While at the recent 6th Annual Living Well retreat sponsored by the Parkinson Foundation of Western Pennsylvania, I heard a familiar refrain during informal discussions with attendees:
“I am a burden to my family.”
My Mac’s dictionary defines “burden” as a heavy load. There is also a more figurative definition for the word, one describing duty or misfortune that causes hardship, anxiety, or grief. It is helpful to look at both definitions.
The first definition implies an inherent quality that exists in the entity itself. That is, the person with PD is a heavy load the family must bear. I think this is the definition most people have in mind when they describe themselves so harshly. It encapsulates a feeling of shame and a sense that one’s condition is being thrust upon loved ones who are then forced to carry it.
I believe it is helpful to consider the second definition. In fact, this definition closely follows my translation of the burden refrain. Parkinson’s always occurs in the context presented by the person who has the disease. This context is not limited to the physical. It also draws upon the emotional (e.g. anxiety, grief), the personality, and the behavioral. More simply put, it is the manner in which the person with Parkinson’s meets the hardships the disease brings. One can act and behave in ways loved ones find burdensome. Burdensome behavior is open to the possibility of change.
I once heard John Bradshaw, a pop guru of the 80’s recovery movement, talk about the necessity for making the distinction between shame (“I am a mistake”) and embarrassment (“I made a mistake”). Bradshaw’s observation is analogous to the two definitions for burden, inherent vs. interactional (contextual) quality. When a person self identifies as a burden, shame creates a deeply held belief the situation has no resolution. When a person comes to realize that their responses to the Parkinson’s may be burdensome to family members, it is possible to explore ways of behaving in a less burdensome manner.
It is unfair and incorrect to call any person with Parkinson’s a burden. How that person responds may fairly and correctly be described as burdensome. Change is possible.