+400 Days

Approximately 400 days ago, my father was diagnosed with ALS. Thus the title of the post: +400 days (since diagnosis).

But before getting started, an explanation of the title of the blog, "Life transcends me". Understand that I was still reeling from the events and emotions of +397. Understand that if right now I could kill my father legally (aka assisted suicide), I think I would want to grant him this. I know that at this point, death would be a release for him.

I love my father, and he is my role model for what it means to be a man and a father in this world. We have had so many wonderful times together, and I wish we could still keep having them. But reality is reality. And life transcends me.

This is my first post about on this blog. I started the blog to be able to write my feelings down so that I could deal with them more objectively / more as external feelings. I have jumped right in on this, without providing enough background to justify the narrative. I think my subsequent posts provide better narrative for others to understand my experience. This post is for me.

Meditating, trying to calm my mind: Given the thoughts I related above and below under "Losing my center", I trust you understand when I state that my mind was going in every direction at about a zillion miles an hour.

When I meditate, I normally switch on a series of arias I found on YouTube. I find this very soothing. Today though, the arias weren't working. So I switched to Sarah McLachlan. The first song was "In the arms of the Angel". And as the music flowed over me, I remembered and re-centered around my angel - Caroline. When I am lost, Caroline has always been the one to help me find my center.

Losing my center

Last night we went to visit my folks - my father had just been released from the hospital and was coming home. I/we wanted to be there to greet him and bring some merriment into my parents lives... it didn't work out that way. By the end of the evening, my father had soiled himself, the hospital bed that had been set up for him had broken. He was/is in more pain than his pain medication can resolve. My mother was declaring the whole idea of leaving the hospital for palliative care at home a disaster. They have finally gotten a person (Lorna) to help my mother and help care for my father, but I doubt that anyone got any sleep.

I am caught between so many emotions: Wanting to help my parents, who were there for me 100% when I had my brain cancer. Wanting to help my parents itself comes with several emotions, as they aren't the best (I'm sorry mom and dad) at accepting help. Another emotion I have is not to hide my face - not to shirk from dad's ALS progression, from the pain, the poop, the pee and his increasing inability to communicate. In fact, the last is one of the hardest emotions to deal with. For while I expected his voice loss and I think have adjusted to this, the texts and notes he writes on his phone and notepads have been increasingly incoherent. There's the emotion of helplessness when he wants something so desperately, but he cannot communicate what it is he needs.

Back to the "Arms of an Angel (aka Caroline)": This is what I need today, and is the where life / god / the mystery has brought me. I need to be with my Caroline, my rock, and our kids. I have known for a long time that Caroline and the kids - but Caro in particular is the source of my strength.

So today I am starting the morning by devoting myself to thoughts of my wife: My angel, my rock, my path to centering myself, to understanding... to truth. I am putting myself in the arms of my angel, trying to find my center amidst all that is happening and all the emotions.

-Another thought-

While it might have been better if I had started this blog 400 days ago, I think it's a really smart, good thing that I've started this today. I have been using work on my project: Adding, refining, and fixing features and creating supporting documentation, and focusing on this at times so as not to think about other things in my life, such as my dad's ALS or my job, especially when I'm trying to sleep. I am hoping that blogging my feelings here will help fill the gap that being essentially finished with my project has opened.