On being well

  

The doctor had walked out of the room to make a phone call. He was irritated because the middle-aged patient with Parkinson’s Disease had come from the nursing home without a medication list. On top of that, the patient had been given his morning meds, which were supposed to have been withheld for the sake of his neurological exam that morning—our goal was to assess the patient’s function off all meds, then administer them and reassess to determine their efficacy in relieving symptoms. I knew that the actual visit time would be limited because of the doctor’s time on the phone with the nursing home staff, and I felt bad that the patient was being shorted for reasons he couldn’t control. Up to this point, he had been limited in vocal interaction, giving only one or two-word answers to the doctor’s and nurse’s questions. I engaged him in conversation, listening to the content of his response and observing the evidence of the physical manifestations of his disease as he sat and spoke. 

I asked which facility he lives in and was relieved to recognize the name of it as one of the better ones. I asked if he was happy with his care there, and he said he was—that it was much better than living in his disabled sister’s bug-infested home where no one could prepare meals for him or help him up when he fell. She was his only living family member. I noticed a mild resting tremor in his right hand as he spoke in a weak voice, as well as writhing movements of his entire body, most pronounced in his legs. The tremor and soft speech were from his disease itself, and the writhing movements, termed “dyskinesias,” were from the treatment. Controlling the tremor and the “frozen” spells of Parkinson’s Disease sometimes means moving too far in the other direction. I asked him what bothered him most—his tremor and freezing spells without his medication or his dyskinesias with them. He, as most of these patients do, confirmed that the tremor and freezing were the most frustrating symptoms. The dyskinesias didn’t really bother him, even though the instability they caused required him to use a walker or wheelchair. Many patients would rather move too much with uncontrollable writhing than be statues or limited by a severe tremor. 

I asked him what he did for work before his diagnosis. He had worked in construction until the loss of dexterity in his hands made the work impossible. “I’m still an artist, though,” he said, continuing with a weak voice but now also with a light in his eyes and the hint of a smile—a rare sight in a patient with Parkinson’s. He proudly described his latest paintings, which are on display in his facility. “Sometimes they take an unexpected twist when my hand moves the wrong way, but I just roll with it, you know?” He felt that his disease had made him more creative as he incorporated unplanned strokes into the design—more of an artist than he had been before. 

I was already so moved by getting to know this patient and by his outlook on a life that many would say had been wrecked by disease. Nothing could have prepared me for what he did next.

I crossed the room and sat next to him at the doctor’s desk. I sensed that I had gained his trust and felt the freedom to continue with aspects of the exam that the doctor would not likely have time for. I passed over a piece of paper and a pen, asking him to draw spirals for me. He complied, and his drawings were characterized by the classic sinusoidal wave of a Parkinson’s tremor. I then asked him if he would write a sentence for me, intending to speak the sentence aloud and use his written version as a test of memory and an assessment of his handwriting. Before I had time to speak the sentence, I noticed that he had already begun to write. I remained silent, more curious about the sentence he already had in mind than I was about his ability to recall the words I was planning to assign. He finished his short sentence and passed the paper to me. On it were four tiny words:

“I will be well.”

Was it hope? Was it a prediction? I don’t think it was either. I think it was a decision—a choice he had made. It was too much for me, being halfway through a pregnancy that has affected my emotions significantly more than it has affected my body. I hoped he couldn’t see the tears that threatened to betray my heart. It’s not that I felt sorry for him, although his story could provoke tears for that reason. I was simply overwhelmed by the privilege of being in the presence of greatness. It doesn’t seem fair that I will soon be paid to learn more from some of my patients about what it means to be human than they will ever learn from me about a disease process they can google at home. 

This artist had mastered the art of living—and his life is a masterpiece I could stand in front of for hours. When I examine my own life, I am far less impressed. What have I done with the unexpected strokes—the ones that smeared across the images I had painted of God and of my marriage? Why do I now stand frozen in front of the canvas, thinking and feeling and weeping, but unable to express or create—even unable to write more often than once in a month?

Do I have hope—can I predict that things will drastically change? Honestly, I sometimes can’t see it. It’s hard to imagine that my faith and my marriage (even as love-filled as it is) can ever be what I thought they might be. But there is an art to living, and what I have failed to deeply, creatively explore is the possibility that there may be something magnificent that comes from the aspects of my life that did not go as expected. What this patient reminded me of is that whether I incorporate aberrant brushstrokes into a masterpiece or scrap the entire canvas is completely up to me. 

I choose to be well—more later on what that means for me.

Image: Vilhelm Hammershøi, Interior with the Artist’s Easel, 1910.jpg, Wikimedia commons, public domain

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2 thoughts on “On being well

  1. I love this real life story metaphor. To be actively creating while having to go with the sudden strokes of life. AND that powerful statement of choosing to be well…choosing to be well in all its fullness. Thank you for this message J.

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