The time has come

Hello . It been a while since we’ve met here. Please come in and have a seat. I’m going to put on some music and join you.

I hope you have been well. Things here in the land of Parkinson’s, prose and paint haven’t been that great I’m sorry to say. It’s been almost 10 years since I was diagnosed with Parkinson’s, since then as most of you know my life as expected has totally changed. I’m not going to go into depth of the story right here right now. Please feel free to read me in my journal (s) here. Needless to say I’m as far away from the life I all my life for as I could be. It kinda feels like I’m a baby boy again getting passed around the relatives , anyhow . I’m almost 50 which is a mind trap all together because I’m pretty sure I’m like 30 something still.

Anyhow here the real point. I have started the process of Deep Brain Stimulation Surgery. Otherwise known as DBS. I will try and address as many of the questions I’ve come across here as possible.

I’m having the surgery because I’m at the point where I have maxed out my meds. The side effects of Parkinson’s medication are very very extreme. Just as extreme as the disease and just as hard to manage. After doing really the best I could would the real life support I had. **Sorry online guys I love you but the real life impact is kind void** the medication just isn’t doing its job. So the hopes are that the surgery will give me the chance to take less meds. Because most of the work of the meds will be done with 2 implants in my brain and 2 power packs implants in my chest. I’m having this process done , hopefully I can continue to be alive. The surgery is effect. The surgery on the same hand varies from patient to patient and is highly risky. The surgery will not cute my PD, it will not make me better or not disabled. But it will keep me here for a while more walking and talking.

At this point I have a Neurosurgeon, I have a Movement Specialist Neurologist, outside of OHSU and just today I got a call from the person who works for the implant company. It’s pretty cool , very science fiction.. She will and already within one phone call started to help coordinate communication between the various medical teams and people I need to go get tests from ect. Certainly not something at this point I possess the executive function to manage, but that’s a story for the journals. So in short that’s what’s up. It’s pretty terrifying to be honest to be this far along and still not feel like I have solid home. Not that I don’t love the mountain house but it again isn’t anywhere close to what I had planned. My ex wife gladly took all that away from me years ago. Honestly I thought I’d be stable by now but doing Parkinson’s with immediate family or a loving partner I’m finding is literally impossible with destroying your life. Oh and cancer I had no idea you expect. I wasn’t going to let the cancer kill me but was not prepared for the after effects the radiation and chemo treatments. From there I made some bad choices in people to take care of me . As little as I realized but I was in really really bad shape both mentally and physically. I wasn’t capable of making start choices because Parkinson’s had taken my ability to do so away from me. ***People will try and argue that I was there I knew exactly what was happening, well. I did but my brain no longer knew how to effectively, safely and in a manner that any of you out there will ever understand. When your brain doesn’t have the chemicals it simply doesn’t work right . So get educated and stop being judgemental bastards . Sorry had to vent.

So here we are 10 years later and I probably should be dead but I’m not and I’m going to give all of this one more shot. Deep Brain Stimulation Surgery. Soonish probably March, April if I’m lucky. I really don’t want the surgery in May because both my cousin, grandmother and dad all died in may plus it’s my birthday so. No jinxs. All righty then that’s about it for me. Sadly I haven’t slept today. To much on my mind , hahahah with surgery and dealing with emotions of being single still and fearful of dying alone or in one of those horrible homes , just so y’all know. I will NOT go that way. Okay?. Sad it’ll be me who decides how all this ends before I let PD put me in a home. It’s been nothing but I literal walking hell since I’ve had PD . I’ve met a number of angels though not a single one of them is beside me now. And I would never out anymore burden on my momma than I already have and since the family I made bailed …. Ya, what other choice would a warrior have . But let’s not worry about all that shit now. I’ve got to continue to gain strength for the surgery. My meds switch is being effective in some ways not in others. My clarity of judgement is a little better though my agnosia makes it impossible for me to situational perceive things correctly all the time. My body and other bits are far worse than they have been in well ten years. On that note it’s 228am pst I’ve been up for a day already and I’ve got a huge medication off appointment on Thursday… Things are sleeping up very very quickly. Before you or I know it I’ll be a robot…. That about all I have to say. Be well , take care, I love you, I miss you… And a little reminder to all those whom I mentioned in a that ranty Facebook post. Im writing a book and well, you’ll be in it.

Alway b2020

Once I wrote a word or two… Then more came to at hello.. these are for you.

Into the vast abysmal plane I cast gaze for a thousand times nine times ninety nine millennia.. Waiting, watching, wanting for something else, something, someone a soul to hold close and dear just once more.

Back from the darkest place you’ve ever been I have returned. The coldest places in the human soul past our hearts and minds, past the fluffy feel goods of our conscious mindful soul… To the places we hide in as children, to darkest hiding cubbies in ones soul. This is where I’m found , home to know one home to me…

Then a glimmer of hope.. So far away.. I dare not dream of a day this rock will bare the weight of another soul. A purpose for which I have been assembled through the years of failures and tribulations.. Yet I remain, still full of fire, still unquenchable in desire for life’s sweet embraces. Forever haunted of home…. Home, this elusive place in my heart where once I lived. I was kind and generous there. Abundance thrived and we thought we were whole.. yet I was not , I was broken beyond repair of what I knew., And I knew nothing .

Now we sit here gazing across the world and the spaces in-between wondering what do we do next. How does this door open and close , how do we not shake in fear and arresting motion for the panic of the unknown tender heart that cried for forgiveness in the darkest of rain soaked nights . Now are hearts bleed again , the low thump, thud of a angles broken heart, wings beat in the invisible ethers of the hopes hell. Waiting for forgiveness to give way to this hearts pain. Love not the beast that Iv become but the man inside that takes it eachday for I love you more than this heart could ever bare to speak in any tongue…. Good night, I hope you hear me. Benjamin M Prewitt

A long way from home.

Every time I think I’ve rid myself of your bitter taste, I find you linger still. Failing each attempt I flee. Heart races as wings unfold all mirrors are broken now. I can’t see my face or yours. Everything is numb , I rarely know what day it is… Sadly I don’t care , I’ve no reason to.

Words written with a mind flight and broken soul. Left to wander as it has always been. Finding bits of myself hinding under rocks and worms . Tis the season of joy I’m told, as I reflect on years gone, bye. Softly they all fade away as I’m sent flying again higher further and further way each time . Fearful of the time I leave as each passing moment there seems less and less of me to come home to.

Always Benjamin.

*Words written because they needed to be. Not for you , just for me. Verbal waste from me.

Just to say hello

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#workinprogress #myartlife B.

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Soon I’ll be coming back here 4o write more. It’s been a long road since I started this blog, in the begining I still had a job, a wife and kids, a marriage and home. Now and since then I’ve lost everything, all my possession all my history of even being alive on this planet thanks to some horrible turns of fate . Oh and then there’s the two years of wasted life in which cancer treatment and recovery happened. There in which I seemed to lose track of everything literally, my stuff, my son, my home everything id tried to save from my marriage theater my ex didn’t keep or throw away. Any how I’m alive ,kinda. I’ve no place I call home anymore though my life is good. I see beauty and life all around me daily here at the mountain house. My Parkinson’s disease progression has increased hitting ten years seems to be a magic marker unfortunately and it’s depression and anxiety is unimaginable and sadly untreatble. So soon I’ll be writing here again because with next to no body around me other than the dogs I’m settling in to a much much slower life . Still no companion I’m being realistic.. ive got maybe 5-6 years of walking left at best and 10-15 yrs if I continue at this pace. Who knows thought I could be the one i beat Parkinson’s lol. Nothing else about this experience has fit the standard mode . Much love and light.