise. It’s a good habit that has fallen by the wayside that I think I’ll pick up again in the coming year. Retiring this blog has been a thought of mine on more than one occasion, but there is so much of me and so much information I would hate to idle. This year may see additional posts here. I am also thinking of starting a new blog about my meditative and spiritual interests.

Finally, I think I am going to give up my formal domain and simply use the free offering here on WordPress, because It seems I never have enough money when domain registration comes around, leaving my blog locked in limbo for a while. I hate that.

What next?

I don’t know. It is a lot of random thoughts of my trying to sort and organize through the past year and this outward-facing material representation of where I am, this blog that has been with me through critical times in my life, helping me to capture and track some weird, terrifying, strange, and wonderful experiences. Plan to see more of me this year.

For now: Ta Ta and welcome to the New Year!

The Lion

He comes in with one voice and changes to another. I know when he’s here because the other voices grow quiet. He’s different than the others–he’s a sorcerer in and unto himself, but he’s hurting and not unlike The Lion and The Mouse, he’s looking for relief. The fix that will cure all comes in the form his of masterful magic that would pluck the thorn from his paw.

Typically on any given day he can be heard scaring all of us with real threats of sugar that isn’t sweet. He’s a good Lion roaring his discomfort and the whole forest trembles when they feel his wrath. He didn’t used to feel like this, but he’s not himself. His domain of magic reaches far and wide, he surpasses nearly everyone with his strength.

My problem is that I hear them all, like a channeler talking to the other side and just beyond the veil lies a vast territory. There’s a history of story tellers throughout the ages, and that’s how I feel now, like a bard with a lyre. I listen to gather the tales and try to distill it down into a manageable story.

Magic is a weird affair and explaining it is even stranger; some people do have true magic and I think Spirit has brought me to this place in life to understand the inner workings of the events that brought me here. Conditional circumstances aside, I hear him, this spirit, lying in wait for this asshole in the world who has managed to get himself in the way of everything that is good.

I’ve never imagined that there are spirits, entities, beings (whatever you may call them) in the world, waiting, waiting for their chance to pounce. I ‘ve never expected that I, myself, could find myself as one lying in wait as well.

Annnnnnnnnnd… I am back online!

So, these past two months my domain was down (unbeknownst to me) and I was psychotic (again) but I’m getting better answers now about why I keep tossing ill. WordPress was exceptionally helpful in my getting the domain registered again, so thank you WordPress!

By boring account, I was admitted to the hospital in mid-August, where I stayed for a week. During that time I’ve been signed up on government health care for the impoverished (Medicaid) and had to switch doctors. My last psychiatrist started thinking I may be bipolar instead of schizophrenic because of the odd nature of my recurrent psychosis and periods of full-functioning in contrast and the lack of correlation between my med compliance and recovery, or lack there of.

Current theory (since I had to get yet another doctor under Medicaid) is that I have Bipolar I with psychotic features which is to say, instead of being HIGH or super-productive, I just flip severe psychotic, blowing right past all the touted “benefits” of being bipolar. My cycle seems to be of the slower-cycling nature and, if I recall, the doc said this is harder to manage long-term. I’m now on a numerous meds to try and keep the next cycle from occurring, or to slow it down enough to catch. Not sure why catching it will help when the meds I’m on are supposed to prevent it altogether – isn’t that like saying we’ll use the meds you’re on to try to do the same thing? (That is to say, if it is prevented by the meds I am on, I won’t need to use the medications to bring me back down, and if the meds don’t stop the onset, we’ll use the same meds to try and squelch it.) Not being smug, but I’ll have to ask the doctor some more poignant questions, none of which I can ever think of at the time.

Since Thanksgiving 2013, I’ve gone psychotic three times, and if I count correctly, there’s been a total of nine cycles of destruction since the big block buster, two-year long psychosis I experience at onset.

The most frustrating aspect of this all is the stigma and the FALSE assumption that I must not be on meds if I am sick. Wrong on so many levels. To start, lots and lots of meds don’t work for people the first try, or even the second try. Second, that ONE TIME I was off meds doesn’t mean it’s my current behavior (truth be told, I was running my own experiment). Second, it doesn’t sound like this could have been better diagnosed. A pattern has to emerge, and, furthermore, there needs to be continuity of care.

My own experiment, eh? What’s that about?

In all sincerity, I thought I had this licked while–at the same time–I intuitively knew the meds weren’t working the way they should. Maybe it is better to say I thought it was over, that I was done with being schizophrenic. All of this, of course, is not ignorance or obstinacy, but denial. I just can’t admit to myself that this *may* be happening for the rest of my life. How do you plan for that? How do you plan on being totally incapacitated five to six months out of the year? You start buying a lot of art supplies, that’s what you do.

The continuity of care in our medical system leaves much to be desired. Initially I was on state-funded insurance, when I first became ill. When I became better and was able to work and get my own insurance, I had to move to a private doctor under private insurance. Even while on state care, my doctor changed several times. I finally found a private clinic with an associate Behavioral Health Unit hoping that someone would catch my symptoms and hospitalize me before something really really bad happened. Lucky shot there, for what resulted is that finally one clinic had notes for different events and they were finally able to see the full spectrum of behavior, from capable business woman to babbling fright. Although I changed doctors three times at the new clinic, they each read the prior doctor’s notes.

What has been helping also (and I am more than a little ashamed to say this) is that I’ve had my mom go with me to my appointments under the theory (more experimenting here) that the doctor would put more weight on what she said than on what I said, being a more-frequent observer of my condition. So, it helped.

And, while I say that, I’m banking on the new diagnosis and the fact I won’t go psychotic again (I know, denial) or that it won’t be quite as bad as last time (more denial).

Native American Visions

When I took my 17,000 mile road trip in 2008, I called it a “Shamanic Car Quest” upon my return. The phrase summarized my experience: being thrown into a world full of meaning, or a search for meaning in a sea of meaning, though it was all about the modern world. I’ve never written about this trip, except in passing. What I will say is that my experiences with psychosis, now ranging in seven breaks from reality (really, I’ve lost count) seem to be distilling themselves into a more concise story. It’s a story of Fact and Myth.

Let me begin by saying I am 1/16 Lakota; my paternal grandfather’s mother was 100% Lakota. When my great grandmother was young, Native American children were separated from their parents and sent to Christian schools where they were stripped of their identity and given Christian names. Around the 1920s, it was shameful that one be Native American here in America, and my grandfather’s siblings all shunned their mother’s ancestry and never spoke of it. The only person interested in the religious aspects or the culture of Native Americans was my grandfather, whom kept meticulous and rich scrapbooks from his youth.

So, in short, this is my family history. I say in short because there is a lot missing to the story.

This past psychosis in May I started hearing nature sounds (aside from birds talking). One day, while driving by my grandfather’s old house, I started to hear a huge swarm of birds as I got closer and closer. I rolled down my window to figure out the source of the sound, because it first presented as a beautiful, loud buzzing or stirring of the air. As I passed each alley, the sound of an active flock would swell as I approached and shrink away as I passed the next alley. This continued for at least a mile and disappeared one or two blocks past his house. At the time all I could think was, “What does this mean?” Unable to come to an answer, I went home and continued on with my day.

Other, strange events have been happening, like hearing mice in my ear or hearing the wind talk in the trees. The nature sounds are a sharp departure from the motors, fans, and fridge talking. For one, there are no words (obviously) and two, these sounds are easier to hear over the long term.

As the story goes in my head, this legacy of magic has skipped a generation will now only go to the women in the family because the men misused it, which is part of the family history I passed over. Part of what I am hearing, for I am still hearing voices as well as noises, is that it is best not to talk (even think) about the mundane aspects of life while walking in the spirit world, or as Western Science would call it, “while I am delusional”. There are practical aspects as well because my mind isn’t altogether functioning in a strait line. So this thinking then led me to the saying in my prior post: Live Your Myth. Walk Your Reality. It is still necessary to take care of my day-to-day chores, I just should not plan or fret about daily life during this time.

Another theme that was prominent in this “psychosis” (and I put that in quotes because I am truly questioning the nature of my experiences now) was to not spiritualize events, but to allow them to be as they are, experiences. The idea being is that the shaman walks the spirit world all the time; the shaman lives her myth.

Some schizophrenics develop detailed delusions with overarching themes, so this could all be viewed as the continued degenerative nature of my disease. Part of this, however, is foregoing the Western explanation of events. I don’t feel I am degenerating, on the contrary, I seem to be more grounded. I am going to try and live my experiences without the encumbering (or dismissive) explanations. “Oh, that’s a hallucination.” “I’m delusional.” These sorts of self-reflective definitions seem limiting. At the same time, I am going to continue on with my medications and treatment and not throw myself head-first into unreality because, quite frankly, I disconnect quite easily.