Thoughts about “Twice Lost”

This morning CBC’s morning radio show The Current aired a documentary called “Twice Lost”. There are a lot of questions that it raises–about relationships, diseases, families, suicide, and reconciliation. You can listen to the whole documentary by clicking here and then selecting Part 2.  It runs about 20 minutes, and is worth listening to in full. But here are the basics and some questions, if you don’t want to (or can’t) listen to the podcast. Warning: spoiler below. One question, up front: what difference should it make to family understanding of a shared past (or a shared future) to discover that a close relative has a previously undisclosed disease, disability, or condition?

Ron and Kerry are brother and sister, estranged from one another in their late teens / early 20s, after some emotional turmoil or “toxicity” (in Kerry’s terms) between them, and currently in their mid-30s. Part of that toxicity involved demands for money, obsessive demands of other kinds, and harassment of family members that went well beyond the usual stuff. Ron went on to threaten suicide a number of times, and came to be viewed as a threat, and not just a nuisance to Kerry’s family; things had gotten to the point that his death would have been welcome for at least Kerry (as she says).

The story from there? It turns out that Ron has Huntington’s disease, whose onset in his late teens coincides with the onset of his contribution to the family turmoil. Kerry’s attitude to him now, with that knowledge has completely changed: from wanting him out of their lives to loving him, feeling guilty about what she now sees as a callous past on her part, and anxiety about his pending death. Now her fear is losing him a second time, this time for good.

Here’s one issue that gnaws at me in this story. It sounds as though if the illness–one that is genetic, that often (as in this case) unfolds slowly, and that inevitably ends in death–significantly changes the perspective of everyone in this story: that of Kerry, that of Ron, and that of us as the audience for the story. When Ron’s life is seen, by Kerry at least, as a result of his personality, the choices he made, and his character traits (Kerry refers to him as “lazy” in recounting her past understanding of Ron), he is shut out of family life. By contrast, when that life is understood in terms of Ron’s having Huntington’s, his life, and his past treatment by others who rejected him, are viewed as tragic and unfortunate. While there are special things about Huntington’s, including the combination of the three characteristics just listed above for it–genetic, slowly but increasingly debilitating, and terminal–the shift in perspective here is likely pretty common. But I wonder whether it’s more common than just the opposite pattern, where the perspective shifts from one that is welcoming, integrative, and loving to one that oozes of rejection and distance, when one finds out just that information.

I’m thinking especially of cases such as those that have arisen in a number of the stories we’ve heard from parents and their experience of diagnoses of disability (see, for example, the stories run in the Modern Pursuit of Human Perfection series, or the blog posts on Ashley X that we’ve done). Here we have disability positive parents (in the case of Ashley X, perhaps just on the surface), and so the attitudes in play I have in mind are not coming from them, but from other family members, from members of the medical teams that are there putatively to support them, and from wider society. At least sometimes, a diagnosis of disease, the revelation of disability, or even susceptibility to a condition, leads to rejection and alienation. I even wonder if some of that has been part of Ron’s own story; the story we hear in “Twice Lost” is very much Kerry’s story about Ron. Any thoughts on this?

A second issue. Ron has also put a personal directive in place for no feeding tube to be inserted, should he need it, as he becomes progressively less self-sufficient.  (Ditto for other forms of life support.)  He’s also just recently been put in a long-term case facility, after an initial prediction that he would be lucky to last through the spring of this year proved to be unduly pessimistic about the life he has left to live. Ron’s now having second thoughts about that personal directive, but is also losing his ability to meaningfully adjust this directive and act in decisive ways.  That likely puts the onus on others to make a decision, should one be needed, on whether to insert a feeding tube. But the presupposition is that when the directive was made, Ron was in full possession of his faculties, and so priority should be given to that directive, even though it was also clearly made when a very bleak prognosis had been offered–he had, after all, attempted suicide several times, and was just recovering his connections with his family. Would his family respect his “true wishes” by following such a directive?  More generally, how does one respect the autonomy of those who make decision, “fully rationally”, in a world that systematically paints a dire view not only of end of life scenarios but of disability more generally

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3 thoughts on “Thoughts about “Twice Lost”

  1. How does one even begin to define “autonomy,” or what counts as “rational” in a society that “systematically paints a dire view not only of end of life scenarios, but of disability more generally”? Whose desires, for instance, is Ron be carrying out when he says he does not want to have a feeding tube–his own “autonomous” desires? or is he reacting to the larger society’s dire view of disability and dependence?

  2. you insignificant asshole my uncle never ever wanted a feeding tube right up until he took his last breath. my uncle was a man who never second guessed his decisions my uncle was a headstrong lovable man who always stuck behind his family and he was never afraid to die he was just scared it was coming so soon. and believe me my uncle knew and always will that we would have carried out any wish he had but just in case you dont know my uncle died on oct. 11/2010 the same day they were playing part 2 of his documentary on cbc and though he was dieing he would have suffered more with a feeding tube he died the same day they called un and didnt have to suffer with a fucking tube shoved down his throat.

  3. i appoligize for my outburst i am not normally like that but if you would like a different point of view from another family member you are more than welcome to ask me but dont say you know what my uncle wanted cause you dont but i can tell you more about his disease and what we dealt with right up until we found out he was sick and till the day he died but also i can give you an insite to my uncle the man i saw once or twice a day till the day he died the man that confided in me no matter what and never confided in anybody else

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