It’s been years and I don’t know why. A long time ago a change came. It tore everything we knew apart from the seams. So many things I wish would have could have been said before the fog came and took me away. It’s wasn’t by my hand that these things came to be. I know nobody understands what it’s like to not feel anymore. The chemicals in your head that everyone uses to decern right from wrong , clear and not clear. The spaces in-between the choices made no longer exists for me. I don’t see the splash from the water before it comes. I do see the sun before I feel it’s heat. One plus one doesn’t equal two anymore. I forget what it’s like to be me anymore. What can say. I miss you, your laugh, your eyes and your smiles. I miss our lives together and don’t understand why we couldn’t still be a family separated but still be a version of what we were. People do all the time, divorce is sadly become a normal excuse for failing to communicate. To my dear son and daughter Andersen and Isabella. Please know how much you are loved , cherished and missed . Every second of every day since I was asked to leave our family I’ve missed you. In the darkness of cancers grip I kept your faces close. There were days that the dream that we could be in each other’s lives again kept me alive. In the dark of desert when Paula took everything from me it was your faces that kept me from letting the evil of this world take my life from me. I spent the entire time I was supposed to be healing from cancer defending myself from people who should have been helpers instead of hindering. I made choices in those years because I had to, none of th choices were good. But what was I to do??? Nobody was there , everyone figured I’d be dead by know. 25% chance to life isn’t a very good diagnosis especially when I already have Parkinson’s. If I could change the way things happened I would, but I can’t the only thing I can hope is that you remember the man who raised you would have and still would give his life to save you from danger. Please remember I have always loved you and never wanted to be away from my children. I love you, be safe and make good choices. I’m easy to find when you’re ready. I love you, I miss you. Be safe
Love, Dad. Benjamin
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.
There was a time when life was clear. Each day I’d wake, go to work come home hopefully making dinner with the family, movie-tv time evening chill then sleeps, rinse and repeat for years. Now I feel challenged at every turn, pulled and pushed in every way possible that a man and human could be taxed of heart,body and soul. This candle grows dim with each deception and sin I swallow so the world can rest in peace as I bury their secret whispers to God along with daises in my graveyard. You’ve broken me and my robot heart with your robot heart breaking machine that you’ve crafted over a lifetime of abuse at the hands of others lies. Greed makes people crazy, I know as I’ve nothing but the clothes on my back. Nothing to hold onto but the sound of my own voice and pounding heart. Nothing else to lose except myself.
Why??? I scream at the heavens as I beg for forgiveness why must I be so cursed with this body and mind. This soul on fire. A walking zombie just waiting to to hear that golden horn to take me home. Faith has a way of making us feel super human, like we are closer to God than anyone else. Are we though can you not decern the voice of God from your own nor the whispers of demons in your ears and flutters in your broken robot heart.
Now life is not clear or good it is not the life I want to have anymore. There is to much pain, fear, anxiety and confusion here in this new place of life. All my safety nets gone, just me and my bad choices. At least I can be accountable for my actions, reasons don’t have to be excuses sometimes it is just a reason but I’ve have learned that when think you’ve got life you’ll find life has got you. . I’m tired of this knowing, seeing, feeling of peoples hidden truths. It is a burden a can no longer bare. Sleep will come soon and I will find her again in heaven as I rest my tired soul.
**Just working through some stuff, as a writer and artist here is my canvas. Do not judge what you can’t even imagine.