Shulman, Lisa M. MD
Morton Kondracke's Saving Milly: Love, Politics, and Parkinson's Disease tells two compelling stories – one is about the personal impact of chronic illness on an American family, and the other is a Washington insider's perspective on the politics of conquering disease. But the “story behind the story” is a startlingly honest portrayal of how the challenge of serious illness simultaneously transforms the lives of both the patient and the caregiver.
Mr. Kondracke, a well-known journalist and political pundit, set out to write a tribute to his wife, Milly, who has endured a progressive neurodegenerative disorder characterized by severe parkinsonism and numerous severe injuries from repeated falls. In the process of describing their battle with illness, Mr. Kondracke not only reveals how chronic disease challenges the resilience of both patient and caregiver, but also how it unravels and remodels the fabric of a relationship.
Medicine rarely focuses attention on adaptation to chronic illness, even though successful adjustment to it is the basis for restoring quality of life. Premorbid behavior patterns seem likely predictors of resilience and success, but the story of Saving Milly is most unexpected in its portrayal of the unpredictable ways that individuals respond to illness.
SUBTLE SIGNS OF ILLNESS
A subtle change in handwriting and a trace of tremor in a single finger were the innocent initial signs of parkinsonism when Milly was 48 years old. The ensuing 12 years chronicle a rapid progression of symptoms including loss of balance, dystonic spasms, dysarthria, and dysphagia.
Neurologists are familiar with the challenges posed by an atypical parkinsonian syndrome, referred to as “Milly's syndrome” by her physicians, given the inability to arrive at a precise diagnosis and the limited relief afforded by both conventional pharmacological and surgical therapies.
Prior to her illness, Milly is a genuine firebrand and born activist, possessing a self-assuredness that eludes Morton. He is irresistibly drawn to Milly's strengths, finding fault with himself by comparison.
A magnet for people and projects, the “old Milly” was irrepressible, such as when she lectured a Washington Post columnist on the importance of childrearing after catching him looking for someone more interesting to speak with at a Washington reception.
By contrast, Morton describes himself as possessing “an inferiority complex married to snobbery,” intimidated by those he believed were above his status and dismissive of those below it.
SHIFTING FAMILY ROLES
Before Millly's symptoms become apparent, she is portrayed as a can-do person, rescuing both family and friends from one problem after another, including motivating Morton to give up alcohol.
In contrast, Morton is plagued by insecurity, obsessively judging himself as condemned to “mediocre above-averageness” and driven to alcoholism by feelings of inferiority both at work and at home. Mr. Kondracke is at his best when he is being more honest with himself in public than many of us are in our most private moments.
These familiar roles are abruptly transformed by the onset of Milly's symptoms. Milly's confidence and resolve falter from the outset, replaced by anxiety, insecurity, and despair. Twelve years later, her inability to come to grips with her illness and find peace of mind remains an added disability to her motor symptoms. Simultaneously we see her husband infused with a dedication and purpose he was lacking, as he pledges to himself following the diagnosis, “This is the one thing in your life you are going to do right.”
And indeed, he does. In the face of mounting difficulties, Mr. Kondracke searches for opportunities for reassurance and tenderness; his descriptions of his unfailing love for Milly are genuinely uplifting. Just as the author questions whether his faith would withstand his own affliction with a similar illness, readers will wonder whether they would have Mr. Kondracke's loyalty and perseverance. Is it the author's personal knowledge of insecurity that forms the roadmap for how to respond in Milly's time of need?
As a regular panelist on “The McLaughlin Group” and “The Beltway Boys,” and as Executive Editor and columnist for the Capitol Hill newspaper Roll Call, Mr. Kondracke's natural turf has been analyzing the political scene, not playing politics. He shied away from using his bully pulpit for Parkinson disease initially, partly due to concerns of journalistic conflict of interest and partly due to a surprisingly naïve view of disease politics. When he realized that scientific research budgets are a political football just like any other issue on the hill, he was gradually emboldened to assume a central role in Parkinson advocacy.
The description of the struggle to pass the Udall bill to increase research in Parkinson disease is a microcosm of legislative battles on Capitol Hill and is well worth reading. Clout, connections, heart-wrenching testimonials, and the star power of Michael J. Fox team up to make the Udall bill a reality in spite of bitter rivalry. No, it's not bitter partisanship this time, but rivalry between different disease groups and even between various Parkinson foundations. There are valuable lessons here about the many barriers to new legislative initiatives.
Saving Milly documents one family's struggle to rescue their loved one from a chronic, disabling disease, but curing Milly's illness is not the only means available to make Milly whole again. A tenuous balance exists between the need to find solutions to eradicate symptoms and the need to come to terms with illness and restore peace of mind. Just as psychological adjustment does not mean submission or resignation, working towards a cure need not give rise to unrelenting emotional turmoil.
Milly's diagnosis gradually results in a reversal of roles for wife and husband. Mr. Kondracke writes that he felt as if Milly needed him more than he needed her for the first time in their marriage, and that in the process of taking care of her he became a different and better person. Milly functions, but is psychologically devastated, personally and spiritually.
As neurologists confronting patients with chronic illness daily, we still know very little about the impact of premorbid personality on the individual's response to illness and disability.
Figure. Saving Milly...Image Tools
Is psychological adaptation to chronic illness simply a function of premorbid personality and endogenous disease-related factors? Or can targeted interventions that restore a sense of dignity and control counteract the emotional devastation that many of our patients experience? Are there societal factors at work, including the expectation of a cure and the stigmatization of disability that block adaptation?
Milly and Morton Kondracke both deserve high praise for working through their difficulties on the public stage, where we all can benefit from their experience. The author writes that he spent much of his youth yearning to become somebody different. And indeed it is a different person who writes, “This has become my philosophy of life: do the best you can playing the hand you are dealt, and ask God's help every step of the way.”