Journal entry 23-February 2019
Everything in my has changed since I last wrote here. Everything is gone, from my childhood on until now. I hold a few small treasures, a torn photo, or two but nothing more. far less than Steve martin in “the Jerk”
Since 2012 when I was forced to stop working because of my Parkinson’s Disease everything has gone down hill, some my fault some not, regardless it’s a soul breaking kind of pain that only those who have experienced the death of someone one you loved with all your everything can even begin to grasp . yet I sit here and write in my journals in hopes someday someone will understand the other side of Parkinson’s disease. We always hear about the survivors stories from the caregiver perspective about how hard it is to watch your loved one wither and fail, literally fall apart PIECE BY PIECE IN FRONT OF YOU. it takes a special person share that journey with, someone I’ve yet to meet. Someone whom may not even be. Since last I wrote here I’ve had cancer its treatments and am currently two years cancer free and battling a huge host of health setbacks because of the treatments and how they relate and have effected my Parkinson’s .
The new wave of anxiety and depression has risen far beyond what I expected. It’s always such a trip to experience a panic attack full bore that has your heart racing and mind spinning all while standing there trying to hold your shit together ordering coffee. Or my favorite is when I’ve been in stage 7-8 pain for weeks straight and someone asks how I’m doing, and all I can do is say oh ya know a little stiff, sore lol ya know PD ha ha. when in the real world I want to scream at the top of my lungs and say please stop the pain, stop the mental torment and emotional rollercoaster hell of Parkinson’s disease. bring back my kids and wife, the life…. But then I also think. I’m the one alone, not them…. They have money, luxury, freedom and are free of me, their biggest burden and if I was meant to be then so be it. Anyhow I’ve lost my point and focus. I’m not going to write this anymore today. I think the hardest thing about watching this happen to my life. I feel helpless to stop or change how the world perceive me or how I perceive it. Again I find my mind wandering. summation of ten years of Parkinson’s , it sucks, I live in pain and a constant state of numb to on fire both physically and emotionally. I made the personal choice to not use anymore pharma narcotics for pain about two years ago I’m glad I did but man has it kept my pain level high 6-7 always I wake stiff as a board and stretch for 3 hrs. before I get out of bed. almost everyday. up at 3-4AM out of bed making coffee 6-7am back to sleep at 10am lol. really though, truth. because thinking and processing emotions has become more and more directly attached to my physical body, AKA advancing PD simple tasks that one normally does cause me fatigue. like real just ran a flight of stairs tired to put the dishes in a cupboard above my should height or folding laundry lol the worst arm strain ever and muscle failure. like right now my right shoulder is cramping to the point where I need to be done. writing.
please know I love you all dearly. I am lonely and I am in great pain but I think that this is just my life, it has never been easy for me, I worked hard for everything I’ve ever lost or had taken from me. thanks for listening over and out journal entry completed.
I wish I could find the words to express how it feels to feel everything. To sense a person’s mood and sometimes hear the very thoughts they make loud as day. Simply by looking them amd sometimes when I’m not even close . It a burden I’m not sure I want to carry any more. Not only now does my mind vibrate but my body does as well. It kind feels like I’m God’s tuning fork. Though I admit I’m tired . I’m tired of trying and failing I’m tried of the loss and betrayals. I want simple chaos , mindful madness. I need to fill each day with as much beauty, love and kindness as can.
When I look at the world today all I see I people taring each other apart for one scrap of meat or one step up the Corp ladder. I have recently seen corporate greed at it’s finest. I had to hire good guys that were worse bad guys than the corporate bad guys to win. Now I’m paying the new good-bad guys to keep the other bad- bad guys away. So dumb and so hypocritical.
No,… I’ll be good and not name names because I now a life long relationship with my new found good-bad guys. If that makes any sense. Yes I used fire to fight fire and got burned. But not toasted like I would have been….. Still vague in know sorry.
Anyhow part of the reason I don’t feel happy anymore, I have to assume has a bit to do with Parkisons disease. Since dopamine is the bodies main source of “happy- juice”, autonomic functions,fluid movement, processing of the executive function ect,ect, yes Dopamine the thing that makes ALL OF US “Happy” my brain doesn’t make anymore…. So yeah go figure that one out.
How in the Ff I’m I supposed to cope with this. I feel these waves now. Waves of emotional chaos that come deep and hard it’s like the only thing left is tthr core of hope and love. The most gutteral and pure of emotions . Those I love, I love and crave I want all of the attention and those I dislike…. Very very few maybe one or two people alive that I truly despise and have not forgiven the depths to which I dislike them is visceral .
I wish-feel to much and to little at the same time 😔😞 I love to deeply, miss to deeply and hurt to deeply to continue with this path. Soon, as I’ve whispered I’m going to go away. Maybe I will write and Paint more maybe I won’t. I will however not continue to be taken advantage of by others . There has been to much pain and grief surrounding this Parkisons disease and cancer. Nobody has stayed to see it through which is fine, it is what it is. I love each of you for who you are. I see far more clearly now than I did before. Before I believed that everyone was good, that everyone had honest intentions as I do. Now at only 48 years young I’ve seen the worst of us humans women and men alike . Pure evil ,broken damaged, vile and bitter creatures . Users,takers and fakers. Is what I like to call them and yep they really are real.
There are people out there that are shit. Sadly for as many beautiful souls that I’ve met here and on Instagram or Twitter, Facebook and real life. For every nice person that I’ve met ,.I’ve met and had to literally evicted from my life 3-4 severely toxic people that really didn’t care what happened to me or not. My well being wasn’t, isn’t nor will be a true concern to that person. Idk what the point of all that was or is but it needs to come out of me and into somewhere else.
I’m tired of carrying these words and feeling around. At my age my friends are either, Dead, married and set in their ways or simply busy being productive humans. So I spend a lot of time alone in my heart and head, this stiff, shaking painful body. Soon I’ll be with the trees and the birds and the bees. Soon a camp fire nightly as it should be, star lit above bright nights and coyotes howling at the night. I have no more time to waste. No more life to give to those who would waste the precious little time I have left.
I’ve run out of things to say. I’m numb, Inside and out these days. For what it’s worth . I think those of you who made it all the way through that rant are pretty cool. I’m sorry that my mind isn’t calm and clear anymore.
**I’m just tired of being always sick, always in pain always kinda confused always wondering what fucking day it is or why the next day is important. For instance… Scenario
Me: I have a very important appointment in Saturday 4th.
Me: it’s Saturday the 4th it feels like I’m supposed to do something…. This after counting the days down but giving them ZERO weight of importance. So, I’m aware of the the two separate pieces in: 4th and Saturday.. you following so far???
K well Parkisons disease makes it Impossible for me to put the two things together anymore. Hence making planning, execution and task management something I don’t do well. Anyhow ✌️🙏✨📿☕I need coffee. Mhlyh
Slowly but surely I promise myself and my family. I will succeed in life even if it is only to leave this planet a better place than I found it. To my son and daughter I miss you more than human words could ever express. My life is better having known you. Happy Friday to everyone and remember to spread the love not the hate. 🙏📿🕯️
B. aka: Hey dad Mr. B and benjamin.
There are few times in which I feel most whole and normal. It’s probably when I’m in the most pain but my head is the most clear. It’s when I wake up first thing. My head hasn’t been filled with words and other people’s emotions and thoughts. The city is quiet everyone is asleep and world is peacefully sleeping. This is when I am most a one this myself . I can feel the tension in my tendons ready to snap over the slightest movement. Slowly I wake stretching each tiny bit and piece . Eventually making so my feet touch the floor, I’m sitting with my back straight ,knees bent and ready to stand up….15-20 mins later IM UP!!!
Yeah getting in a standing position from sitting has become more and more difficult. I’ve developed sciatica on my right side now which is making sitting or standing for longer than 10-15 min at a time excruciatingly painful but hey what’s a fella gonna do? I have to be sitting or standing?? Right, I’m not sure what the other natural human position would be?
Okay sooooo my mornings ,today for instance. I woke up at 230am after sleeping form 3-10p 12-230a 🤔🤔🤔 sounds bout right. Lately my body has been going through it’s biannual sleep switch where my days and nights switch. It’s a PD thing, I used to think it was me just being weirdo but thankfully no, every six months or so I swing to nights then back again. Hey built in reality/perspective changer right lol . I just roll with it 😂😂.
So pain in the AM. Yep by the truck load . Over the course of the night my body tightens up as I sleep the meds slowly leaving my system. So I wake kinda like it feels after you’ve been really really cold or sitting for a seriously unusually long amount of time in a very very confined space. It’s pretty wild tbh. I promised myself today that I would be kind to myself in the way I self talk.
Since Arizona and the things that happened just shortly after coming home those events killed whatever self-esteem I had left. I’ve been recovering from the trauma of those events and now six months later I’m at a place where I can think about what direction I’d like to go. I’m finding since these events my self-esteem is crap. My self talk is negative and I’m spending to much time looking outside myself for happiness. Valentine’s day really showed me that. So today Monday the whatever of February? I’m not going to let negative self talk enter my head and heart. I wanted to not complai about stuff on this post. Kept it real and not to heavy , at least I don’t think to heavy. Remember the weight of your burdens is dependent upon your perception of their weight. Think about that for while. Trying to keep it real and feel but still have the power to heal.
Much love and light.