As I read this book review that mainly feature's the author Lous Heshbusiu's journey, I feel as though I am all too familiar, with all that she reports chronic illness to be. Perhaps it is because of the raw state of pain at which I sit in bed with today, or because her account of chronic pain is so true for so many. David Biro wrote the review based on her 2009 book, Inside Chronic Pain: An Intimate and Critical Account. When your dealing with a disorder that no one can see, or fully understand, it is so comforting to read a positive account from another who has gone through a similar experience. It's as rare as finding gold, to come across not only someone who's felt as you do but, someone who has written about it.
I think sometimes it's easiest, to pretend nothings wrong because the bitter truth of how you actually feel is sometime to hard for words to tell. Like right now, it's easier to type feelings to a blank page, than to go out tonight and actually say how I really feel. Some times it's just as simple as not wanting to hear the truth, myself, apart from telling another person. I find theres a large difference from being able to sit in bed, and go through the pain rather than speaking about it. Yet, not speaking about it and not having anything else new to say create a void between the person in pain and everyone else. That's a void I must admit I have trouble with, sometimes it feels painstaking trying to connect with another person, especially when I already feel alienated by the pain.
Despite its morbid subject matter, there are ways to turn illness narratives into compelling reads. One can ratchet up the drama and suspense (e.g. Frigyes Karinthy’s A Journey Round My Skull and Jill Bolte Taylor’s My Stroke of Insight). One can fill the narrative with deep insights (Oliver Sacks’s, A Leg to Stand On and Arthur Frank’s At the Will of the Body). Or one can aim for the lyrical brilliance of poetry (Anatole Broyard, Intoxicated by My Illness and Sarah Manguso, Two Kinds of Decay). In her new book, Inside Chronic Pain: An Intimate and Critical Account, however, Lous Heshusius chooses none of these strategies. Unlike Tennessee William’s Blanche Dubois, she will have neither romance nor magic; she wants to tell it like it is.
A courageous tack, clearly, since the reality is downright uncompelling and ugly. In a moment of inattention, the Dutch-born education professor now living in Canada was blindsided by another car as she pulled away from a stop sign. In that moment she exits a rewarding life, professionally and personally, and enters what she imagines to be ‘Hell’: constant, often paralyzing pain; endless visits to doctors and other health care providers (over 60 in all) who offer few answers and at times make the pain worse; and increasing loneliness as her world retracts inward and she becomes progressively isolated from friends and family.
This new life has lasted 11 years so far, she tells us in her memoir, and is still going. The living-hell of chronic pain is not something anyone would willingly choose to enter, even perhaps vicariously as a reader. It corresponds to what Arthur Frank (1995) termed a chaos narrative of illness. As opposed to the more comforting restitution narratives, such tales offer no happy endings or redemption, only darkness and stasis, a life resistant to meaning that will never get better. No wonder that others prefer to keep their distance. At a dinner party while Heshusius experiences a flaring of pain and could barely hold herself upright, everyone pretends nothing is wrong, even Heshusius herself: ‘We all took part in excluding me.’ The reality is just too painful to acknowledge.
I think sometimes it's easiest, to pretend nothings wrong because the bitter truth of how you actually feel is sometime to hard for words to tell. Like right now, it's easier to type feelings to a blank page, than to go out tonight and actually say how I really feel. Some times it's just as simple as not wanting to hear the truth, myself, apart from telling another person. I find theres a large difference from being able to sit in bed, and go through the pain rather than speaking about it. Yet, not speaking about it and not having anything else new to say create a void between the person in pain and everyone else. That's a void I must admit I have trouble with, sometimes it feels painstaking trying to connect with another person, especially when I already feel alienated by the pain.
And yet this is precisely why Heshusius’s book is so important. I used to think it was just doctors who turned their backs on patients they could no longer ‘help’. But the problem is much bigger, involving society as a whole, particularly in the West. As Susan Sontag (1978) noted a generation ago, the healthy will do everything they can to keep ‘the night side’ of life at bay. We are so obsessed with youth, health, and progress that we have no time for (or interest in) age, illness, and death. Yet for those who can’t escape the night side’s hellish precincts, the prevailing mindset is toxic. Pain by its very nature is a subjective, private affair. It’s difficult to think about, let alone communicate to others because its content is imperceptible and elusive. As such, it emphasizes the separateness between people (Biro, 2010). The problem becomes even worse, however, for patients like Heshusius in which there is no visible wound or lesion on a CAT scan. Now the issue is not merely one of unsharability (which is bad enough) but also unbelievabilty. How can someone possibly be in such severe pain when there is no tissue damage, no reason for it? The result is an echoing chamber of pain. Doctors, all but a few pain specialists, don’t have adequate training and experience, as Dr Scott Fishman notes in his excellent clinical commentary at the end of the book. When their materialist paradigm is turned on its head (pain without a physical source or without a fixable source), doctors are stymied and tend to prescribe medication indiscriminately or refer patients somewhere else, prolonging the endless cycle of suffering. Colleagues, friends, and family members, they too are often ill-equipped and skeptical. And even when they try to understand, their imaginative powers typically come up short – ‘What do you do all day?’ is a question that Heshusius is asked over and over again. Inevitably, the need to turn away is felt by the sufferer herself. Looking at an old photo one day, Heshusius is filled with grief: ‘I like this woman. I want to be her. How did she slip through my feelings?’ (p. 26) For many chronic pain patients like Heshusius, the alienation from others and from oneself, coupled with the belief that the pain will last forever, leads to a desire to end life – ‘How often have I wished I could lie down and simply die.’ (p. 3) Heshusius cites a recent article in the medical literature showing that among chronic illnesses, chronic pain is the second major cause of suicide after bipolar disorder, and ahead of depression and psychotic disorders.
"What do you do all day?" is too common a question, that the sufferer feels obligated to fulfil with productive events. Yet, I doubt an expectable answer is "I dealt with pain all day!" but it is the honest one, for most. The kind of pain that you often compare to wounds from weapon, stabbing pains, electric live wire shooting pains, throbbing pains, burning pains...etc. That is what I deal with all day, sure I try to be productive too, read a book, knit, do chores, exercise. But if I have done nothing but lay in bed, please excuse the lack of productivity. As it is because, it was all I could do to keep myself from going into the ER and begging to be admitted.
As I read those last few lines of the review it resonates within me. Recently, the leader of my old small group from my youth days, posted pictures on facebook from when our group was younger -- I find myself looking at old pictures and it's like I travel back to those feelings of although less energy still energy that I had. I see that girl in the photo and she looks like a different person, that only resembles me. I like her! I want to be her again! With friends and energy, always having invitations to go out and have fun. I miss that girl, because slowly somehow I lost her, as I lost invites, as I lost touch with friends, as I faded in to the background. The grief of losing who I was, or wanted to be, does not feel past. But, as losing someone you were close too, their memory is always there. It's hard to be okay, with something that is not okay. The feelings are as hard as the pain, and it's maddening.
As I read those last few lines of the review it resonates within me. Recently, the leader of my old small group from my youth days, posted pictures on facebook from when our group was younger -- I find myself looking at old pictures and it's like I travel back to those feelings of although less energy still energy that I had. I see that girl in the photo and she looks like a different person, that only resembles me. I like her! I want to be her again! With friends and energy, always having invitations to go out and have fun. I miss that girl, because slowly somehow I lost her, as I lost invites, as I lost touch with friends, as I faded in to the background. The grief of losing who I was, or wanted to be, does not feel past. But, as losing someone you were close too, their memory is always there. It's hard to be okay, with something that is not okay. The feelings are as hard as the pain, and it's maddening.
Thankfully Heshusius doesn’t take this route and manages to find some measure of relief from pain which she desires to share with others. She urges her fellow sufferers to take an active role in their well-being – by not accepting what a doctor tells you, by willing you to keep changing doctors until you find the right one, and by doing your own research even when it leads down unconventional routes. This approach led Heshusius to prolotherapy, which though far from a cure, and certainly not a universal one, has helped her considerably. In addition, chronic pain patients often can no longer count on the old ways of finding pleasure and hope; since the past is gone and the future bleak, they must focus more on the present:‘here’ is the only place where I can really be. ‘This is it.’ Only this. Now. This pain above my left eye. This thought. This fear. The beauty of the music. The softness of this fur purring against me. The steel in my neck. This lying awake. (p. 39) Finally, in a world that makes no sense, patients must learn to create some sense and purpose for themselves. Heshusius does this by writing down her thoughts and later formalizing them in a story – a story that will hopefully contribute to the eventual lessening of pain as it reaches out to other sufferers (you are not alone) and informs the healthy (this is what we do all day and your ignorance and neglect makes our existence all the more intolerable). The Mayday Fund recently reported that there are now 70 million chronic pain patients living in the United States. Yet despite the alarming number, these sufferers and their disease are almost as invisible as their pain: in the genre of illness narratives, in medical school curricula, and in research funding. Let’s hope Heshusius’s courageous and empowering voice helps change that.
Sometimes it may seem silly that we do our own research into our symptoms as it is a doctors job, but I agree that it is important. In our technology era, often doctors are undereducated on new medical advances as they are already pressured for time and over booked. Looking into our own symptoms helps us find new resources and possible conclusions. The past is gone and the future does look bleak, so this last point is important, to live day by day. Our day's are all different, as pain does not schedule when it's going to join you. Thus, it's the joy in the little things that we must relish as others who are healthy do not take time for them, when they can be what makes my day. When the sun is shining it is a moment to enjoy, and take note of, when this purring warm lump in my lap sits with me it's also a bright comforting moment to smile about.
~ElysiaB
Lous Heshusius, Inside Chronic Pain: An Intimate and Critical Account, Cornell University Press, 2009; 167 pp.: 978080149
Reviewed by: David Biro, State University of New York, USA
Health XX(X) 1–3 © The Author(s) 2010 Reprints and permission: sagepub. co.uk/journalsPermissions.nav DOI: 10.1177/1363459310364709 http://hea.sagepub.com
References
Biro DE (2010) The Language of Pain. New York: WW Norton. Broyard (1992) Intoxicated by My Illness. New York: Fawcett Columbine. Frank AW (1995) The Wounded Storyteller. Chicago, IL: University of Chicago Press. Frank AW (2002) At the Will of the Body. New York: Mariner Books. Karinthy F (1992) A Journey Around My Skull. Budapest, Hungary: Corvina Books. Manguso S (2008) Two Kinds of Decay. New York: Farrar, Strauss & Giroux. Mayday Fund Report (2009) A Call to Revolutionize Chronic Pain Care in America: An Opportunity
in Health Care Reform. www.painreport.org. Sacks O (1998) A Leg to Stand On. New York: Touchstone. Sontag S (1978) Illness as Metaphor. New York: Farrar, Strauss & Giroux. Taylor JB (2006) My Stroke of Insight. New York: Plume.
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