609pm pst and I’m lost in thoughts. I have been all day. With the tragic and sudden end to my attempt at a better life just recently. Then coming home to a house being sold. A 60 notice to move, a law battle to regain my rightfully paid for and earned Cigna disability income. A battle to retrieve my personal,medical and legal items from Arizona plus move hereove to a new house in Salem is rediculous and I’ve almost had enough. It’s much for one person to bare. My son and daughter have forgotten about me and really I’m over it. Everytime I try and fix this broken thing that is me I end up making things worse. Seriously right now is beyond me, beyond anything I know how to cope with.
I’m grateful for my beating heart I have but right now on this day at this time I am miserable. Why can’t I simply put myself in an environment where I can paint and write in peace?!
Either I become involved with my caregivers or I’ve a family member and that’s not a fair burden to put on A person who isn’t a true employee. There is to much family and not enough business of health care. Often in those cases or to easily one party can feel used or unappreciated over time.
At this point I’ve given up on love. This last experience was exactly, literally my largest fear as a disabled Adult realized. Even as a grown man I can not tell you how terrifying it was to find myself away from everything I know in the hands a person I thought knew but entrusted my life and well-being to have that person turn against me and force me into a homeless shelter with no notice or justified provication.
I don’t know, wtf I’m doing. I’m fucking still having flashbacks backs of that day and night in the shelter, then the 4 days of travel. Me, my leg brace,knee brace, cane 2,boxes and 2 bags and no help. No caregiver no friends or friendly faces. Pill schedule, diet and life thrown to the wolves like some disposable cup or common piece of litter.
Now just for my sanities sake I sit here and write it out, try and replay the day , weeks, years of the last few and find where Ive gone wrong. I’m I forever lost with disease of Parkisons, never again to be able to decern the right choice from the wrong choice. I’m simply to tired and work to go on losing. I can’t, don’t have the strength of soul anymore. I don’t have the physical strength or endurance of a young man anymore. I have the body and mind of a man who barely escaped cancer, isn’t nearly done with recovery from that and has been actively taking medication for Parkisons disease for 8 years.!!
All of this shit hitting me at once has me freaking done. I’m numb, I don’t know what door to choose and I’m not sure anyone can make that choice for me, but I’ve obviously proven time and time again over the last 5 years I can’t fucking make a sound choice to Save my life. Half my family and most of my friends have left my side specifically b cause of what Parkisons disease has done to my brains and emotional functions. Chemotherapy and radiation treatment didn’t help any especially straight to my head.
Honestly I’m not sure what to do with myself anymore. Sad to watch what I thought was a fairly successful life go so far wrong so far from what the center was. I try daily to just look at the bright side of life, I try every day to stay calm and loving. The kind of person who is compassionate and understanding, but I don’t know what goes wrong. It’s to hard on people when they can’t understand that a PWP often can’t hear their tone, nor came we normal autonomic controls over our diaphragm or esophagus muscles, mine even worse because of throat cancer treatment. Sorry I lost track, another thing that drives me nuts about Parkisons disease, focus… I have none, zip, zero, nada. I can’t even tell you how long it’s taken me just to write a few scattered paragraphs on a subject that it so near and dear to me.
Anyhow, I’m tired, I’m sick, I’m fearful of the future and honestly I’m tired of being used by other people. Always for their gain. People who force me into “Normal” situations knowing full well that I’m incapable of making clear and present good healthy choices and then get upset when I don’t react as expected… No shit people I have fucking advanced Parkinson’s Disease.. Sorry last minute vent.
I hope your life has been kinder than mine and if it’s not I pray that your will be.
Art does not come from a shallow soul nor does it come from the weak of heart or thin of faith. Art comes from the struggle of life. The struggle I think every Artist feels. The balance between the light and dark of the human condition. Perhaps the creation of the things we need to see and say vs the things people want to hear. Often I find myself lost in deep thoughts for hours at a time. Sculpting each pallet stroke, blending each colour, checking transparency and viscosity. Peering into it’s pigment density and touching the silkiness of its touch between my fingers. This is me at my best unless actually painting or sitting with friends enjoying the bounty of life and this Earth. Good food, good wine, good medicine and friends. But art does not come from these long periods of content. I feel since my departure from societies “normal” that I’ve been forbidden to find peace of mind and stable heart. Yet all I I’ve ever craved to rest this weary weathered soul. Ever since I was a child Ive carried this burden at the age of 2-3 I remember this weight of conciousness. Art, cleans my soul and gives the four million thoughts going through my head every second a place to land and settle with ease. Trying to find the motivation to keep going today… Afraid of making the wrong choice. They say, be free! Live, laugh, love but all those actions have consequences and I no longer possess the ability to decern those outcomes. I tried just recently and I cost the last bit of things I had on this Earth. This is why I’m paralyzed with fear and regret, if I could hid forevermore I would but I’m compelled to share this life with someone and if it can’t be one hand to hold. Then let it be a million souls reaching out to the night sky as I try and bask in the glow of friends and the compassion of those know me best.
Oddly I find the harder I try to live a better life, to give more and need less. That there are days when all I can see is darkness of this disorder. All I feel is the lose of the things,people, and memories, some people and Parkisons disease has stolen from me. There have been times in my life when the universe has shown me its true gifts in life and others when it’s stripped me to bone and laughed as I failed. My brain incapable of creating the chemical that comes with making a stable, strong choice in life… Gone, unable to see through the Agnosia and lingering damage done from chemotherapy and radiation treatments directly to my head and neck. Today I haven’t seen a flower worth remembering. Today is just one of those days.
One of those days where you just have to shed tears of sorrow, to allow one’s self to truly grieve for our perspective loses and emotional suffering. Today the world seems cold and brutal.
Such a struggle over the years to her. Keep her safe, dry and warm. Keep her watered and groomed in every fashion. Over the years I’ve found since you’ve been gone I can’t do it all I can’t make things right and I can’t continue down this path of destruction any longer. I’m setting my soul free as youve set me.
No longer will this burden be mine. This tree has grown old and cold. Brittle to the touch and tired. A constant drift wishing only if peace and security. For the love and kindness of days gone by. As we’ve grown older and more cynical we cling to the beliefs that make us comfortable in our life choices. Well what if ones wrong? I’ve learned and am learning to be open again, admit my faults when confronted with them. I am human I am guilty of human faults.
They drip like old paint from rusted can, thin and translucent. I am tired of always feeling like it’s a set back instead of a foot forward. Now this house those memories and times will fade away like all the bitter Sweet tears of the last five years….. Kismit the say and much to my dismay tis true, everything you do will come back at you.
*****Just writing, not thinking or drinking. Just writing to work out th demons. Yes the house is being sold and everyone will be done and gone. Fairyland is just a memory. I’m not what the future holds for me in this life. I keep on being stripped of all my worldly possessions, now including most of my clothes, furniture and a lifetime of memories. I’m fearful of what the universe has in store for a man with nothing but good intentions and a broken soul. I guess we shall see. 12-13-2018 is end date, I shall be gone far prior. Much love and light.