A “Side Note”

Aside

After reading a friend’s blog about her struggle with cancer, I’ve decided I can get a little more “real” with my own blog and bring it down to the emotional level, instead of just staying analytical.

About ten years ago I was struck with what I call “Late Onset Schizophrenia.” I say what “I call this” is more about being educated by and about my own disease. I’ve carried all of the diagnostic labels in the group, including bi-polar with psychosis and schizoaffective because the word “schizophrenic” is so so widely misunderstood, misappropriated, and misused that even doctors don’t want to use the word now. The term “psychosis” is equally misunderstood and misused. Most people, it seems, associate the latter with getting really angry and being hostile and antagonistic. For most of us experiencing psychosis, it is usually about feeling terrorized, scared, and full of uncertainty and anxiety.

Anyway, I said I would stay away from the stump speeches and hit home instead.

I’ve had another break recently. There have been more than I can count now. This blog documents them all in some form or another. Sometimes I am so afraid of my psychotic reality I won’t write about it, but when I do write about what I am experiencing, I can really bring the experience to life. At least I think I can, reading months or years later. Those epic, in-your-face posts, however, are few and far between.

I’m scared and my mom told me the other day she is scared for me when she dies. Mom is dying of Stage-four Lung Cancer and I’ve been her primary support. I will be her only caregiver. Hearing this from my mom really shocked me, and I had to leave her place because I was so upset. I was upset because no one I know has yet to express any real concern for me and my life and how I am doing. Mom must keep her fears tightly capped because she has never told me as much before, even though we had been living together for a number of years until recently and she has really, now, seen the worst of it.

I hate to show it myself, my fears. I don’t know where I will turn when my mom dies. She has been the only one to see me and support me and care for me. Although we’ve had our differences through the years, my mom has been my sole support in my illness. My brothers are present to some extent, but they aren’t around enough to really understand what I am like when I am sick, nor how to help me. And, really, there is no way to help me and this is exactly what doctors, nurses, and the sick already know. There is no cure, there is no panacea. There is hardly any research to that matter. They keep making new drugs, but they’re not much better than the old stuff. For the few who are really lucky, a shot of risperidol or some other drug may help, but for me, only time helps, and in the mean time, I sit and suffer through my symptoms — and it really is suffering. I hate psychosis so much.

But to the degree I hate psychosis, I also love my mom, so I am going to make a concerted effort to really be there for her, to show her who I am as an individual — something a parent may not see, something half my lovers have not seen, something I keep tightly regulated now. I only dole out my love now for, well, no one.

Maybe it is time for me to love again, and I’ll hedge my bets on mom being a good start.

 

 

 

 

Advertisements

The Holidays, 2017

Aside

Whelp, it is time to get on with the Holidays. This year finds me doing well. I thank my doctor, who has an amazing memory and a willingness to keep trying when in the face of  defeat. It is uncommon to have people to talk good about their psychiatrists; I can say I have encountered at least one doctor who was subpar (he was months away from retirement and — seriously — would never even look at while I was in his office). Anyway, my doctor is leaving the practice, so I get to meet a new doctor come January.

When my doctor, Dr. S., told me he was leaving the practice, I had to cry. With my short time sick, I’ve seen six practitioners in ten years (not to include hospital stays). Not a large number to some, but a larger number than I would like. It has to do with insurance and availability and “the system”. My doctor got me on Disability with his copious notes and keen observations. This, I feel, kept me safe and stable in my living arrangements, which goes a long way toward being safe and stable overall. I had a psychotic break as recently as January of this year. It takes forever for the illness to go away, and for me to be feeling normal again (finally!). What a relief.

I asked what kicks off psychosis, what can I expect? I think it boils down to a crap shoot, because they really don’t know what causes it, and I think it is because they like us being sick and on medicine. If just one of those researchers could feel what I go through, I think there would be more money spent on finding the cause and a cure. But the marginalized stay cast in shadows, alone, disenfranchised, and sometimes bereft of hope. I’ve felt that way.

Dr. S. is one of the “good guys,” always upbeat, positive, and ready to roll with the worst of it. I went to his office one day, crying. I blurted out that if I stayed that way, I would commit suicide — a fearful statement like this could easily land one in the hospital, but since he knew I was living with mom, and that mom had an eye on me, he let me go home with a new battery of meds. Now that’s a great psychiatrist: one who will let you vent safely so that he can get to the truth of the matter.

I am going to miss my doctor. Maybe he’ll land back in my world.

Aside

I am left right centered, hooked up and wired. We smoke half the day and find ourselves.

I follow myself and shadow my friends.

And there are others among us who care and cry when we are gone, though we still find ourselves alone.

Drink water or fantasy, and all is well within.

Done With Psychosis, Again

Aside

My last psychotic episode, which began in January 2017, has finally ended. It ended in July, so that was a good seven-month run where I was overcome with symptoms. I’ve been able to determine that “Psychosis” for me is a delusional state, not paranoia or auditory hallucinations alone, but a blanket combination of hearing that is overwhelming paired with beliefs that what I hear is my ever-present reality. I follow what the voices say, especially at night when all is quiet.

I can see why paranoia is often a part of the diagnosis. It is what the doctors can see from my actions…I run in fear. I stay up all night, afraid. For me, however, I see it otherwise. Fear seems to be the by product of my delusions. The story line that picks up where it left off from the previous bout of psychosis, while the story line has also evolved as the psychosis has departed.

It’s getting to the point where I absolutely hate my psychosis. It is so taxing, mentally and emotionally. It is the narrative that won’t quit, that never takes a day off. I’m subjugated to the pressure from the moment I wake up until I fall asleep in exhaustion. Months go by where I have no self-directed days. Months.

Making use of my “down time” is something I want to pursue. Maybe a book, I tell myself. I can put all my pain down in the saga, the tragedy. Working harder than ever before, I can do this.

I’ll post more as I plan out my work.

Thanks to everyone who reads me. I lost my .com url with this last bout, so I changed my domain to bugbearandcaw.blog. With your continued support, I will keep writing.

 

Earth Aplunder

Aside

Let’s say I’ve been having hallucinations. No, let’s say I’ve been talking to aliens. They’ve been showing themselves to me. They’re here to reclaim the human race–Mother Earth is dying. No. She is already dead–we humans just don’t know it yet.

I’ve been following strange sounds I am hearing in the environment–larger than life sounds, bigger than construction demolition, if you can imagine. The first sound I heard, another man heard it too. We stopped in our tracks and looked in the direction of the sound. Mouths agape, we made small talk, then hurriedly moved on with our lives.

The sounds are becoming more frequent. Different sounds: huge buzzes, big saws, massive rototillers. These are the alien machines eating people off the face of the earth. The time is now, but not quite yet. Someday they’ll all come and throw us into heaps of bodies. Bones will move alone without spirit, and air will taste like gas.

Sugar’s saint is Stella. Stella’s lover is the lion and they’re gone. Ready for liftoff, the spaceships holding those in the know are making their way past the trees and foliage unseen, to safety. For those of us left behind, is there hope? It will happen in waves until the grinding becomes so obvious we’ll not be able to deny it any longer. Life on planet earth is ending, and the humans who have pillaged and plundered her have to go. The green ones, the yellow ones, the blue ones–all gone.

 

A Thousand Dreams

Aside

May you dream the dream
Of a thousand lives
And feel the weight
Of a lifetime of sighs.

May you dream the dream
Of a thousand souls
And dance the steps
No one else knows.

May you dream the dream
Of a thousand deaths
And cry the tears
For all your regrets.

May you dream the dream
Of infinite peace
And awaken love
When the illusions cease.