What’s left after it’s said and done

Journal entry 23-February 2019
Everything in my has changed since I last wrote here. Everything is gone, from my childhood on until now. I hold a few small treasures, a torn photo, or two but nothing more. far less than Steve martin in “the Jerk”

Since 2012 when I was forced to stop working because of my Parkinson’s Disease everything has gone down hill, some my fault some not, regardless it’s a soul breaking kind of pain that only those who have experienced the death of someone one you loved with all your everything can even begin to grasp . yet I sit here and write in my journals in hopes someday someone will understand the other side of Parkinson’s disease. We always hear about the survivors stories from the caregiver perspective about how hard it is to watch your loved one wither and fail, literally fall apart PIECE BY PIECE IN FRONT OF YOU. it takes a special person share that journey with, someone I’ve yet to meet. Someone whom may not even be. Since last I wrote here I’ve had cancer its treatments and am currently two years cancer free and battling a huge host of health setbacks because of the treatments and how they relate and have effected my Parkinson’s .

The new wave of anxiety and depression has risen far beyond what I expected. It’s always such a trip to experience a panic attack full bore that has your heart racing and mind spinning all while standing there trying to hold your shit together ordering coffee. Or my favorite is when I’ve been in stage 7-8 pain for weeks straight and someone asks how I’m doing, and all I can do is say oh ya know a little stiff, sore lol ya know PD ha ha. when in the real world I want to scream at the top of my lungs and say please stop the pain, stop the mental torment and emotional rollercoaster hell of Parkinson’s disease. bring back my kids and wife, the life…. But then I also think. I’m the one alone, not them…. They have money, luxury, freedom and are free of me, their biggest burden and if I was meant to be then so be it. Anyhow I’ve lost my point and focus. I’m not going to write this anymore today. I think the hardest thing about watching this happen to my life. I feel helpless to stop or change how the world perceive me or how I perceive it. Again I find my mind wandering. summation of ten years of Parkinson’s , it sucks, I live in pain and a constant state of numb to on fire both physically and emotionally. I made the personal choice to not use anymore pharma narcotics for pain about two years ago I’m glad I did but man has it kept my pain level high 6-7 always I wake stiff as a board and stretch for 3 hrs. before I get out of bed. almost everyday. up at 3-4AM out of bed making coffee 6-7am back to sleep at 10am lol. really though, truth. because thinking and processing emotions has become more and more directly attached to my physical body, AKA advancing PD simple tasks that one normally does cause me fatigue. like real just ran a flight of stairs tired to put the dishes in a cupboard above my should height or folding laundry lol the worst arm strain ever and muscle failure. like right now my right shoulder is cramping to the point where I need to be done. writing.
please know I love you all dearly. I am lonely and I am in great pain but I think that this is just my life, it has never been easy for me, I worked hard for everything I’ve ever lost or had taken from me. thanks for listening over and out journal entry completed.
Benjamin 2019

4 thoughts on “What’s left after it’s said and done

  1. oh Mr B, how I wish I could remove the pain, fatigue, anxiety, depression, spasms, headaches, all the fun things people just can’t understand from all of us whose bodies decide to attack themselves. Your writing will I’m sure help people to understand the journey you’ve taken and so many of us take.
    I understand the little activity conundrum all too well, my OT is trying to guide me in using a timetable in order to encourage me to remember to take breaks before I go to far and to do a mixture of activities etc….not sure it’s helping my memory/concentration/fatigue levels but it’s intriguing.
    I hope today you can rest and find joy wherever it may appear.
    Love and light to you dear Benjamin
    Mel xx

    Liked by 1 person

    • Thank you so much my dear friend. It’s become so much more challenging than I ever imagined . Being alone and trying position myself for the future while I still have cognitive ability to do so feels like an absolute race against time 😢 which in reality for me it is. Someday I hope to find peace again but I don’t know. I will paint and write. I’m moving to the country away from everything in hopes to lower my stress levels.

      Liked by 2 people

      • I’ll be sure to share, and thank you ☺️ yes that’s been part of the process is making sure I’m in Oregon where I’ve the maximum amount of benefit support. Now I just need to get my new social worker on pace with my parkinsons disease and things should go a tad more smooth. I’m finding the less I need to depend on anybody for anything besides the pharmacy for my PD meds the better. I do love the country, it eases all these thoughts I have and gives me this huge canvas to spread them out to see. If that makes any sense.


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