Wednesday, December 8, 2010

Mary Elizabeth Anania Edwards (1949-2010): Resilience, Advocacy, Her House In Order

At least in the North American media, the death from breast cancer of Elizabeth Edwards, known primarily for her role as a political wife turned health care advocate, on December 7, 2010 at her home, has been a major news topic. Elizabeth Edwards is also known for the career and marriage ending scandal involving her husband John Edwards, North Carolina State Senator, then US Senator, Democratic Vice-Presidential Candidate 2004, and Presidential Democratic Primary Candidate 2008. There is much information available online about Elizabeth Edwards' life, illness, and death, but I would like to focus here on 3 aspects of her life which I think are most noteworthy: her modeling and sharing the human capacity for resilience; her health care advocacy for others as she herself was ill and undergoing treatment; and, her ability to put her house in order as her life was ending.

Cancer Metaphors: War vs Resilience

That I am aware, Elizabeth Edwards did not embrace the "war on cancer" "battling cancer bravely" or "cancer warrior" metaphors which are prevalent in North American discourse, and which were and are used by others about her. Rather, she used the model and metaphor of resilience, which she described as necessary and common to cancer patients, and before that to grieving parents. She was clear that she was not always brave, or noble in her responses, and that she did what most do: pull themselves together and find a way to live as happily as possible. She encouraged those who were flagging, as she herself had needed support and encouragement. Taking action, by telling her story, creating a legacy for her departed son Wade, becoming engaged politically both informally and formally, writing, and continuing normal activities of family, mothering, and friendship within her limits were all part of her accomplishing, maintaining, and modelling resilience.

In my experience, that is what most cancer sufferers do. They find a way to be resilient. They seek and suffer through recommended treatments. They try to enjoy life, and to spare others. They don't wage war, battle, or triumph. They survive and thrive, or survive and endure, or accept death with grace. Most often they are more accepting and at peace with their dying than are those who love them.

A psychiatry professor, suffering himself from a chronic neurological disorder, pointed out first to me the burden that can be "taking responsibility for one's own health"--if there is no acknowledgement that illness and death strike undeservedly even those who take the most responsibility. They can only continue to take responsibility for their health, including their illness and its treatment, without being held accountable for, or being made to feel guilty about, its course and outcome.

From that perspective, the war metaphors, while potentially energizing in the short term, are inadequate  to the ongoing complications and subtleties of a major illness, and perhaps even unfair to the warriors who lose the battle, or who rightfully set down their arms. Resilience is more encompassing of the ups, the downs, the nuances, and the choices patients make.

Health Care Advocacy

Testifying on Capitol Hill for Health Care in October 2009--Photo AP

Part of Elizabeth Edward's resilience was to advocate for better health care and health care access for women and for cancer patients. I use the term advocacy, rather than the commonly used activism, because it resonates for me as more genuinely reflective of Elizabeth Edward's approach to health care reform. She made herself a voice, an advocate, for making health care available to all, through her words in print, in interviews, and in legal testimony.

Advocacy and activism are not mutually exclusive. They may in fact be mutually necessary, or at least complementary, and hopefully complimentary. In my experience of activists turned academic advocates, and of advocates in research and the clinic, advocacy is the less dramatic and public, but the necessary and often private, unglamorous, background work of change.  Elizabeth Edwards wrote books, testified to government, and politicked behind the scenes for health care reform that would bring health insurance to all.

Elizabeth Edwards' willingness and ability to speak for those with her in the treatment room, but who had no voice or platform to articulate publicly their need for health insurance that would remove the burden of financial worry from their cancer challenges, was admirable and effective. She used her book tours, interviews, and fame to give public voice to her private advocacy, and to remind others that she was doing what all cancer patients do, but with the benefit of adequate financial resources.

Her House in Order

I am among those who think that Elizabeth Edwards handled her husband's infidelity--with its attendant deceptions, financial and legal difficulties, humiliations, and particularly his commitment to the daughter he fathered--like a woman scorned, with hellish fury and self-preservation more than with simple grace. Out of respect for Elizabeth Edwards' refusal to name the other woman, and requirement that interviewers in all media leave her unnamed as well, I won't name "the mistress". Most reading here would know about the campaign videographer who became John Edwards lover, and the mother of his youngest daughter. For others, the story is easy to find on line.

Much to the surprise of those who know me, I followed this scandal with great interest, including reading the coverage in People's Magazine, watching his "confession", and watching her Oprah interview. The interest for me was professional. I found it fascinating to assess the train wreck that one woman was able to make of John Edwards' life and that of his family.

John Edwards is, of course, responsible for his own actions, including potential criminal misuse of campaign funds to finance his extra-marital household. However, based on what had been written about the woman long before her involvement with John Edwards, interviews with those who know her, her own behaviours, and her capacity not just to disrupt his marriage, but to create financial and career devastation, the mistress strikes me as very much fitting the profile of a Borderline Personality Disorder--a person whose personality is one of extremes and contradictions in all spheres, and whose interactions with others are rapid, intrusive, intense, divisive, destructive, polarized, and polarizing. It is hard for those who are not familiar with the disorder, or its sufferers to appreciate just how much chaos, anger, infighting, destruction, and negativity someone with a Borderline Personality Disorder can generate so rapidly and seemingly effortlessly within and amongst even high functioning and moral people.

While no saint, Elizabeth Edwards handled this as best as could be expected, and as a function of  what she knew when, and her own needs as someone with terminal cancer and small children. She attempted a reconciliation with her husband that would include his youngest daughter in their life, but was unable or unwilling to continue with this endeavour. I doubt that the other woman genuinely facilitated a shared access agreement with a John Edwards married to and living with his wife, Elizabeth. In any case, after that attempt, Elizabeth Edwards legally separated from John, told her side of the story, and established her own life independently.

However, she remained aware that her young children in particular would need their father no matter what, and particularly after her death. To this end, she did work to preserve their relationship with and esteem for their father. As reported, during the final phase of her life, when doctors recommended cessation of treatment, and palliative care, she was accompanied in her dying by both John Edwards and their oldest daughter Cate "24/7" for the final 2 weeks.

As an adult, Cate is expected to handle her mother's death better than the younger children. That is potentially unfair to a young woman who has a longer lifetime of memories, and a deeper relationship because it included an adult child-parent experience, as Elizabeth Edwards herself observed about her desire to live at least until her youngest turned 18, and could see her as the mother to an adult she would be for him.

Again, from a professional perspective, I think John Edwards' presence was important for their children's comfort, but for Elizabeth's as well. Most prefer to die with their important relationships at peace.

Mary Elizabeth Anania Edwards (1949-2010)
May She Rest in Peace

Your comments, thoughts, impressions, experiences?


Susanne said...

I'd seen the news Monday night that she was gravely ill and had "weeks" to live. But I was shocked yesterday when I came home, Andrew had the TV on and the breaking news on our local channel was that she passed away! I was very sad to hear this especially for the sake of her children.

I had never thought of this until I was reading about her more yesterday, but she had her youngest child when she was fifty!

I enjoyed the post!

Wendy said...

Nice post, Chiara.


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