April 4th I check in at the imaging department at OHSU. On the 5th I rest and finish any and all last minute life stuff. The next day on the 6th of April I have my official surgery. I stay in the hospital overnight, then assuming all goes well a few days later they insert my power pack, then 2-3 weeks later I get plugged in and tuned up. They’ve provided 3 days worth of housing free of charged which is a blessing indeed . Unfortunately the who process is two surgeries and a recommended 30 day healing and stabilization period. These donations will go directly to the lodging and direct care that OHSU and insurance doesn’t cover. Any and all donations are impactful and I can’t express my gratitude and thanks for all of you. Please share the link even if you can’t help monitarily . All things done with love and light will be successful. Always and with some luck, science and faith I’ll see you all on the other side of this. If not please remember to always be brave be bold and thrive in the life you have.
After thoughts:How the weight of this world lingers on finger tips, pens and pencils. Caught resting in cracks and crevices. If everything you loved was taken from you what would you do?
Don’t answer. Think, feel with all your heart..look around find 10 things you can’t live without and give them away knowing the only thing you’ll ever have is the memories. It’s unfathomable yes? Welcome to my life. Now pretend with me. Take ten minutes, set a timer and do nothing but think about your breathing, then add another task like walking, but don’t stop thinking about breathing because if you do you can’t breath. Now add swinging your arms like normal people do, got it? Now walk, breath, swing your arms, now add anything but don’t stop thinking about the other things…..done…?
Good job you just got out of bed with Parkinson’s disease. Now doing all those things let’s get dressed, you ready. Oh but first you should go stand in a cold shower for maybe 15 min so your muscles have time to adequately stiffen up, then add all that other crap of simply opening your eyes and realizing you need to breath.Now on top of your tendons being so tight that when you flex your foot your neck cramps or add the complete lack of being able to feel the expression on your face or hear your tone of voice…. Yeah it’s pretty fucked up. People need to know this stuff.
I’m not complaining, well maybe I am but ya know I have the right. So the next time your out in the world and you think to judge another human by their behavior ask yourself why you feel the need to judge them? Ive been judged a shit ton by my own friends and family over the recent years and maybe truly maybe 5 of you actually have called me on the phone and asked are you okay, do you just need a friend to talk to, or ask really what’s going on, how do you feel and how can I help. So don’t judge my actions until you’ve cared enough to be a fucking decent human being and felt the depth of pain behind my eyes.
Fact: Parkinson’s disease will slowly and very painfully constrict my muscles to the point of causing my lungs and heart to stop. I will slowly and painstakingly realize that I’m losing my cognitive functions until it (PD) completely pulls a Benjamin Button on me and I die. So… That my dear friends is why I live in an up and down world. Because somedays I wake and inspite of all that shit I kick ass, make great art, love hard, write soft words and smile, other days I stay home, I hide I cry and write posts like this. Because THIS, THIS daily struggle just to move,cook,breath, walk to the store. Let alone find someone to actually put up with and love me unconditionally is a joke. It sucks horribly. Far beyond these petty words can do justice. Well I’ve said enough.
Until tomorrow know you have value, YOU, have value, you have worth. You are stronger than you’ve ever been whether you know it not. You’ll be okay. Why?you ask. Because I’ll make sure of it. My time has come and gone thousands of times. Yours is right now. Don’t waste it LIVE YOUR DREAMS, otherwise dreams is all they’ll be.
Expressions of my life - An evolution of art. 