The book is Waking Up Dying – Caregiving When There Is No Tomorrow, a self-published memoir and critique of the medical system by Robert Duke, husband of Shearlean Duke, who died.
It’s a well-written, remarkable compilation of narrative, e-mail updates, lists, sidebars, and medical documents edited and organized by Cami Ostman of Bellingham, WA, a writer who did her own book on trying to marathon on seven continents.
Shearlean (pronounced ‘Shur-lean,’ and southern-born) was chairman of the journalism department at Western Washington University, where I taught for five years. While my employer was Environmental Studies, I worked with Shearlean while advising Planet Magazine, a student environmental quarterly.
She was a vigorous 60-or-so when I met her, a Los Angeles Times vet who had overcome a tough early life to not only be successful and competent, but generous and supportive. Nice! Not every administrator can claim that.
Bob was a technical writer. The two approached her illness with journalistic intensity, questioning, fighting, hoping, and coping.
Out of that came a remarkably honest account of the inevitable unhappy ending, the yucky responsibilities of a primary caregiver, and the ups and downs of the modern medical system.
Shearlean had a malignant stage IV glioblastoma brain tumor, one of the deadliest cancers known. For better and worse, Bob Duke (now 72) was a determined badger in the doctor’s office while advocating for his wife.
In one memorable exchange, an exasperated administrator reminds him that there are other patients they are worrying about. And he replies he has only one. That pretty much sums up the emotion that boils with terminal illness.
“Waking Up Dying” is not a beach read, but readers who have confronted serious illness – or are old enough to expect such experience soon – will find Duke’s candid sharing quite informative, if not necessarily comforting.
The diagnosis was terminal from Day One, but the fight went on for 17 months. Shearlean died at age 64.
Detection of the tumor had occurred in Kenya, where Shearlean was organizing an overseas college program. The first jolt of pain was so excruciating that she thought a snake had bitten her. It was only when the couple got home that the jolting pains were diagnosed as a tumor.
What followed was surgery, radiation, chemotherapy, a limited return to work, a last-gasp visit to California to be with family, and death.
The author came away frustrated by vague answers, delays in medication, and the medical bureaucracy. His appendices are titled, “Rants.”
Medical professionals might reply that Shearlean got expensive and extensive care for a tumor that all knew was 100 percent fatal from the beginning.
For readers in the middle, the book is valuable as a caregiver account of the confusion all of us face when negotiating the hospital world. The book is a memorial to the memory of a brave journalist, and a contribution to a problem that never seems to have an entirely satisfactory answer: what is the most humane approach to end-of-life treatment?
A lovely tribute to both Shearlean and the book, Bill. One of the reasons I so valued working on this with Bob is that this book is also a love story. Bob’s love for Shearlean and his commitment to her care endeared him to me and made me send out a prayer to the universe that we should all be so lucky to have someone advocating for us the way Bob did for Shearlean.
Tim Howles, Associate Research Fellow here at the William Temple Foundation, considers post-Brexit political community through the notions of islands, borders and spaces.
I’ve recently been reading this wonderful essay on how human societies throughout history have thought about the concept of “islands”. The theme seems pertinent for our situation. After all, one of the archetypal figures for “England” and “Englishness” is that of “the island”, a kind of self-enclosed space, unique and sufficient unto itself. The figure occurs in poetry, in music and in the visual arts. And recently it has been recurring in the political discourse surrounding Brexit.
For some, of course, the idea of “island existence” is an inspiring and aspirational one. Perhaps we might echo W. H. Auden’s celebration of a country formed in the image of “the English cell”:
For others, the idea smacks of a “little Englishness” that is naïve, regressive and dangerously close to expressions of nationalism (whether more or less benign).
But either way, our understanding of “island existence” warrants examination, for it draws attention to the important question of borders. What should be the porosity of the borders that join this “island” to Europe and, by extension, to the rest of the world? Of course, Brexit is causing this question to be re-opened. Not least in relation to the backstop arrangement for the island of Ireland. And while intergovernmental negotiations continue, it behoves us to think about the implications of this question at the level of ideas too. After all, as the EU Chief Negotiator Michel Barnier said in a speech in Dundalk earlier this year, the Irish border is one that “has been removed not only on maps, but also in minds” and, whatever the outcome of Brexit, “it should not and must not lead to the return of a hard border, neither on maps nor in minds”.
To think about this, we might turn to an unlikely source. For the question of borders was examined at a theoretical level by the twentieth century German political theorist, Carl Schmitt. Schmitt was cautious about the progresseive elimination of borders he perceived as occurring in the post-war, globalized, international order. Why? Because, for him, it presaged the arrival of universal values that would be imposed upon societies “from above”, diluting the geographically and historically-rooted matrix of human social existence that had pertained before. Thus, for him, at the heart of a borderless Europe was the idea of a “monistic metaphysics” (Political Theology, 1922, p.19) that would end up impoverishing the realm of concrete human life itself, with its potential for organic creativity, inventiveness and self-expression.
To counter this vision of a generalized global society, Schmitt re-introduced the idea of the border. For him, politics was the act of defining oneself as a collective against some other collective, such that the “we” determines its identity in large part by staking out a border against the “not us”.
Schmitt’s thought at this point skates perilously close to the reactionary. Indeed, some have cited his work as providing the ideological blueprint for populist authoritarians such as Trump, Duterte and Orban. And so it is true that, in the words of Bruno Latour, the recommended “dosage” of his thought to be consumed should be watched “as carefully as we would do with a powerful poison” (An Inquiry into Modes of Existence, 2013, p.113).
But perhaps there is something that can be pilfered. For Schmitt’s core idea is a spatial one. In order to fully represent ourselves, he claims, we need to occupy a space. And this can only be done by staking a claim, that is, by representing oneself as something and not as something else. It was precisely this act of representation that Schmitt thought was under threat in the era of globalization, whose only demand upon us was to submit to generalized norms that have already been decided for us. His interest in borders was therefore intended to energize us to become more (not less) representative societies, understanding truly which values matter to us in the particular time and space we inhabit, and then being open to composition and growth “from the bottom up”, rather than “from the top down”.
Translated into our current situation, this would be a vision of “island existence” that would be open to new forms of inclusionary representation in the future. Whether this is the vision that will actually be delivered by Brexit… I will leave up to you to decide. But, since this is our journey, I think it is incumbent upon us all to think now about the “political” processes (in Schmitt’s terms) that will determine the borders we establish and, by extension, the terms on which we seek to engage with Europe and the world.
What is the role of religion in supporting this vision? It seems to me that religion can model and enact the very movement described above. After all, what is religion if it is not the staking of a claim, the gathering of a people around a shared value that they hold dear and that defines them as a collective. And then, at its best, religious communities are those which open out these borders, inviting an engagement with the outside world on terms that have clearly been defined. For Schmitt, this would be the foundation for genuine “political” debate itself. He approved religion as an ingredient in safeguarding this future. Perhaps here, then, is a constructive role for religion in the public space at the time of Brexit.
We here at the William Temple Foundation would love to hear from you: do join us on social media to explore your stories about the role of religion in forging a representative political future for this little “island” whose borders we now must conceive afresh!