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.
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 you are so far away now yet still my soul feels your heart beating. I feel the tears rolling down your cheeks. The silent sobs in the shower.
All so farway yet pounding in my heart, mind and soul. Why did leave so swiftly in the night? Such butterfly kisses wound deeply now. Each breath burns and chokes as your tears fall through time from your heart to mine. Forevermore to scar my heart.
I wobble when I walk and
Mumble when I talk.
I follow a path that’s been previously laid, by choices and voices the deaf ears of Parkinson’s made.
I’ve a voice that betrays the things that I say and ears that are silent to the tones that they say.
I freeze in my gait which is a step for those in the dark.
A trip and a slip is a walk in the park but don’t ever ask for me to not wiggle, its something I do for I’m stuck in the middle,
of being forced to move by mans little pills and ordered to freeze by gods very will.
So will happen to this corpse slowly made, I’ve fended off cancer and live with the shakes my friendships have left me for they’ve had all they could take.
Can’t t blame them I guess for its had to take
a voice that varies with sounds that it makes for they come from a face that tragically says something that’s different than what the voice has said.
Confusing it must be to live life by choice, to believe me is hard
when you only listen to my voice.
You’ve forgotten to know me and listen to the motions
this body makes with grand little notions.
Here let me take care of the little things in life,
so you can focus on keeping yours nice.
I’ve given up on dreams for mine get lost or frozen or are simply just dust. My actions will prove.
I’m a quality man,
if you learn to listen from
your heart not your head
then you’ll hear me quite simply
if you just listen instead.
Of looking for meanings that are lost in the dark for my friends I rather simply
I speak from my heart.