Recently, my thoughts have been percolating in a highly unusual manner. I have not been at a loss for words. It is quite the opposite. Too many words are racing to leave my head and land on the page.
I’m considering the overload of environmental toxins worldwide and in my backyard. I have been dreaming of a time before my father—a once remarkable, charming man—was struck down with a neurological disease called Multiple System Atrophy.
Long ago, I stopped asking myself, how did this happen? He lived a clean life and was athletic, strong, and funny, to name a few things. He participated as a leader in the community and, with my mother, raised five daughters.
He was an avid golfer—his retirement home was in a golf community. I wish I could remember which hole their house was near, maybe the clubhouse. All I know is that he was there.
After his diagnosis, we used to talk about where the environmental toxins may have seeped into his being. The way our society carelessly uses chemicals, herbicides, and other poisonous substances, there are many possibilities. However, he continued to mention golf. He talked about the posting of warning signs on the days they sprayed. (But how bright and green it all is.)
My father reached a point in his disease—Multiple System Atrophy—when he experienced sundowning. It was challenging to observe this happening to the man I honored and looked up to throughout my entire life. He was the rock, the ultimate reliable protector. The most frightening monsters in the world could be chasing me, and I knew I had my father’s protection. He often came to the rescue when I awoke, screaming from nightmares. He always said it’s only a dream. You’re okay. You’re here. When I was sitting beside his bed, he urgently whispered for me to hide quickly because of the terrifying people in the hallway. It was my turn to offer words of comfort and reassurance. He was getting somewhat impatient, insisting that we hide under the bed. The next idea was to run into the bathroom and lock the door. That idea was dismissed when he imagined that the toilet was an electric chair.
Wondering how my sister and mother faced this daily, I took a deep breath and talked him through it. These threats were real to him. Telling him that it was imaginary or not happening wasn’t the answer. He needed me to understand that it was, in fact, confirmed. I did not diminish his experience, but I relied on an old trick I used when my children were toddlers engrossed in a bad idea. If the logic is not effective at first, try the art of skillful distraction or removal from the setting. This is not to diminish learning opportunities for children but to eliminate unfounded fear or potential harm. How could an experience be unfounded if the person engulfed in it cannot find a way back to a calm and quiet place? It was one of those times when minutes seemed like hours suspended in a dreamlike place. We were in his reality. I asked if perhaps the people were helpers, and he got it wrong and that the man with the long white beard was there to guide him. I said, “Dad, what if these are angels, and you just don’t recognize them?”
It was enough for him to freeze in the moment. Speechless and with wide-opened eyes, he looked at me as if I had said the most shocking statement ever falling upon his ears. It was the Are you crazy? look. A thought flashed through my mind, I was in it, and there was no turning back. There were two options (so I thought). He would want to know more about the angels or kick up the fear factor more.
The pause, the look of astonishment, was suspended for several minutes, but the illusion of time was already altered. I reached into my backpack and pulled out Walden, or Life in the Woods by Thoreau.
Ignoring my bookmark, I opened it and began reading wherever I landed. I didn’t have time to fuss about where I left off or if I should start at the beginning. I just needed to do something. At that point, I was operating on pure intuition.
Still puzzled yet somewhat calmer, my father fussed with his blanket and settled into his pillow. He continued to look dismayed, but I had distracted him long enough to get his attention away from the people he thought were roaming the halls and out to get us.
As time went on, before leaving, I'd say, Trust the angels, Dad. They are here to help you.
He reached a point where he nodded in agreement. Did he have other episodes, like swatting away flies that only he could see? Yes, but I’ll talk about that another time.
✵✵✵
Multiple System Atrophy Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, and motor control.
MSA was formerly called Shy-Drager syndrome, olivopontocerebellar atrophy or striatonigral degeneration. MSA shares many symptoms with Parkinson's disease, such as slow movement, rigid muscles and poor balance.
Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses gradually and eventually leads to death. <https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153>
Oh, Mj, this hurt my heart. It is so hard to watch a formerly vibrant parent slip away like this. Sending love. xoxo