Sneek peek of works in progress and lots more to come
Sneek peek of works in progress and lots more to come
Today… It draws closer to the time of the year again where I miss you most of all. The chill comes to the ground again as the leaves have almost all gone. Every Sunday for years you were mine, now I’m not even sure where you are. Sadly life wasn’t what we thought it would be. Nor has it been ever since. The Parkinson disease came and changed it all. Then cancer came and scared you away. In this life i feel ive done it all. No the dieing time has come. God or Allah, Krishna or Buddha and Gai,whom ever name you use in honor your faith has begun to take all of it away and that which hasn’t been taken im giving away freely. I’ve been humbled completely i have a roof a bed and some health insurance.. Bankruptcy looms as Cigna takes their sweet time turning what was one of my worst nightmares into a reality. Shame on they’re houses. I’m tired and I’ve lost hope. Slowly im trying to just breath, cant pay the bills, just wsiting dfor life to finally consume me whole and spit out the bones and ben done with me. I wish i knew what path to take
Agnosia and Parkinson’s Anxiety have start to settle in the Agnosia being the largest hurdle I’ve met yet with PD… Imagine every choice in your life being taken from you. Nothing feels anymore its all grey or gone no joys and hatered… Just grey piles. And piles of grey emotionless pain… I know its pain because i can see it in their eyes. Your eyes looking at me as i change… As this disease blinds and drags me through time. All I have is faith now. I saved by an Angels when i was young, saved from drownding, then again as a teen, so many times. Freezing to death and car crashes. Cancer as an adult. Now virtually friendless and unforgiven by many who would rather judged than do their homework. But hey its okay right. I’m just another human male. Broken and useless to a society that lives on looks and money. Both of which for me are fading or in jeopardy.. This life has given so much more than it has taken for a man can not live on memories alone especially with PD. Parkinson’s disease only takes. It changes daily and crushes my soul and body relentlessly. I have grown tired today.. On any given Sunday you could have shoukd have been with me.
There are times in this life where i feel so isolated in this disease of Parkinson’s. The internal tremor that rattels my bones to the core each day. The rigidity that binds tendons tightening muscles in constant motion either inside or out, all held together by an invisble fog that binds only me and my mind to the shell of man i used to be. No time to adjust to the new me as it morphes again taking larger pieces of me with it each time.
Finding in these mornings most glorious and dark at times. Waking eachday with an ache so deep in my body, as if my very soul resists kicking and screaming as the relentless mass of parkinson’s disease bares its weight on this body and mind. Yet here i sit.. Watching in moments of clarity and depth. I weep as the pain in my hips is unbareble, hands tremble as shoulders heave in dystonic cramp. Tendons bound and wound so tightly as they twist and turn my feet and hips with torturous strength.
Ah yet i breath i find peace in the knowing.. The knowing that i am just one part of all of all of this beauty in the struggle of human life. This body, this construct of time and fear. Of math and metrics measured in sunsets and darkness, flowers and trees… Hopes and dreams..
Only then as i master this mind this soul. Slowing rejoining the light… Can I breathe as i watch the world around me react is i die… As i slowly need more reminders of what day it is or what the universe of doctors and vampires have instore for me. Slowly as these morning thoughts come to a close..
Please remember I’ve always loved you. Follow your heart for it is more pure than you know. Listen to your gut for it is wiser than you think and take care with your mind for it needs the time to ingest the magnification of lifes endless choices in this lifetime, but take head never stray from the path of light or one will spend a lifetime returning to it.
Benjamin- 2017 #myshakylife
“Be brave, be bold and thrive in the life you have.” ©2012
Small things lay at my feet as step through life.
Small things that turn huge if not handled correctly.
Cancer is one of those things. Parkinsons to me is nothing. Love is not a small thing obviously I would imagine we all would agree. Then why if love is such a huge thing to humans do we run from its power and magnetism. We deny ourselves half of the human emotions we feel bc we think it the right thing to do then we sit and wallow in our misery and wonder what’s wrong. I’ll tell whats wrong is half of our lives we spend dreaming of things that we are to afraid of doing . Well no more I’m so tired of trusting, loving, putting faith and expectations upon the world and having them dashed upon the rocks because someone else loses faith. I can’t control nor can I worry about it. I can’t make a person love me, nor my son call return a txt like he’s not 17 lol and full of teenaged boy stuff. So I’m learning to be what I call cold hearted but I guess the rest of the world calls it self centered. It’s not easy because being a very sensitive empath I feel way to much and all I want to do is gain acceptance through service big life moment right there. But it’s true. I digress
It’s funny but for those who know me , I mean really know me. Truly see the irony in this point of my life. Me: goofy .emotional,host,counsel,very social, flamboyant even. Now…. I haven’t even used my human voice today besides to take a video. I’ve no daily companion nor weekly companionship. I see nobody, I rarely go out. I’m isolated and lonely and for those who know me know that this,
This life right here will kill me quicker than cancer lol. Fuck cancer. I’ll take my Parkinsons and hit the road lol. Today I find frustrating. I’ve a lot to do and zero energy. My pain level has been spiking at 7-8 and well I’m kinda grumpy. Tomorrow is also kind of a big day. End of life planning day. Woot 🌊🌊🌊 yeah not so stoked about that, but really honestly as it is to talk about it needs to be done. Chemotherapy and radiation therapy is dangerous stuff and there isn’t any sure fire way to say that I’m strong enough physically to handle it. Mentally no problem, my mind has already been through living hell. I’ve faced physical death before it is what it is. But the destruction of the body is a very painful process and to get the cancer they have to destroy a ton of healthy tissue in a very sensitive part of my neck. So yeah tough day. Sore body preparing mentally for tomorrow paperwork, emergency lists,contacts. Then Tuesday…the day that kind of maybe changes everything. Pet scan. If the pet come back with just the cancer we expect then treatment will commence as mentioned in previous posts. If it comes back with more cancer in more places.. I’m not sure what I’m going to do. Sit being honest with myself here as well. Sorry you have to hear these things (remember my safe place)
I’m surprised today though usually I’ve a lot of anxiety and today has been mellow. Mostly just managing the pain keeps me occupied lol. Any how thanks for the chat. What’s the opinion of a YouTube channel.? I already have one but I think I’d like to start doing video blogs. The typing with Parkinson’s is getting hard and the videos would keep my hands free. Now after cancer I might not have much of voice so being able to use a button mic might help that. Well I’m going to try and do one thing today. Th dishes 😱😱😱
I hope you all know how much you mean to me. Truly some many of you are lights in the darkness of my life I don’t honestly know if I’d made it this far without you.
As I lay me down to sleep I pray The Lord my bones to keep.
Wrap them tight in angels wings gossamer and silver thing.
Can you hear the trumpet sings how it calls and braes like wild things. Such times desire of loss mad and passions fire.
A tune of love and loss of things
Of pearls and diamonds and shiny things.
For the brace of a lovers touch a companions arm and the tender touch to ease the fire that burns this flesh from the inside out.
A simple kiss to seal the wish
That sleep…..will come to my side without the death bye her side.
Take these burdens, shakes and things.
And wrap them tight in angels wings gossamer and silver things
I give you all a soul to steal
keep it gentle for it reveals
all its hopes, thoughts and dreams
in paint and prose of complex things.
If you listen closely you can here the pipers sound coming near.
A life in progress
** it’s always harder at night**
Here I can come write,cry,scream or sit quietly. Here is home, house is where I keep my stuff.