Do those in your immediate circle (family & friends) understand the challenges you face with Parkinson’s? If not, what might a creative writer express that could help relatively healthy folks relate to us better?
I’m not talking about sharing links to medical information, I’m asking how things feel on the inside, regardless of how they might appear. Not every Parkie presents the same way. One hour I feel great and move well, but a few hours later you may find me shaky, forced to cancel exquisite plans.
Repeatedly, we see messages in our community that express a deep despair and much suffering over misunderstandings, abandonment, and behavior that confirms a lack of education about Parkinson’s, anxiety and depression. This additional anguish is unnecessary. We all have enough to handle! It’s a challenge though, depending upon the age and level of awareness in our circles.
Prior to and even during the first 4 years of my dx, I was not aware of this iceberg effect, so how can I expect anyone around me to just “get it?”
My goal is to find language that gets as close possible to the root of cruelty of disease. Bleeding onto the page as we have been informed to do by Hemingway is not something I expect to master in this lifetime, but I’m going to give expression a shot...for all of us.
Have you ever read a story or a book that you felt in your own body as you were one of the characters?
I’d be grateful if you might share YOUR THOUGHTS on what part of the Parkinson’s or dystonia or Ataxia or MS (any neuro disorder) experience you feel is the most misunderstood?
If people who love us and who mean well are missing the mark, then communication is the answer.
Here, an image of my youngest, who was “So over talking about anything, Mom,” on this day. She just wants to be a teenager with a consistent place to land, but Parkinson’s continues to be an unpredictable drag...hard on all of us.