Once upon a time I was happy. I was in control of my body and my mind. Once upon a time I was whole. I had a family a job and a reason to live. Those times are long gone. It’s been for over a year now. I some how by the grace of God survived cancer only to come out on the other side without my son’s love and affection. It’s been over a year since I’ve spoken to my boy. My son, the one thing I believed I’d done correctly until Parkisons disease took my family from me then cancer came And took the last strength and hope from this life. Now I am a broken man. Misunderstood and judged by other from a place in their past that they cast me into because they can’t phathom the innocence or won’t let themselves because they too are so damaged from their past that the only place for them to put me is in a box of uncertainty and mistrust.
As this disease ravages my body it also ravages my mind. Changing my thought patterns and literally erasing modes of thinking.. As I learn more about this disease and it’s progression I’ve become even more fearful and desperate to put myself in a safe situation.
My ears can’t hear the tone my voice makes and I can’t decern the look on my face from the sound of my voice so 99% of the time I’m in limbo hoping to God I’ve communicated myself correctly. Sadly and far to often I find out later that I’ve not done so well as people so often ask me to clarify or so often I have to ask people to clarify because I can’t even understand their train of thought because I can’t fathom that ppl think a certain way.
Anyhow I find myself at a crossroads of what could be the end of my time on this rock. I’m far from home and without a solid foundation, a place my broken mind has taken me too. A place I was told was safe, a place in actually felt better at first, now I’m unsure as the tears and the fears of my daily life come crashing down around me. I’m lost in a sea of what is happening. Chaos erupting without provication or forewarning of decernable behavior.
Back to the afore mentioned disconnections in my brain. Not only can I not hear my voice, facial expressions or body position but I often can’t decern the same features from those whom I’m speaking with. For instance once I was having what I thought was a conversation though of serious matters I thought all was well when the person whom I was speaking stood up and with great emotion to my shock and awe was horribly upset. This is my curse, a mind trapped and fading in a body dying of misunderstanding and loneliness for the simple basics of life, love, compassion and understanding. These things are lost to me. And it is for these reasons I run and now I’m lost and affraid. Lost in a mind that can’t tell which direction is up or down I can’t tell what is the correct choice because I can’t see or better put. I have NO concious capability to see the outcome of my choices especially and sadly if emotionally pushed or spontaneously put into questioning or planning. This has been going on since my diagnosis and sadly is something that I did even learn about until 2017. THAT’S 8 years after diagnosis 8 years of making the wrong fucking choices. Meanwhile people all around me have no idea that I have no fucking idea that I have no fucking idea what I’m doing.
With the VERY BEST OF INTENTION I’ve been making life altering choices and since I lost my children and wife in the process of illness I have nobody who knows me in my heart I am, family first, loyal, hardworking,honest and driven man. I am an natural born artist and passionate person. All people know is this shell, this barely surviving husk of a human. A broken man who fears what the day brings while at the same moment understand that I need to appreciate these moments because they are fading fast. With each eruption of anger, fear and emotional instability around me increases so does the lingering feeling that I am done.. with this life. That my voice and heart have list their ability to convey my regards appropriately. Should that be the case then my time on this planet is done, no family,and no future with a progressive Incurable neurological disorder. If I can’t spread love and Joy. If I can’t tell when I’m upsetting ppl and I can’t tell what choices are bad for me or good for me then I’ve become a danger to myself. Please do not fear my silence.
But please know that I am broken, you’ve broken me, this world jas broken me. So now maybe I’ll write,maybe I’ll paint but for know I’m going to simply fade away. I am defeated I am a broken man.
Benjamin M Prewitt 2018