in the end when the deathlights come can you say you did everything you could to save love…..
“a life in progress.”
in the end when the deathlights come can you say you did everything you could to save love…..
“a life in progress.”
There comes a time in every life where one faces the thought of mortality. It may be of their own, your parents or child. But that time will come and when it does it will be as heavy as it is. Each person has a personal perception of what they can carry, which of lifes burdens can be carried and which can not. Some things that have been on my mind as of late. The weight of being or not being. The weight of choice or not choosing. The realities that these choices or lack there of do effect,some that are personal and go unnoticed by everyone and some that are drastic and get judged by the world.
Lifting the veil:
There was a time when I stood behind you
blindly and watched the world from the safety
of your comfort.
then life came and took you away
showed me the truth in my life
and the lies of my past.
forced me to be a man amongst men
yet as but a boy i failed to see
what the world would be.
if i was you and you were me.
what choices would you make
just where would your heart be?
As a child the fever came for me.
it took my breath away gave me the madness
that dwells deep in my soul.
no child see deaths face so soon and closely after
just being kissed by angels without getting a little burned
it feels as though god has been trying
to take me back home for years.
*what kills you makes you dead
and the rest just makes you tired.
sorry to let the truth show.*
I write from a very unforgiving place a place of no color ,just baited breath. who will go next, who will, what will, why did and how come. these are words ive learned to master yet never understood the reasons why.
why do we self make such heartache of this life
these mortal choices meant to enrich this paradise planet of
human experience. Of love,laughter and everythinig inbetween.?
We become trapped behind this veil that steals time and changes
perspectives as the wolrd spins.
once i woke up from a dream i had.
i was healthy, i had a family that loved me, two cars and cats.
there was a job and friends, bbqs and swim lessons, first overnight gitters
and sleep-overs filled with fun.
there was gradutations and salutations
then the veil was lifted on us all.
the world was still spinniing so much time had gone by
where oh where did all of those years go dear god where AM I NOW…….
THEN I WAKE…. its cold in this house, ghosts live here with me .
ghost from my past, present and future meet here each day to cast
sufferage upon this mind….
ive only tasted bliss once…
it tasted sweet like the sunshine should just as loves embrace kisses the morning dew.
then all was gone….. the spell broken. time lost.
the veil had been pulled and eachday counted more than the next.
Eachday a gift of sorrow filled joy. Each Day a moment in time never to come back
oh if for once i could just rest my head and heart at the same time. then maybe all of this
nightmare of lifes trials will make sense in some strange and twisted way.
Perhaps some penence for
misdeeds in a life forgotten but debts unpaid?
so many question.So little time.
Eachday we are given the gift of choice. We are given the opportunity to wake and say “I will!“ and “I won’t.” to create our lives as we see fit. Yet as we travel through this life we pick up from our experience things such as fear or love, hope and dreams. We are taught and told as children to laugh and feel, to love, talk, dream and explore…….
Then life happens, disconnect, the abuse, bullies, body shaming and conflict that exist in every culture and the everyday human experience. Most of us grow up and lose site of our dreams and goals of true happiness. The pure ones we had as children, the dreams unbridled by the weight of doubt or fear of failure. I wish to God that I could get back to that place of freedom. Freedom from judgment, freedom of the feeling of failure and disappointment.
In some small way I have to admit that I have found that place though. I found it and lost it a few times in this life. So I guess the point is to never lose hope and love in your hearts. Life ebbs and flows in ways and reasons that people far more wise than I can’t figure out so I dare not interject supposition. But I will say this Parkinson’s has shown me that if YOU, I, do not live this life each day to the fullest of your hearts desires that it simply won’t happen. One must not live in fear of self or fear of others. If we do then one has instantly and willfully give power of self over and stopped living or being the best “me” you as possible.
Sorry to ramble off track. I’m supposed to be in Portland today doing neuropsychologist stuff but she’s sick. So guess who gets to be Benjamins shrink today……? You guys lol. No… Actually not. I’ve since decided to not share #realtalk life shit (relationships stuff) anywhere anymore. Sadly here on this topic I have to be hypocritical as I normally encourage free speech of all kinds. But to much damage has been done to me and through me by social media on this subject. So I’ll chat and write about everything except. My deep personal relationships. It’s sad but ultimately a necessity. I’d hope to have this place be safe so the world could see what PD can do to a real human life. Not Michael J. Ali or Brian Grant. All cool dudes I’ve met with and (not Ali) spoke to about PD but not true examples of life with PD sick or not these folks live “padded” lives. Again oops I’m off the rails today with a sick shrink today. Okay alright some Waxing poetic…
Words :The light in your smile and tears in your heart always drew me in. The fixer, mentor, empathic friend and lover I’ve been in this life. Yet today I feel bare to the world, racing hearts beating beats faster each moment thinking about the future of the future of me. I love to love and I fear the shadows in the darkness as much as any other. But each day I raise my sword and shield. I reach for your burdens both of youth and cancerous disconnect. I’ve tried with all my wisdom and fortitude to the right thing time and again yet this atlas of human guise grows so weak and tired of the fight. I have not the heart to fight for words not my own. I give what and I have yet I fear this tree of life he been picked bare. Do you want this husk of a man you once new but saw a defect free. Now you’ve seen me, tasted my heart and soul looked into fears lining the lonely eyes of madness and seen my true fearful childish self. Do not hasten with judgment nor disconnected heart. But reach deep, more deeply than ever and choose to live by the heart or love by the mind either way I choose to live time and time again. For know these are the lost and rambling thoughts of a man driven mad by love, a broken heart and dreams sacrificed for a life never seen to its fruition. Now I write soon I will paint and sleep. Then it will all happen again. Each and Every day. So if you,, I, he, she, me, we, them are not living the life you need, change it. I’ve wasted so much of my life living in worries and regret,fear of living in the moment because I was afraid of the future. Paradoxical isn’t it. Any how. The End.
B. 2016 “a life in progress.”
(the moon, a tree and the fire in me.) Autumn Song. 8×10 inks and acrylic on canvas. Nfs. *PS that k you Mari for finding the light and hope in this piece, you saw its hope and I saw its hurt. Thank you for giving me an optional perspective.
Good morning,afternoon and evening which ever it may be for you. I’d like to report in that all is well and feel like a million dollars. But in truth I’m tired, very tired and my body is very sore and has been for a week. Sore to the point where my tendons feel stiff like bone and the tension pulling them feels as though it will rip them from the very bone they are attached to. Yes, that kind of pain. Lol. But it’s okay right ? Everyday has its own set of challenges and obstacles to observe and concore. To I sit in the cold and rain, dark and wind of the morning thinking of my life. This time of year has a way of making one reflect on lives lived and things gone by. This year I must say a feel pensive detachment from the season. I’m still waiting to confirm that cancer isn’t a factor in my life and as I wait , I feel my body aching and my throat tighten with each passing day. The weight still dropping, mean while I prance around pretending that everything is okay.
It’s been hard this year to handle the changes as they come. I’ve failed once already this year at life as change took me by surprise not once but twice. But I digress the point is never to live in the PST but to learn from and move forward. Now does that mean we move forward alone or with others ? Who’s to say really, I’ve found that life, for me, is far to complicated to decern and as Parkinson’s destroys my ability to separate perceived fact from fiction I find these days I’m doubtful of every choice I make for the fear that I’ve make the wrong choice lingers. Blue or green, fish or chicken. Cable or electricity. All of which I’m finding I see only in shades of muddy grey. You see it shakes the very foundation of a persons soul when they are tossed aside like last weeks newspaper, old news, used, read, learned and unwanted. Be it from friends,lovers,family or stranges alike. We all need to feel validated and trusted.
Well…… Apparently I’m going to talk briefly about many things bouncing around in my head today. I feel like crap, I wish I had a more poetic way to say it. I’m sure I could one but the point would be lost in flowery words. Simply, I’m in pain.7-8 my shoulders have little range of motion, my hips cam barely sustain the pain to keep me upright and my balance sucks. Please understand there is NOTHING anyone can do. This IS PARKINSONS DISEASE. See Dr’s don’t really tell you what it’s going to be like because PD is different for everyone. Words like, stiffness,rigidity,cognitive loss, positional instablity,dementia,distonic cramps, dyskinesia. Normal people don’t know what to associate these words to, nor did I at first…. Honestly they don’t mean shit until you experience them with a neurological disorder. Imagine two cars, these are the messages your brain want to send to your face , one says smile,the others says,laugh. Well Parkinson’s disease derails those cars on their way. The car saying laugh made it just fine, but the car saying smile ended up backing into the pain center and sent stage 9 waves of pain down your foot making your to s feel like they are on fire from electricity. So you need up with a face that isn’t smiling and ends up looking a bit pained as a it laughs,but no smile, because remember one of those cars made it to its destination. So you get it, messed up brain signals.oh the joy lol.
Right then today. Ot and PT here in Portland Oregon then back home, clean, paint and sleep. I’m starting off this week not feeling well as this last Saturday and Sunday were very bad pain days, stiffness,rigidity,slow. So starting the week not feeling 100% can be tricky. Either I’ll gain strength from the activities of the day and week or it will kick my ass and make my symptoms worse. Sadly there is no real way of knowing what my bodies reaction will be. On to happier news I finished a small piece ..
Well sadly the last two hrs of this F’ing post was deleted somehow.probably me being a dork. But I’m tired. I’m home back from OHSU, goodday and goodnight. I’ve new paintings to show, so I’ll be back.
As I start my day of doctors, pokes and prodes I'm reminded of the constant of change. Simple and basic by design, complex by nature yet feared by most. #thankful for all I've known and all I've done. Today #bekind for if not you the who? Always B. 2016 #autumn #mylifewithparkinson's #myhouse #grapeleaves #artistoninstagram #parkison's #findacure #dominatethearts #PositiveVibes #bethechange #selfcare #hopelessromantic #awareness #staypositive #cancersucks #nevergiveup #neurological #awareness #writer #poet #onelifetolive #OHSU #onepersoncanchangetheworld #neuroscience #transitions
On a completely different subject. My initial bloodwork labs came back clear and clean of infection or virus. White blood cells a tad high but well within normal range. Now I wait for MRI….. Happy Wednesday much love and light to all.
B. 2016 “a life in progress.” ©
“Vessel” work in progress coming along nicely.