personalities, our jobs and home life and of course our extracurricular interests. But now life is about Russ with a smattering of me and that's OK, it is exactly what it needs to be on this journey of Parkinson's.
I am reading the book "EVERYTHING HAPPENS FOR A REASON AND OTHER LIES I'VE LEARNED" by Kate Bowler. A pastor friend from TX recommended it. A sentence I read first thing this morning, hovering in the sunshine eating a late breakfast on the back porch, said "These letters sing with unspoken love in the face of The Great Separation 'don't go, don't go, you anchor my life'. The author has stage IV colon cancer and is journaling about the experience, the decisions, the treatments and the thoughts people shared during her journey of pain.
People want to help, but they don't always know what to say. Some people say absolutely nothing in hopes of not saying the wrong thing, while others look away in hopes of not making uncomfortable eye contact. I mean really, how do they know what it is you need to hear, they aren't mind readers. Then there are those who have a lesson they feel you need to hear. They think they are saying 'the right' thing for the right reason just when you need to hear it (such as "everything happens for a reason") and that you will go to sleep that night with newly minted, peaceful calm. In fact, this 'lesson' might just feed your despair But no one can measure a person's inner will. No one can truly sense the long, long haul being played out after your particular diagnosis.
For Russ and I, we aim for a gentle silence between us, wrapping us in the knowledge that we love one another for exactly who we are, foibles and all. Though life can be as fragile as glass, we know when a scary or trying moment has passed, we can gather ourselves up and reach again for the strong countenance necessary for life with a degenerative disease. PD is exhausting. Caregiving is exhausting. Anticipatory grief is exhausting. Exhaustion can be uncomfortable, but perhaps some of that is loneliness. By 'naming it', I think we can solve a bit of that tired feeling giving us a subliminal boost for moving on. Being lonely is just a natural byproduct of staying home so much, not being able to engage in social events with every connection away from home becoming more and more difficult. Thank God I live with my best friend!
I don't intentionally begin a post thinking about the beginning, middle and end. Generally I have one thought, quote or sentence in mind and I let the rest flow from heart to post. It's a happening. Love exists, but love needs a story. My posts become our story bit by bit. Today? "Don't go, don't go, you anchor my life."