How does one begin to write the story of a lifetime of happiness and joy. A lifetime rich with experiences most people will never have, from a perspective that most people will never truly fathom the depths to whence i traveled to tell these tales of work and Joy. The loss that I’ve experienced at the hands of others and the cost of trial and error of medications Durning the first few years of my diagnosis of Parkinson’s disease.
To know now what I’d soon learn in life, that Parkinson’s was going to be the least of my troubles. Shortly after my diagnosis of PD, my marriage ended as do 85% of the marriages that encounter PD. Then just a few years later I’d get the news of metastatic throat cancer,stage four and be given 25% chance of life. Cancer… The things they don’t tell you. They don’t tell you that most of your friends won’t show up. In fact most will silently worry in their own ways or they’ll block you out of their minds until one of two things happen, you die or heal. Cancer, what can I say. I almost wish it had killed me. After 6 weeks of radiation and chemo treatment, after 10 weeks or cumulative radiation damage only two weeks after my treatment ends I receive the news. That my last grandmother was in the process of dying. So instead of minding my health I did what I would like to think any grandson would do in this situation. I flew to her bedside in Nevada until she passed. This passing as all are was hard. It was a deep pain felt in the soul of our entire family. As life does in course of us all it continues, for me I still had more loss to suffer before I’d find my way home or atleast closer to what I had left of one.
Little did I know that being without a family during the healing process of cancer would be one of the biggest mistakes of my life to be continued….
I thought I’d found unconditional love when I had a family. A wife, a daughter and son. Then I got sick, Parkinson’s disease and it’s medications wracked my body and mind.. I found myself alone with no family support. The family I created abandoned me when I needed them the most. Then came the cancer and 25% chance to live. After that I was alone again in the most dire way. I trusted a cousin to be my carer and she ruined me, I trusted the words of am old friend and tried to live again, to make myself something more than a guy with Parkinson’s, to be more than a cancer survivor. But I failed , Paula Huntley Tull stole everything from me and left me in the middle of the Arizona desert to die. By the grace of god and everything positive in the universe I was granted life, given the chance to live again and brought home to Oregon. Now I have a dog and a best friend. Someone who will always love me no matter how broken of a man I become. Once I was a whole human. Now I’m what remains of a man who just wanted a family, a man who had Always been a kind hearted , always a giving human. Anyhow this is my dog Boo. I hope you all are well and please try and remember me as the man I was and not the man you’ve made of me. Remember that I wasn’t the one who gave up, I wasn’t the one who walked away. I was the one who was asked to leave . Until we meet again in another life. Please know I gave everything of myself. I literally worked myself sick to give family everything I didn’t have growing up. I have my life for you and you took it and left me here to die alone.
This is what I know and hold onto . Someday we can be father and son once again.
It’s been years and I can still hear your laughter as a child. I remember racing home after 16 hr days at work just to read you “If you give mouse a cookie.” To lay there and stare at the ceiling and hear about your day, your thoughts and dreams. I remember thinking, you are the kindest child I’ve ever met and then thinking how proud I was to have made you, to know you and be your Father. I remember family dinner ” that what the best part of your day?” I remember how much I miss you with every breath I take and how I wish I knew that you were okay, alive, or anything besides the void of nothing that stands between us now. I remember Ferry rides and walks on the beach. Easter egg hunts and birthday parties. I remember the only thing I ever wanted growing up was to have a family, a normal family with a normal life. I think we had that for a while. I’m sorry I didn’t know how to ask for the help I needed. I’m sorry I couldn’t be the man I was needed to be. Parkinson’s disease is ruthless, the medicines used to treat it are cruel and outdated yet here we are 11 years since that fateful morning your mother and I woke up only to find I could move and ever since then everything has changed. I hope wherever you are and whatever you’re doing that you know you are loved and cherished missed and needed.
Always benjamin, your Father, your friend and your biggest admirer.