Narrative medicine pinpoints loss of autonomy and stigma in Parkinson’s disease – npj Parkinson’s Disease

Metaphors of self-perceived autonomy and stigma in the patient interview

At the beginning of the interview, the patient stated that Parkinson’s disease was a diagnosis he had expected, but never dared to directly address:

“The symptoms have been there for 5 years and still make me feel like a clown. To me these years were feeling like a total loss of control. You can compare this to like getting on a train, a train that won’t ever stop”.

In the beginning he thought of ways to hide the physical expression of disease symptoms:

‘I try to disguise the symptoms (of which you say it’s Parkinson’s disease) by degrading them as a nasal cold in which the way you breathe has a huge impact. By breathing I have also learned how to kill the trembling. For me this is a way to silence it and the only way I can control it.’

When we asked for the impact of these symptoms, the patient argued that:

‘My left arm however feels sort of damaged, because of this trembling. It doesn’t matter anymore what I do with it. When I want my hand to completely stop shaking though, I’ll sit on it, or hit it against a wall till it starts to hurt.’

The reasons why the patient tried to hide these symptoms were as follows:

“Parkinson’s disease is famous for causing many setbacks (I constantly must start over again, for instance when my writing goes wrong) and thereby it is playing its negative role. Moreover, in my experience people consider Parkinson’s disease a contagious disease.

When asked for reasons why W.B. thought people consider Parkinson’s disease a contagious disease, he mentioned the following:

“I can notice this upon looking at the people around me, who are acting in a similar negative way when seeing me. When I go for shopping groceries, people keep looking at the shaking of my arm or leg. In fact, people seem to talk about Parkinson’s disease like it’s the ‘atomic bomb’, as I heard my neighbors doing. However, I think Parkinson’s disease is an unexplained phenomenon that you cannot describe with a few words.”

Following multiple and increasingly repetitive episodes of the clinical encounter during which dopamine treatment and the side effects of treatment were discussed, the patient finally decided he did not want to be treated:

“The medical jargon and my daily experience are at odds with each other. With this jargon, medical doctors happen to have a weapon. But for patients however, these words create a huge distance between them and this experience. This is a similar setback as we talked about earlier.”

The patient mentioned that being in a hospital felt as being ‘alien to both mind and body’. In dealing with the symptoms, he stated that:

“The moment you think you have found a way to deal with it, you’ll immediately feel standing at the start again. Whatever words you choose to describe it, it never feels complete.

In order to express himself more completely next to the metaphors as depicted in Table 1, the patient chose to draw his visual representation of the illness experience. In his drawing, he imagined himself to be a ball of wool made up of many different colored strings (Fig. 1A). These strings each represent a connection in his being as a person, related to self-perceived autonomy and the world around him. These connections were being torn apart, represented in his drawing as the strings being spread chaotically across the floor (Fig. 1B). In addition (and in line with work from narrative medicine scholar Rita Charon, who advocated that ‘patients should be the curators of what we write about them’⁴) we asked the patient to comment on Jonathan Franzen’s The Corrections and Peter Dunlap-Shohl’s My Degeneration: A Journey Through Parkinson’s. He stated in these comments the following:

‘What I do miss in Jonathan Franzen’s story is that the correction can be greater than Parkinson’s disease. Rage about my hand and arm also arise in me, but I can only remain a spectator trying to do the opposite of what Parkinson’s does. I find the drawing in Fig. 3harsh and explicit because this face looks too frightened. There is no beauty in Parkinson’s disease, but there can be beauty in me as a person. I am a clown with Parkinson’s disease, but one with a smile, knowing my hand is moving in the wrong direction.’

Drawings and metaphors pinpointing loss of autonomy and self-perceived stigma in the graphic novel “My Degeneration” and the non-fiction book ‘Awakenings’ by Oliver Sacks

To study the Parkinson’s disease experience in cartoon drawings, we selected two cartoon drawings from the graphic novel “My Degeneration”. Figure 2 depicts the ‘Parkinson’s prism’, a metaphor that demonstrates how disease alters a person’s ability to make ‘sense of a distorted and parous reality’ (p. 50). Therefore, the damage inflicted by Parkinson’s disease is a reminder of ‘how far we can fall by mischance’. This is depicted in another cartoon shown in Fig. 3. This cartoon states that the frailty that comes with this disease poses questions ‘philosophy can only answer in ways civilized people find frightening’ (p. 58).

The ‘Parkinson prism’ is a metaphor that demonstrates how disease and medication alter a person’s ability to make sense of a distorted and parous reality. Image derived from the graphic novel My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-Shohl.

The damage inflicted by Parkinson’s disease is a reminder of how far we can fall by mischance. Image derived from the graphic novel My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-Shohl.

To further analyze the meaning of the ‘Parkinson’s prism’, we assessed “Awakenings” by Oliver Sacks (1973). This is an account of twenty patients who survived the 1920s encephalitis lethargica epidemic and developed post-encephalitic parkinsonism with symptoms ‘more varied and severe than those seen in common Parkinson’s disease’ (p. 14). When Sacks asked one of his patients, Leonard L., ‘What’s it like being the way you are? What would you compare it to?’, Leonard L. replied: ‘Caged. Deprived. Like Rilke’s “Panther”²³ (p. 205)’ “There’s an awful presence,” he once tapped out, ‘and an awful absence. The presence is a mixture of nagging and pushing and pressure, with being held back and constrained and stopped – I often call it ‘the goad and halter’. The absence is a terrible isolation and coldness and shrinking – more than you can imagine, Dr. Sacks, much more than anybody who isn’t this way can possibly imagine – a bottomless darkness and unreality.” (…) “At other times,’ Mr. L. would tap out, ‘there’s none of this sense of pushing or active taking away, but a sort of total calmness, a nothingness, which is by no means unpleasant. It’s a let-up from the torture. On the other hand, it’s something like death. At these times I feel I’ve been castrated by my illness, and relieved from all the longings other people have”²³ (p. 205).

More insight into the world of Parkinson’s disease is offered by Francis D, who is one of those patients that describe a fantastical-mathematical world remarkably similar to that which faced ‘Alice’. Miss D. pinpoints the fundamental distortions of Parkinsonian space, with her difficulties with ‘angles, circles, sets, and limits’. She once said of her ‘freezing’: ‘It’s not as simple as it looks. I don’t just come to a halt, I am still going, but I have run out of space to move in … You see, my space, our space, is nothing like your space: our space gets bigger and smaller, it bounces back on itself, and it loops itself round till it runs into itself²³ (p. 339).

Metaphors of self-perceived autonomy and stigma in the novel ‘The Corrections’ by Jonathan Franzen

To further study the world of Parkinson’s disease we assessed the novel “The Corrections” by Jonathan Franzen (2001). Herein we follow a protagonist with Parkinson’s disease named Alfred Lambert, a retired railroad engineer depicted with his family as His symptoms of disease particularly include a change in his perception of time:

(…) “the problem of existence was this: that, in the manner of a wheat seedling thrusting itself up out of the earth, the world moved forward in time by adding cell after cell to its leading edge, piling moment on moment, and that to grasp the world even in its freshest, youngest moment provided no guarantee that you’d be able to grasp it again a moment later.” (p. 66)

These time-altering events experienced by Albert, manifest themselves in the way language is processed. This way Albert’s ‘Parkinson’s prism’ illustrates how language and being cannot be understood apart from one another:

“He began a sentence: “I am – but when he was taken by surprise, every sentence became an adventure in the woods (…) but in the instant of realizing he was lost, time became marvelously slow and he discovered hitherto eternities in the space between one word and the next, or rather he became trapped in that space between words and could only stand and watch as time sped on without him (…)” (p. 11)

In fact, the ongoing characteristics associated with Parkinson’s disease, seem to amplify ‘Parkinson’s prism’ effect on the self as narrator. Particularly because the trembling of both hands make Alfred feel betrayed:

“These shaking hands belonged to nobody but him, and yet they refused to obey him. They were like bad children. Unreasoning two-year-olds in a tantrum of selfish misery. (..) (p. 67).

Similarly, as our patient was arguing, Alfred also thought of a way to hide the physical expression of disease symptoms because ‘Parkinson’s prism’ altered Alfred’s ability to make ‘sense of a distorted and parous reality’:

“Alfred took pleasure in thinking about chopping his hand off with a hatchet. He wanted to let the offending limb know just how angry he was. If only to show how little he cared for it when it insisted on disobeying him. It brought a kind of ecstasy to imagine the first deep bite of the hatchet’s blade into bone and muscle. But alongside his ecstasy there was also the unshakable feeling of despair. He and his hand had been together for his entire life after all. (p. 67)”

“He would have liked to remove his legs entirely. They were weak and restless and wet and trapped. He kicked a little and rocked in his unrocking chair. His hands were in a tumult. The less he could do about his legs, the more he swung his arms. The bastards had him now, he’d been betrayed, and he began to cry. If only he’d known! If only he’d known, he could have taken steps, he’d had the gun, he’d had the bottomless cold ocean, if only he’d known.” (p. 555)

Erving Goffman has argued that stigma particularly results from the eyes of others: “While the stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others… and of a less desirable kind – in the extreme, a person who is quite thoroughly bad, or dangerous, or weak” ^{25(p. 12)}. Likewise, Alfred is seen in the eyes of his son:

“Alfred seemed forever on the verge of derailing as he lurched down hallways or half slid downstairs or wolfed at a sandwich from which lettuce and meat loaf rained; checking his watch incessantly (..) the old iron horse was careering toward a crash, and Gary could hardly stand to look.” (p. 171)

For social situations, Goffman has argued that ‘with an individual known or perceived to have a stigma, we are likely, then, to employ categorizations that do not fit, and we and he are likely to experience uneasiness’ ^{25(p. 31)}. Also, in dealing with bladder dysfunction, another illustration is given of the way Alfred is being frowned upon by others, and how this impacts self-perceived autonomy and stigma:

“The problem was that his nervous system could no longer be relied on for an accurate assessment of his need to go. At night his solution was to wear protection. By day his solution was to visit a bathroom hourly and always to carry his old black raincoat in case he had an accident to hide.” (p. 329)

Metaphors of self-perceived autonomy and stigma in the novel ‘Elena Knows’ by Claudia Pińeiro and in John Palfreman’s The Bright Side of Parkinson’s

To further understand how the symptoms of Parkinson’s disease can create stigma, we studied how the main protagonist (Elena) in Elena Knows deals with disease symptoms. Elena is a 63-year-old woman with Parkinson’s disease who is trying to deal with the basic aspects of living a normal life, like “Just walking, to get to the ten o’clock train.” (p. 7)

“From her position, seated, she tries to lift her foot in the air, the foot now responds to the message and rises. So she’s ready, she knows. She places her palms on her seated thighs, she puts her two feet together so that her knees are at ninety-degree-angles, then she crosses her right hand to her left shoulder and her left hand on her right shoulder, she begins to rock back and forth on the chair and then, with the momentum, she stands up.” (p. 7)

Characteristics associated with the disease, like the shuffling gait or the stooped posture, instigate a self-perceived sense of stigmatization and disapproval from others. Goffman has argued that this: “(..) is called a stigma, especially when its discrediting effect is very extensive. Sometimes it is also called a failing, a shortcoming, a handicap. It constitutes a special discrepancy between virtual and actual social identity”^{25(p. 12 – 13)}. Likewise, Elena questions her self-perceived sense of identity:

‘What’s left of you when your arm can’t even put on a jacket and your leg can’t even take a step and your neck can’t straighten up enough to let you show your face to the world, what’s left? Are you your brain, which keeps sending out orders that won’t be followed? Or are you the thought itself, something that can’t be seen or touched beyond that furrowed organ guarded inside the cranium like a trove?’ (p. 72)

When disease symptoms progress into a failure to swallow with normal frequency, Elena starts to experience the reaction of others. As such the novel puts particular emphasis on the experience of social interaction. This could, like Goffman has argued, make us, “believe the person with a stigma is not quite human. On this assumption we exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances”^{25(p. 15)}. This way, Elena (believed to have less chance in life) is contrasted with a woman and her young daughter as follows:

‘A woman and her daughter sit on the bench next to Elena. The girl’s feet don’t reach the ground, Elena watches her swing them in the air. She knows the girl is looking at her. She knows that she leans over to her mother and whispers something in her ear. I’ll tell you later, the mother says, and the girl swings her legs faster than before.’

Goffman states that ‘the stigmatized individual is likely to feel that he is ‘on’, having to be self-conscious and calculating about the impression he is making, to a degree and in areas of conduct which he assumes others are not.’ (p. 25). In his New York Times first-person illness narrative, John Palfreman argues that this state of being self-conscious and calculating about the impression an individual with Parkinson’s disease must make is because:

‘People with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles get weaker. Our movements slow down. Our hands fumble simple tasks like buttoning a shirt or balancing spaghetti on a fork. Our faces no longer express emotions. Our voices lose volume and clarity. Our minds, in time, may lose their sharpness and more’²⁴.

In the beginning of his essay, Palfreman argues that what is responsible for this, is something that ‘keeps sending out orders that won’t be followed’:

These bad signals disrupt communication between the brain and the muscles. This is one reason people with Parkinson’s have trouble picking up small objects and moving around fluently: Their motions are too hesitant, too small, too slow, too rigid, too shaky, too feeble, and badly timed. These are symptoms of a brain in conflict with itself²⁴.

In Palfreman’s view, Parkinson’s disease disrupts the narrative coherence of the stories told by persons with Parkinson’s disease because, ‘When the production of dopamine is interrupted, as it is with Parkinson’s, the signals passing through the basal ganglia are garbled, and it ends up giving poor advice.’’This is because:

‘Having Parkinson’s feels a bit like going on vacation in another country and having to drive on the “wrong” side of the road. Driving is one of those activities that we outsource, in large part, to the basal ganglia. When an American, who has spent thousands of hours driving on the right side of the street, tries to drive in England, his learned habits are a liability’²⁴.