My first journal entries on wordpress , everything in my life has changed since these early days… Everything except I still have PD and I still paint…
I sit here and think of how to start this page, words of wisdom, thoughts of deep intellect or emotional dribble… I think in sticking with the title I’ll talk about the journey, you may ask what journey? To the store… To the moon… Or maybe to the places inside our souls where we all must go eventually to decide on who or what we are going to be and or do as humans on this planet. Everyone should at least once I their life take this trip and find who they are and how they will choose to be. I openly embrace and fear change with all my being. It is the one thing besides death that scares the heck out of me. On the plus side when things are not
great, well it’s going to change but on the other when things are great unfortunately this will change as well. I have a very zen mentality on how I let things effect me, very simply they are what they are. I don’t get to excited nor to upset about much of anything, not to say I don’t feel very passionately about many things, but really….With so much going on in our world today how much stress does one really need from the white noise of the universe. Example: As my wife and I sit in OHSU waiting for my neurologist to come back in the room the mood is tense, like Georgia heat, thick and consuming, my wife is stressed. The doctor comes in and gives us the news, “Ben, you have Parkinson’s disease.” My wife begins to cry and the lead nurse and I comfort her. I think to myself hmm PD that’s strange oh well.. I wonder what we should have for dinner. I can’t change that my brain no longer creates enough dopamine to get my electrical signals from point a to b. So really, freaking out gets me nowhere but hot and sweaty upset and tired. So we head home and I make roasted garlic chicken with Alfredo sauce over angel hair pasta with a nice rubbed garlic crustini, (all hand made)have a beer and thank the world for giving me the strength to take my next breath, for the sound of the ocean and the gift of life. Anyhow enough for today….. The journey: to be
The stillness of the morning is almost oppressive, my body sits rigid and sore from the nights restlessness. I ponder how I’m going to be me today, finding the strength to not give up, to be strong in the face of tremors that make it hard to type or drink my coffee a shuffling old man at 42. Waiting for my muse to guide me from this dark place in my head I’m reminded that I still can walk, hug, spell my name and recognize the faces of my children. These are the things that give me strength as I stretch my ratcheting shoulder. This is one of those journeys that reminds me that things change. In an hour I’ll take my pills and my body will loosen up, my demons will fall at bay and I will take a deep breath and face the day with kindness and passion. For those of you who take the time to share this journey with me thank you, until next time Be brave, live, love and thrive…..,,, to be continued….
4:25 am pst
Someone once asked to describe what it’s like to have Parkinson’s disease and I wasn’t really sure what to say, I mean how do you describe the feeling of being told you have an incurable progressive neurological disorder,…? Well I’ve been thinking about it and it’s kind of like jumping into a really cold body of water (physically) the uncontrollable shakes, as the cold water takes control of your body and all your muscles tighten with an unforgiving, unyielding strength as the rigidity sets in and your muscles start to tighten and shake, struggling to move just to stay afloat or as you pull yourself from the waters icy grip the slowness you feel from the cold as it starts to release you from its clenches, that feeling of; if I cold just get my hands to unclench I could start to move again, well… In a highly dramatic way that’s pretty much it. Some mornings I wake around 3 am and wait for my body to decide its going to let me get out of bed, waiting and hoping that the cold water will warm just enough to get my feet to the ground because I’m sure that if my feet touch the ground that my heart will take me through the rest of the day. It’s my Friday in the working world which for me is a wonderful thing, not because of the day off thing but because tomorrow is my PT and occupational and speech therapies. For me it’s like a holiday every week 3 hrs of nothing but fighting off this demon. 3 hrs of nothing but some of the best, most kind and generous people I know. Well, enough for this morning. Time for pills, shower coffee, blah, blah…… For anyone reading this you may or not know me as a person but, I believe in you..!I hope you wake everyday with the strength and passion to do the right thing, be proud of who you are, be patient with the world it’s younger than you know. To all: Be brave, Be bold and love someone.Until next time……..
4:30 am pst
I’ve been up since about 2:30 am one of the fun and by fun I mean super crappy things of Parkinson’s disease. Today unlike the other six days of the week is a great day, I have PT-OT-Spch therapies today. So no matter how much pain I’m in which is tons today by the end of my three hour session I’ll feel like a normal person if only for an hour or two
It’s always a great thing. So the journey today begins for me in a great place a day off from work three hours focused on nothing but my well being and hopefully the rest of the day spent in my studio. Today I chase the demons away from my mind, my body and my soul. To all who read this I hope the world is kind and generous to you today. As always be brave,strong and have faith in your self. To be continued…….
2:53 am pst
It’s days like today I find it very hard to find my calm, sometimes it’s seems like the universe really wants to see how much I can handle. I mean really it’s 2:30 in the morning I should be a sleep. Days like today I have to dig deep to find my balance, accepting the day for what it is and greet it with open arms. The city is still a buzz with the revelers from last night, the restaurant workers and early morning delivery people.it’s funny how each city has a pulse and rhythm unique to its own. I had PT yesterday an for a few shining moments I could move my left arm well, I walked with a straight back. My feet didn’t shuffle and besides my cane I felt almost well. Sadly those effects slowly wear off and my body grinds back to a halt. Part of the reason I woke this morning is due to my muscle spasms, jerky limbs. Or as my muscles begin to tighten it becomes increasingly uncomfortable to be I one position so consequently I shift my self out of sleep. So my journey begins, I thank the world for the breath I have, the gift of life and love. I look forward to the day for what it brings and greet it with open arms. I go to that quiet place in my soul that says everything is ok, I take a deep breath and believe it, embrace it. Some days in my life and faith, I have to take minute by minute and hour by hour, but ya know I’ll take it. I’m heading down to my studio to begin today’s journey into my soul, for those of you who read this know I’m thankful for my life and all the things in it, it’s funny when you wake up one day and find a counter over your head how it changes your life and perspective on things.. So to all of you be thankful for what you have and I would challenge everyone who reads this do one nice thing for another human today be it open a door, give a honest smile to a stranger, or help a friend in need. I strongly believe that if every one did one nice thing everyday our world would slowly regain some of the compassion and patients it so desperately needs. To all… Be brave have hope and be kind…….
8:00 am PST
Within the existence of man how is it that we have become so lost from each other? How is it that we have become such an un-trusting unfriendly species. I look around the city’s streets of our world and wondered what is it that we can do as a people to change and embrace the humans that we are and change what has become of our race.
Today was a good day, and for those of you who don’t know what a good for me is I’ll make it brief: Pain level 5-6 moderate to severe dyskinesia and hand and foot tremor, followed by a couple of hours dystonia in my feet. Don’t get me wrong I’m not complaining at all that’s why this entry starts it was a good day. I spent almost all day in the studio. 2:30 am till about 2:00 pm I posted two new pieces on this page today and have a third almost done. When my soul is in harmony in the studio all my PD symptoms are less accept the pain. More to come a different day……. As always Be brave… Live and love…
4:30 am PST
Another day begins as I search the stars and my heart for the strength to take that first step, slowly my muscles relax the death grip they fought with as I sleep and give way to my waking soul. Today will be full of adventures some of the body and some of the mind, First day of four back at work I always dread day one it feels like walking into an alien landscape for the first time, that’s the funny thing about getting to take fourteen pills a day just so your body can move they tend to cloud the head even in place I know like the back of my hand. Slowly things will come into focus as my cognition regains control and I will far the day with an open heart, mind and the patients of an old cypress. Today is a funny day for me I feel small and very inside, what I would most enjoy is another day in the studio maybe tonight if I have the strength. Until then Be brave, never give up, live and love……
2:50 pm pst
It’s strange as I dive head and long into my craft as a stop to see the world as a “normal” person may. The world for me is a mass of texture and shapes of soft and hard lines. A mix of hard and light pallets. As I stare at my my back yard in heavy neglect, I no longer see the leaves that need to be raked as I see a mass of texture and form, folds of gentle hues perfectly balanced as only nature can produce, any how since I’m not a poetic genius I’ll leave the rest to the writers of the world. Art is grand!!!
Another morning of trying to convince my body to release itself from the grips of sleep. Sleep…. An old friend I don’t see very often, although last night I managed to get about 5 hrs. 2 more days of work then I’m off for 3 days. The morning is strange today the house is quiet just me and the cat wondering the halls as everyone sleeps, outside the chill of the morning keeps the summer heat at bay making it calm and soothing. All I really want to do is paint today my body is stiff feels like I ran a marathon last night. Some days it’s hard to find my calm in a sea of twisting muscles, I try to always keep a smile on my face and a welcoming heart, but today is hard. Today the emotions of walking the plank have my soul in turmoil, the fear and uncertainness of my diagnosis have me in their grips and I shy from them as a child does to it’s first fears. I wish the world love, today for my family and the people who believe in I will be Brave, live and love as I so often challenge the world to do, for today I am that small child full of apprehension of what the day will bring.
I am finding it so hard to find my inner peace today my everything hurts. Searching for that spot in my inner space that keeps the pain away. I don’t take pain pills for my condition so things get a little intense some times.
July 23, 2012 5 AM Pacific standard time.
Today’s adventures in my journey are going to be dictated over my phone as my hands are you working correctly today. For those of you who saw my most recent post anguish that piece is an interesting piece it started out as a very bright and sunshiny piece when it was originally created and through the process of my emotions and changing mood the piece ended up being a direct reflection of the pain and frustration as a human with Parkinson’s that I was feeling. Oddly enough after yesterdays adventures in never finding my Zen never finding my peace in my heart and creating “Anguish” I was able to chase that demon from my soul put him on canvas and lock him in key today I find strength within myself harmony within my soul the gift of life today is what will take me further into the journeys of my day. Sometimes I believe well excuse me I always believe that the hardest thing to do is find acceptance in the way that things are being able to toss away all of the white noise of the universe and take a small quiet step into one soul to reflect gently on the things that we are only as us in our quietest most silent moments within ourselves seeing deeply into our past and present. Until later today to all of you who may or may not read this be brave be patient live and love.
Everything has changed now, not for the better.