Learning to Waltz with Invisible Monsters

As my father’s Parkinson’s develops he finds himself struggling with movement. To those of us around him everything seems more or less fine, his normal shuffle, but then he will pause and look perplexed. His cognitive function is in slow but steady decline, so often we assume that it is this, but then when we ask him he says that he can’t move, or doesn’t know how to walk.

Now, it should be mentioned that if my father were a children’s story, he would be The Boy Who Cried Wolf. It isn’t that he is a malicious liar, it is merely that he likes a good story. He likes to embellish or exaggerate. He believes that everything in life should be sacrificed to serve the creation of entertaining stories and anecdotes, especially truth. This has gotten him in trouble more than once, but it is also how we got him to stop driving. He had gone in to see the Neurologist and had created this elaborate fairytale about hallucinating while driving, and then was shocked when they took his license away. (We were all quite relieved, Dad has always been a terrible driver)

I have found that with Parkinson’s the habits of one’s past become accentuated. Maybe it is that you become fixated on them. Parkinson’s seems to be an analogy for itself, where fixation, the sense of being fixed, as in stuck, is the ever present bugaboo. There is an interconnected physiological and cognitive stuck-ness that needs getting past. It is like you are in one of Dante’s outer circles of hell, where all the karma and habits that you have created and indulged in, and clung to throughout your life, you are suddenly stuck with. They have stopped being yours to control and manipulate, and are instead a heavy weight that you have to carry around, paralyzing you in space or slapping you in the face.

So, when my father says that he can’t move or doesn’t know if he can walk, in that special way he has of suggesting that this is the beginning of a great crisis, it is generally hard not to assume that he is just being a drama queen. He usually is. This struggle to walk, as with everything now, is both a situation that he can mine for drama and excitement, as well as a sad reality that he is communicating and dealing with. I can just imagine how frustrating and painful the mundane symptoms of Parkinson’s must be for my father who likes a good story.

While younger healthier old men all around him are starting to die, I think it is confusing and difficult for him to have a disease that will not necessarily kill him, so much as steadily increase his discomfort and indignity. It is so much easier to be irritated with him, at his same old habitual crap, stuff that he has been pulling all his life, rather than to feel and consider his sadness and confusion.

I watch him as he stalls, in his shuffle across the room. Tomorrow and yesterday he will run up and down the court playing Basketball with younger men, but today, he fixates on not being able to move and experiences the panic of his world crashing in on him with no-one caring. He also cannot make art the way that he used to, or do many of the things he used to do. But that doesn’t mean that he can’t still make art, or do other things. I watch him struggling with this, with all of this, as he moves across the room. Endlessly negotiating how he is going to approach his life now, and I keep waiting for him to let go and to embrace his new reality without getting so stuck in the past. I am always watching him, and waiting.