Honoring Chaos

While communication scholars have increasingly responded to the criticisms of the ideology of openness first highlighted by Parks (Caughlin, Mikucki-Enyart, Middleton, Stone, & Brown, 2011), it is clearly not something that has yet permeated academic orientations to research (see Planalp & Trost, 2008). Even as some researchers now recognize that there are benefits and drawbacks to communication avoidance in response to critiques about a previous research bias toward full disclosure (Caughlin, et al, 2011), others continue to harbor a bias toward full disclosure (Planalp & Trost, 2008).

For example, in their study that employed hospice volunteers as participant-observer informants for communicative processes in the hospice setting, Planalp & Trost (2008) seem to equate avoidance of talk with denial, demonstrating a clear bias toward open discussion and a rejection of the viability of silence and/or avoidance of the topic of death. They go so far as to encourage the development of training materials for the hospice volunteers so they are positioned to better facilitate open communication between patients and loved ones about death and dying. Clearly, this is premised on the presumption that topic avoidance equals a failure to accept the gravity of the situation, something that is quite difficult to justify, given our dark side lens--openness is not inherently better than closedness. It's all contextual, and the perceived intent by a third party (in this case, the hospice worker) of the the choice to be open or closed about a topic with specific individuals certainly does not reflect what is being negotiated between the patient and his or her loved ones.The imposition of an ideal standard of openness by this third party and the subsequent reduction of the chosen communicative strategy to remain closed by one or both co-constructors of the illness experience is  reprehensible. It's not only simplistic, but paternalistic, and it positions the health care provider as the expert in how the illness experience should be co-constructed by patients and their families (which, by the way, serves to further subordinate the patient perspective and reify the dominance of the medical provider perspective in the biomedical context--only this is even worse than the traditional biomedical model in which scientific manifestations of disease dominate over psychosocial circumstances because now the biomedical perspective has been re-appropriated to dictate the way patients experience illness). So, this study is a great example of how current trends in social scientific research regarding the value of both embracing and avoiding specific topics (Caughlin, et al, 2011) is failing to translate effectively to the lay discourse in hospice care, with serious implications for valuing the patient experience of illness.

The bias toward the ideology of intimacy can be further demonstrated in the Planalp & Trost (2008) article in their apparent assumption that negative emotions are inherently disruptive, bad and in need of management (as is made apparent in their recommendations for training/preparing hospice volunteers on page 229). One of our primary goals as communication researchers dealing with and researching difficult topics should be to create space for the expression of emotions that are marginalized in the ideology of intimacy (Parks, 1995). This has become increasingly clear in the readings throughout the semester, perhaps no more so than in Toller's (2011) finding that well intended attempts at nurturing through the provision of information and/or advice in the face of parental grief over the loss of a child is perceived as hurtful rather than its intent to be helpful. Grief needs space. Those who grieve need, more than anything, room to grieve with someone. Yet, our instinct is to close that space in favor of restoration to "normal"--and that hurts.

Pain, grief, and difficulty are often characterized as felt chaos by those experiencing it. You feel out of control. You feel at a complete loss, there's no script to follow and you are often isolated from previously supportive friends and loved ones who simply don't know how to talk to you anymore. One tension that exists here can be characterized by this experience of chaos induced by the absence of a script for negative emotions and the need our loved ones feel to impose or attempt to restore order to our lives (see Toller, 2011). The resentment and/or hurt that is felt by these attempts is perhaps explained, at least in part, by a failure to honor chaos inherent in the story of the loss. This idea is more fully explored by Arthur Frank in his The Wounded StoryTeller (1995) when he talks about honoring stories of illness.It's important to honor the experience of those grieving and to create space for it. This is demonstrated, at least partially, by the value of sharing memories about the deceased child and by being silent and simply being present and listening to the grieving parent talk about their child and about their grief (Toller, 2011). The grief inherent in the loss story needs to be honored. Sadly, the importance of honoring these stories is often lost on those who have not experienced them. Those on the outside of this story--those observers who are not experiencing it-- perceive this grief and chaos as something they should help the person reign in and control. These attempts to impose order are the very strategies that Toller (2011) reports as being hurtful. What we really need is to legitimate the experience of chaos as normal rather than marginalizing it as abnormal. In his discussion about illness narratives, Frank (1995) would say that it is the ethical responsibility of those who experience loss to share their stories and help legitimate the experience of these marginalized emotions.

I agree with the need to honor and create space for marginalized feelings as articulated by Frank (1995) and as seems to be supported by Toller's (2011) study. In fact, this is one major part of my draw to the communication of health--I see a real need to legitimate the experience of illness in the dominant narrative that favors health as desirable and illness as somehow deficient. As a result, I am quite open about my illness stories. When I was first diagnosed with post-partum depression after the birth of my third child, I was not able to easily relate to or understand it. I had no idea that it was a common experience in pregnancy, having only heard that the Baby Blues were common. Post-partum depression happened to those people who were weak and the Baby Blues were the strong woman's version of PPD. This is how I understood it in my own head. I didn't judge those with PPD, mind you--it was okay for the other person to get this--just not me. It was a direct identity threat to my vision of myself as strong and self-sufficient. Without getting too deep into this story, I will simply say that once I finally recognized the problem after my third child was born (it had begun in my first pregnancy and worsened over the six years I was having children), I began talking openly about the condition and my experience with it. I began honoring it. I did perceive this as my ethical responsibility, particularly when talking with newly pregnant friends. I have to ask myself, though, in light of these readings--is this a bias toward openness? It's a tough question, but I have to say that I don't think so--I think it's a recognition of one benefit of openness about illness. Along with this openness I have a response-ability (yes, there's Stewart again!) to recognize the way my openness is influencing the reality that I am co-constructing with another person. I need to respond to what I am observing and recognize when this openness is helpful and when it is hurtful. Because if nothing else, the dark side lens certainly highlights the impossibility of universally assigning valence to any communication strategy.

In further considering my perspective as a citizen--this time from the perspective of a citizen/scholar, these articles, and Toller's (2011) study in particular, got me thinking about the different stakeholders in the medical encounter and how they are positioned to collaboratively construct the illness (or death) experience. The hurtful function of attempts at imposing order on the chaos of grief and pain may ring true in the support network, but, I'm curious, how does this change when it is applied to context of chronic or terminal illness?  First, what is "order" in each of these contexts? How is it defined? Is it different for the medical provider than the patient? What about for the patient and the loved one? How is "order" communicatively negotiated? What role does hope play in this negotiation?

Another set of thoughts--What does this finding signify, if anything, for medical providers and their shifting role in relation to those who are terminally ill and beyond recovery? How would role expectations of physician as expert, as someone who fixes the body shift in the context of the chaos of chronic or terminal illness? Are their attempts at restoring order welcomed? Rejected? What impact do they have on the shifting illness identity? And, of course, what role does the communication of hope play in managing this tension between order and chaos?