痛，无人愿意的礼物
周磊, MSc OT, M.A, B.A[1]
Dear readers, the English version of this article will be presented just below the original version in Mandarin.
五年前，我读了保罗·布莱德医生与杨菲力的这本书。布莱德关于痛及痛症治疗的洞见和他作为宣教医生治疗麻疯病的传奇经历深深影响了我之后的日常治疗工作。对我而言，曾经与贬义划上等号的“痛”开始变得更加中性。痛，既保护了我们，也在一定程度上界定了我们作为个体的存在。从这个意义上来说，痛，是一份礼物，但无人想要。只是，那些扰人的持续疼痛也是礼物？
今天，我坐在体感康复治疗（Somatosensory Rehabilitation）的培训课室里。我们讨论的是神经性痛症，更确切地说，麻木症和触摸痛及复杂性局部疼痛综合症。它们是否也是礼物呢？我们应该接受它们吗？被一些无法解释的痛症所困扰，我来这里寻找答案。
头两天，EVA老师帮助我们夯实了体感康复治疗的基础。第三天早晨，来到教室，我希望克劳德·史，体感康复治疗方法的创始人，能够帮助我找到应对那些棘手病例的办法。出乎我的意料，课程一开始，他却向我们提出了一系列问题：我们会如何定义自己？我们的病人又会如何定义他们自己？
我是谁？在中国，我曾经是一名新闻从业者；在加拿大，我成了一名职业治疗师。十五年前，在经历着巨大变革的中国，我能做的只是用自己的心和笔去记录下我所遇见的人。生活中的痛，身体上的痛，对于我的同胞并不陌生，但“痛”却并不是一个社会大众普遍谈论的话题，更不用说随身带着止痛药。好象对于我们，“痛”是生活中的必然，就象“忍受痛“也是一种必然。我们接受“痛”，却从来没有把它当礼物。
来到这样一个文化迥异的加拿大社会，我在每天的工作中面对着来自世界各地的患者，谈论最多的就是这个“痛”字。尽管如此，当我的加拿大同事因为头痛来询问我是否随身带着止痛片时，我仍旧吃了一惊。不同文化背景下，人们对待“痛”的应对是如此的不同。对于她来说，痛是需要立即吃药止住的；而对于我来说，痛则需要承 痛则需要承受，或许我会休息一下，等着痛渐渐消失。她的办法是一种主动的回避，而我的则是被动的回避。我们的共同点：痛是需要回避的。诚然，我们没有把痛当成一种礼物。
痛是记忆，是经历，也是文化。不同语言里对于痛的用词也大体能体现出不同社会群体对痛的态度和体会。虽然我的母语是中文，但在面对《麦吉尔痛症测试表》时，我仍然无法把那些描述“痛”的词汇一一翻译成中文。因为，不同的文化背景带来对“痛”不一样的理解。这样的差异引发出各种“无法细说”的无奈、焦虑、以及“鸡同鸭讲”的尴尬，这恐怕是每位治疗师工作中的常态。于是，更多的时候，我们用1到10的数字表来量化和沟通“痛”的感觉。我们都同意每个人对痛的评估和承受能力不一样，但在现实中，我们却回避了这种多样性而尽量简单地把它量化。结果呢？有时候，这种方法能帮助与患者有效地沟通；有时候，患者却会争辩，“我没有痛，我只是觉得有火烧。”“我的痛只有30%的水平，但麻木却是100%。”这样的时刻，我困惑，“我们在谈论同一件事吗？”“我该如何去测试这个看似无迹可寻的痛呢？”我开始在论文文献当中寻找答案。最终，我来到了体感康复治疗（SR）的课堂。
三十位来自加拿大和欧洲的治疗师们和我同在一个课堂，脸上都写满了困惑、怀疑和期待。在这次课程之前，已经有千余位世界各地的治疗师受过培训；这之后，还会有更多的人加入。我们有着不同的文化背景和个人经历，是“神经性疼痛”这一共同的课题把我们联结在一起。前两天课程的老师Eva与我们大多数学生有一样的背景：加拿大魁北克的职业治疗师。她面对的挑战是我们曾经或仍在经历的；她的经历和经验则给我们带来启发和激励。她的讲课是典型的北美方式：条理清晰地帮助我们一步步建构基础，带领我们进入SR治疗领域。很多时候，她更象一个教练，通过提问和反问来帮助我们找到解决方案。两天的课程结束，我们都自信心爆棚，恨不得马上回到诊所开始治疗。只是，现实往往不按教科书出牌。第三天，当克劳德走进课室时，我们的自信心被大大打击：那些似乎开始清晰的画面又渐渐模糊了。克劳德在实践和研究两个领域浸淫多年，他更象是个教授型治疗师：不仅知其然，还知其所以然。他谦逊的态度正是孔子 “知之为知之，不知为不知，是知也”的最好写照。克劳德片言只语的点评总是会引发一场头脑风暴，并借此帮助我们找出最优方案。整个思考过程不仅仅涉及患者的症状，也考虑到患者作为一个独特个体的家庭、文化乃至宗教的背景。他和Eva一直强调要尊重患者对于自己痛症的描述。他们的强调甚至于到了这样一个程度:鼓励治疗师如果有可能，应该学会患者的母语词汇来复述他（她）对于“痛”的描述。这正体现了SR治疗方法里很重要的一环：与患者达成共识，让他们知道什么时候叫“停”，以免痛症加剧。
那么SR治疗方法究竟是什么呢？正如克劳德在《Handbook of Somatosensory Rehabilitation》这本书里所说，它所针对的是与皮肤触觉相关的病症。最开始，治疗师要帮助患者了解什么时候需要叫“停”对触觉神经的刺激，并帮助他们将此运用在测试和治疗过程中。简而言之，这个治疗的理论基础从一句课堂上重复了无数次的话开始:“寻找皮肤触觉麻木，降低触觉麻木，并以此来减轻神经性疼痛。”老师们向我们介绍了这个治疗方法背后的科学依据：神经可塑性。加上世界各地SR治疗师们的研究数据，这一治疗方法因其可见的效果而越来越被接受。具体而言，SR治疗手法包括运用早已被证实可靠的触觉测试工具单丝（monofilaments）和 两点测试器（two point discriminator）来测定痛的范围和程度，并用麻木症状图、触觉痛症图和触觉彩虹图等图示方式来直观表现测试的结果。这使得那些看起来无迹可寻的痛症变得具象可测。然后，治疗师根据不同的测试结果来设定不同的治疗方案。
把理论运用到实践当中，并给患者带来真实可见的效果，这正是SR治疗方法所要做的。但是，从理论到实践要走的路还很长。“如何与治疗队伍里其他的成员，包括医生、其它相关治疗师及患者沟通？”“如何保证患者会在这样一个相对较长的治疗时间里坚持下来？”“如何说服保险方支持患者的治疗方案并支付相关费用？”这些都是治疗师需要面对的挑战。Eva以自己的经验告诉我们，缺乏沟通，运用SR治疗的效果会大打折扣。班上同学的一句话引起了我们的共鸣：我们都需要成为变革的媒介。这样的学习，我们学到的不仅是一种治疗方法，更重要的是，它刷新了我们看待“痛症”的观念。
不同文化和个体之间对于“痛”理解的差异仍然存在。但是，开放的心态加上对这种差异的敏感，帮助我们更好的沟通和测评“痛”。在一个理想的状态里，治疗师可以自由轻松地了解他（她）的患者；现实中，时间的限制无处不在。在现实与理想中如何找寻平衡？一颗愿意聆听的心加上谦逊的尊重的态度会为治疗师打开一扇门，从而进入到患者的世界里。
我来到这个课堂为我的患者寻找答案。对其中的一些人，SR治疗方法可能帮助我找到了解决方案；对另一些，他们的痛可能还是未解之谜。所有的痛都是无人愿意的礼物？我的答案：省察我们内心和认知上可能的麻木，当我们更加了解痛时，我们可能更能够接受它作为一个礼物，不管乐意不乐意，痛让我们意识到自己的存在。
Pain: a gift that nobody wants
ZHOU Lei, MSc OT, M.A, B.A
Five years ago, I read this book written by Dr Paul Brand and Philip Yancey. Dr Brand’s insight on pain and pain management and his amazing experience as a pioneer leprosy surgeon inspired me greatly in my practice. Pain, that used to be a totally negative concept in my mind, became a more neutral word. Pain defines and protects our existence. In this sense, it really is a gift, but unfortunately, nobody wants it.
Today, I am currently attending a Somatosensory Rehabilitation Method (SRM) class that discusses neuropathic pain, namely, hypoaesthesia, allodynia, and the notorious Complex Regional Pain Syndrome (CRPS). Are they still gifts for us? Should we accept them? Troubled by the mysterious cases of some patients, I am here trying to find the answer.
In the first two days, the instructor, Eva Létourneau, guided us to build the bases of SRM. On the third morning, I entered the class, hoping that the founder of this approach, Claude J Spicher, would guide me until I found the answers of those tough cases. Surprisingly, he started the class by challenging us to think about how we would identify ourselves, and our patients as well.
How should I identify myself? I was a journalist in China, and now I am an Occupational Therapist (OT) in Quebec, Canada. Fifteen years ago, facing the changing era, all I could do was recording the stories of my interviewees. For my people, pain is not a strange thing, be it physical or psychosocial. Our approach for pain management is to endure and accept it, certainly, not as a gift. However, pain and pain management have never been common topics in our daily lives. A painkiller is rarely something that you can find in an office drawer or in a purse.
Moving to Canada, I became an OT in a totally different culture. Although pain is the word I speak and hear most often in my daily work, I still am amazed at the different ways people deal with pain, such as when my Canadian colleague approached me to ask if I have painkillers. For her, pain is something she needs to get rid of immediately by medication; for me, pain is something I should bear or expect it to go away. Her approach is active passive; mine, passive passive. One common point: we are all passive. We do NOT see pain as a desirable gift.
Pain is an experience, also a culture, in another sense. We use different terminology to define pain. For certain cultures, there may not be as many specific words to describe pain as the English terms in the McGill pain questionnaire. To be honest, as a native Chinese Mandarin speaker who graduated from the program of Chinese literature and journalism, I find it difficult to translate these terms into Chinese. This cultural difference, combined with personal experience, made the evaluation of pain almost an impossible mission. Quite often, in the clinic setting, the frustration of not well understanding patients’pain leads therapists to a quantitative approach: it is enough to use a scale of one to ten to define the patients’pain. We can all agree that your one is not the same as mine, but in reality, we tend to ignore the difference in order to simplify the situation. The results: sometimes it worked; sometimes, patients argued with us: “But I have no pain, I have numbness”; “The pain is at 3 out of 10, but burning is 10 out of 10”. At that moment, as a therapist, I was intrigued: “Are we talking about the same thing?”, “How should I evaluate and treat the seemingly indiscernible, untraceable and indescribable pain?” With all these questions, I continued to search the answers in the literature. Eventually, this search brought me into the SRM class (Fig. 1).
Figure 1: the thirty participants from nine countries. In the Centre, Eva Létourneau, instructor.
Thirty therapists from Canada and Europe, some excited, some puzzled or even doubting, sat in the class with me. There are also over one thousand other therapists from all over the world being trained for this same approach along with many more to come. Certainly, we brought the baggage of different cultures and personal experiences; but the same topic connected us: neuropathic pain. Eva came from the same context as most of us: an OT in Quebec Canada. Her challenges, we all had and still have; her experience, offers us inspiration and encouragement. Her teaching style is a typical American way, very structural. Brick by brick, she built the foundation, and led us into the SRM area. Her teaching style is more like a coach: she questioned, inquired, re-questioned, and exhorted us to find the solution. After two days of class, our confidence was boosted up. We couldn’t wait to try the new approach with our patients. But, hold on, the reality is not that simple. When Claude joined the class on the third day, he hammered our trust badly. It seems that all these just clarified pictures became a bit confusing again. His background in both practice and research made him a professor practitioner: not only did he know how to do, but also the reason to do it. His humble attitude reminds me of what Confucian said: “If you know, recognize that you know; if you don’t know, realize that you don’t know. This is knowledge”. The remarks he made often prompted us to brainstorm in order to find an optimal solution. This process of reflection involves not only specific symptoms of the patient and their evolution but also the person as a distinctive being with special inheritance of culture, family, and religion. The way in which Claude and Eva insisted on how important it is to respect the patients’ expression in relation to the symptoms, to the extent that the therapist should be able to say the word the patient uses to describe the pain in his/her mother language, emphasizes the critical part of the evaluation of pain for SRM approach. This is to have consensus at the stopping level to avoid triggering the pain.
So what is the approach? As Claude mentioned in the Handbook for Somatosensory Rehabilitation, it deals with disorders of the cutaneous sense. The first thing to start the approach is always to reach an agreement with the patient in order to enable him to know when to stop, either during the evaluation, or in the treatment program. The theoretical basis, to put it in a simple way, begins with the SRM motto: “Look for tactile hypoesthesia, because by decreasing hypoesthesia, neuropathic pain decreases”. Claude and Eva presented many existing research literatures to establish their biological basis, adaptive neuroplasticity. In addition to many promising data gathered from their and other Somatosensory Therapists of Pain’ practice all over the world, its effectiveness becomes widely known. The method requires reliable testing tools, for example, the monofilaments and the two-point discriminator, to quantify the pain and precise maps including the aesthesiography, allodynography and rainbow pain scale chart to define the neuropathic pain territory and severity. In this way, the seemingly untraceable pain becomes measurable and visualizable for both therapists and patients. Based on the results of the evaluation, the therapist and the patient agree on a treatment program. Again, the underlying theory: adaptive neuroplasticity.
Thegoalofthesomatosensoryrehabilitationapproach is to translate the theory of adaptive neuroplasticity into practice and to yield solid evidence of treatmentefficacy. However, thereisalwaysalongwaytogo fromconcepttopractice.“Howtocommunicateand reach an agreement among team members, including doctors, other therapists, and patients?”, “How to motivate patients to adhere to treatment, as it is relatively a long treatment process?”, “How to convince the insurer to support the patient’s treatment?” They are all predictable obstacles faced to the therapists. Eva admits that this approach cannot be effective if the therapist only works within her own corner. One of the remarks made during the course: be an agent of change echoed in the whole class. With this new approach, what we learn is not only a treatment method; more importantly, it can shape our thoughts about pain.
The discrepancy of the understanding of pain among different cultures, within various individuals, persists. However, open mindedness and awareness of these differences will help us to make pain communicable and measurable. In a perfect world, the therapist can take as much time as possible to know his/her patient as a whole; in reality, time constraint is everywhere. The balance between idealism and reality? A heart willing to listen and a modest attitude of respect often open the door for the therapist to enter a patient’s life.
I came to the class trying to find the solution for some mysterious cases concerning my patients. For some, I might have found it with SRM. For others, their pain remains a mystery for me. Is pain always a gift that nobody wants? My answer: look for tactile hypoesthesia in our mind and knowledge. The better we understand pain, the more we can accept it as a gift. Pleasant or unpleasant, it defines our existence.
[1] Clinique de Médecine Intégrée Côte-Vertu, 475 Boul. Côte-Vertu. H4L 1X7 Montreal (Qc), Canada e-mail: leizhouot@gmail.com
