Originally developed as a model of preparation for death, Dr. Edith Kübler-Ross’ five stages of grieving-denial, anger, bargaining, depression, and acceptance- are often applied to life-changing events. Receiving a diagnosis of Parkinson’s disease certainly qualifies as life changing and Kübler-Ross’ model is helpful for guiding an individual in a quest to come to terms with the diagnosis.
It is almost standard practice to approach the model as a step-by-step sojourn, beginning with denial (“It can’t be PD. The diagnosis must be wrong”) and ending with acceptance. However, this practice presumes that the stages are sequential and unidirectional. They are neither. One does not simply progress through the stages one after another, completing one then graduating to the next. In fact, it is quite common for an individual’s journey through the stages to be marked by advance, retreat and even leaps over a given step altogether. Some people get the sequence scrambled, some get stuck in a given stage, and some people find the whole Kübler-Ross model doesn’t even apply to them.
For all these reasons, I think it is more fruitful to discuss Kübler-Ross’ final stage by asking, what does it look like? I think a person who has reached acceptance might:
• Stop fighting the disease and begin fighting to extract the best moments from every day
• Recognize that the future will be different because of the disease and begin crafting a new direction
• See the disease as one aspect of overall health and begin exercising and eating right not as an attempt to cure or arrest PD but because it is important to that overall health
• Feel a sense of gratitude that so many effective treatments are available for a disease that once killed by completely immobilizing a body
• Find a purpose in life that transcends the disease and allows one to leave the world a better place
• Strive to reduce stress because it makes PD symptoms worse than they need be
• Enjoy family and friends by basking in the warmth of relationships crafted over many years
• See tomorrow as full of challenges, many coming from the physical difficulties of PD, but far more certainly because life is complicated for everyone
The list is not exhaustive nor is it in any particular order because everyone’s acceptance of PD will look substantially different. Like the other stages, acceptance is not a secure destination but rather a state of mind that allows a person to live well with PD. That state of mind can come and go. There will never be a sense of having arrived but rather one of wanting to spend more and more time in that state.
The Kübler-Ross model can be illustrative but it is often made too concrete. To many it implies a stairway one must climb to come to terms with a jolt to one’s existence. Few things in life advance in discernible stages and grief is no exception. It is perhaps better to view the five stages as mileposts for a journey toward living with circumstances that cannot be changed.
Ultimately, for everyone who is diagnosed with PD, it is that journey toward acceptance that makes all the difference.