This life, this love, that flows freely between you and me. Of nature or natural, of nurture or need, of sanctuary or seduction. These veins fill with life, with love that flows freely as this grows into the tree it will be, this life, this love…… between you and me.
A morning freewrite. Trying hard to re-become the person I aspire to be. So often I speak of free will and choices. So often in life we find ourselves in situations where someone or something is or has taken our freewill or choices away. Well I’ve learned good or bad, it is the perception and the choice that is always our own. Choose wisely.
Since I was born I’ve been a sensitive human, a kind hearted, giving to a fault human. Circumstances in this life have made me hard and deeply bitter I have-had realized. Over the last year I’ve shed that skin, I’ve been through the hells of This life one last time and have purged, rather forcefully the last evils from my life.
People,places things, behaviors that have gone unchecked or unrealized for to long. It’s I’mpossible for me to accurately describe to you what it’s like in my head now after 9 years with Parkisons disease, 7 hard f’ing years of balancing medications with life altering personal events. A whole new level of clarity and yes at times a whole new level of lows. Let’s just say read the book. It’ll make more sense than me explaining it all.
The one thing I want you to take a way from reading this today. Is even in the face of certain death, a slow miserable death, (Google late stage Parkinson’s disease) I CHOOSE everyday to try to be a better person today than I was yesterday…. The worst thing I figure can happen is at least I tried when millions didn’t.
One person can make a difference. Sincerely, Benjamin M Prewitt.
I’ve found myself here again.. This place of transition and question. I see my peers making “good” choices for their future. I see them properly planning and executing their lives perfectly. Then I look at myself and I’m reminded of the burden of Parkisons Disease.
To be specific this post is going to cover the matter of cognition and planning execution. Two things that have drastically changed since my journey with PD began and even more since the cancer treatments of last year. As most of you know my experience with this disorder has been pretty miserable. It’s been a constant ebb and flow of medication and personal challenges.
Most recently I learned a lesson in life and in Parkinson’s disease. I will probably never trust a lover to be my professional and legal caregiver. As a person with cognitive issues I’ve reached a point where I can no longer trust my judgement. Even this last time. We did months on the phone, a month in transit, vacation style some get to know you time and still I failed at picking the correct human to do the job. This time I’m at risk of losing the most precious things I own. My son, dead grandmother and father’s things. My medical and fincial records too are being held against my will and I ended up homeless. So as a measure of protection I’m no longer dating anyone and I’m no longer going to be using friends or family member as a carer. It creates to much tension and when things go South everyone loses. The carer loses the job and the client (me) loses a friend and a caregiver. So no more. Cheers to those of you who made it work, I can’t. I’m going to give up trying on this endevour.
Parkisons disease disables the brains ability to regulate ones autonomic systems,. Arm swing, gait, loss of voice control, fascial muscle and throat control as well as diaphragm and some tummy issues. Also a whole batch if untreatable anxiety and depression.
Now I think is a good time segway into the Agnosia and my inability to put one and one together. Agonsia basically takes the pathways in between the “plans and goals” and erases the clear path from one event to the next. It also makes it near impossible to read a person’s face. Which means in times of heated conversation or debate I have no idea what is to much or to harsh of statement and thusly making me seem “mean” or unkind” when in reality I’m simply not perceiving the world in same fashion a person seeing and reacting to the same/similar circumstances or behavioral events. Sadly unless you know the person with Parkisons then it’s easy just assume that the person is a “normal” state of emotional mind. Which infact couldn’t be further from the truth. Chances are you and this PWP have no idea what’s expected of eachother.
In closing as you deal with or encounter PWP please either take a moment to educate yourself or ask lots of questions. Most disabled adults never want conflict or drama. It’s usually their biggest trigger of symptoms
I know for me it is and millions of other people with Parkisons disease. So behind and compassionate with those with any illness invisible or otherwise. I’ll leave you all with this one last thought. What would you do if your spouse or partner (s) disability needed you to sacrifice for their quality of life to be even close to the measure it used to be. Think hard and deep because I’ve gone through 4 really good, strong people who where getting paid and personally compensated for their time and efforts. So double check your motives if they are not b cause you simply care for the person and you do what you do out of love.. Don’t do it. Steer clear because you’re not ready for the level of dedication and compassion it takes to be a caregiver.
Dark eyes grow strong as the fire rages in her in brain. She’s lost a drift of bones and blood from another soul lost to her consuption of the darkness. Force fed to her from such a tender age. The blending of families and friends taking their leave of her time and again. Rage and fear so clear on her face, as the new normal set in.
So many years later, so many hearts broken, confused and destroyed by the deeds of your past. I whisper with the angels in hopes you find real peace of mind and the steady of faith like those whom truly shine of the light you crave so dearly. I gave you everything I had. My heart , my belongings and my body and soul. None of which could silenced the demons that cry from deepths of your mind and body. Your heart is to damaged for my damaged soul to heal. So now…. Now what do we do as this life’s glue has cemented me and you. What dear called angel, sugar pea of love, betrayal and dreams gone wrong in the darkness of the fears raging in the depth of our souls. Don’t be remembered as the destroyer of worlds but the giver of life and new perspective. Be the renewed gift of life the grandmothers thought you to be. All this for such sad dark eyes growing darker every day. Be the light you said you were, be the light I’ve seen the those dark eyes.