Individual institutional users set up and run their own CamCOPS server, so no data is transferred outside the hosting institution's control. The server, written in Python, provides clinically oriented and research-oriented views of tasks, including the tracking of changes over time. It provides an audit trail, export facilities , and full structured data access subject to authorization. A single CamCOPS server can support multiple research/clinical groups, each having its own identity policy . Intellectual property rules regarding third-party tasks vary and CamCOPS has several mechanisms to support compliance, including for tasks that may be permitted to some institutions but not others. CamCOPS supports task scheduling and home testing via a simplified user interface. We describe the software, report local information governance approvals within part of the UK National Health Service, and describe illustrative clinical and research uses.CamCOPS is a free, open-source client–server system for secure data capture in the domain of psychiatry, psychology, and the clinical neurosciences. The client is a cross-platform C++ application, suitable for mobile and offline (disconnected) use. It allows touchscreen data entry by subjects/patients, researchers/clinicians, or both together. It implements a large and extensible range of tasks, from simple questionnaires to complex animated tasks. The client uses encrypted data storage and sends data  There are strong potential advantages to the electronic capture of information relevant to cognitive and psychiatric assessment. Measurement-based care improves clinical outcomes . Some sivia an unencrypted network link; use inappropriate cryptographic algorithms; fail to prevent unencrypted PID being backed up automatically from a tablet to commercial “cloud” storage; or use servers hosted on insecure or third-party computers, including those in prohibited jurisdictions , which attempts to address these problems. It incorporates a number of common and freely available tasks, and can serve as a basis for the addition of further arbitrary tasks in the future. It is an open-source cross-platform system that uses touchscreen tablet devices or desktop/laptop computers for data capture. Instances of the client application (“app”) send their information securely to a central server, owned and controlled by the operating institution. The server provides a “front end” for convenient use by clinicians and researchers, with additional “back-end” facilities to support subsequent research analysis and system interoperability. CamCOPS offers many well-known questionnaires and some more advanced  tests relevant to cognitive and psychiatric assessment, plus structured and unstructured clinical record-keeping facilities. Data capture can be performed with the app offline, so the system can be used in places with no network reception, such as on domiciliary visits or in unusual radiofrequency environments. The system is compatible with UK NHS information security standards, though compliance with those standards requires other institutional practices as well. As the system is free and open source, we suggest it is suitable for others to use and extend.Data collection and storage is organized around a client–server model . Tablet The software system is designed to cope with clinical environments that use fully identifiable patient information, and with research environments in which participants are assigned a pseudonym or code and an individual's identity is not obtainable without additional information (the pseudonym-to-identity mapping) stored securely elsewhere. The flexibility to operate in both these environments is achieved by defining the meaning of multiple identification (ID) numbers and specifying the minimum and/or maximum information permitted.The system defines the following subject identity fields, not all of which need to be used: forename, surname, date of birth, sex/gender (M/F/X) , and an upload policy and a finalizing policy. The upload policy defines the identity information required for the client app to send data to the server. The finalizing policy defines the identity information required for the app to move data to the server, allowing erasure from the client device (with permanent storage on the server). This two-stage process allows data to be entered for new subjects before that subject is registered on a host institution's systems. Two examples may serve to clarify.CamCOPS supports two types of ID policy: an In a research environment using pseudonyms, the administrator might define the meaning of “ID number type 1” to be “Research ID.” The upload policy might be “sex AND idnum1”. The finalizing policy might be identical. Therefore, the system would accept uploads only if the researcher had entered a subject's sex/gender and research ID number , but would not require any other information. Indeed, other information might be prohibited, such as “sex AND idnum1 AND NOT (forename OR surname OR dob)”.In a complex clinical environment using fully identifiable records, such as a mental health Trust that operates its own patient numbering scheme but also provides urgent on-call services to several hospitals in its region, the administrator might define “idnum1” to mean “Hospital A number,” “idnum2” to mean “Hospital B number,” “idnum3” to mean “NHS number,” and so on. Suppose Hospital A is the provider institution. The upload policy might be “forename AND surname AND dob AND sex AND (idnum1 OR idnum2 OR idnum3)”, and the finalizing policy might be “forename AND surname AND dob AND sex AND idnum1”. This would mean a clinician could enter patient details in Hospital B, using Hospital B's number, without yet knowing the number used by their core institution . The system would require a full name, date of birth, sex/gender, and at least one ID number. At that early stage, the clinician could upload the data, and store a properly identified electronic copy in Hospital B's electronic or paper records. On return to their base in Hospital A, the clinician could look up the patient's number in Hospital A's system or register a new patient, and complete the record by filling in the Hospital A number (idnum1). At this point the software would allow the record to be re-uploaded and deleted from the tablet.The starting point of the client app is shown in Questionnaire-style tasks have a consistent user interface, indicating mandatory/optional data items and permitting progression when mandatory information has been provided. The questionnaire user interface is consistent across platforms . User customization of the interface is limited but includes font sizing for accessibility and language selection (discussed further below).Some tasks are intrinsically anonymous, in which case they are not associated with any subject information at any stage, visibly or invisibly.Tasks may collect information from the patient/subject alone, the clinician/researcher alone, or both together. Questionnaire-style tasks provide consistent colour-based visual cues as to the respondent. Tasks that involve the clinician's/researcher's judgement also record the details of the clinician/researcher conducting the assessment. These details may be pre-configured by the operator in advance so they are automatically entered, but may be edited, for example when a tablet-wielding clinician needs to document an assessment conducted by a more senior clinician. Some OSs  are not designed for multi-user use, and the CamCOPS client does not offer specific multi-user facilities, but it stores per-user data when running under multi-user OSs.CamCOPS also supports multimedia facilities in direct and indirect ways. Sound is used in some tasks, and the app can use the device's camera to capture photographs (such as of handwriting or other paper notes). In addition, text fields in CamCOPS can accept input from voice-recognition dictation systems supported by the OS.via a highly simplified user interface, and will then offer tasks to the subject automatically according to the defined schedule(s), moving data to the server whenever a task is completed.The operating mode described above is oriented towards interactive use by a clinician/researcher and patient/subject together or consecutively (“clinician mode”). In addition, CamCOPS also supports a “single user” mode. This is intended for patients/subjects to complete tasks by themselves, for example at home in advance of a clinic appointment or between appointments, or as part of an ongoing research study. To use this mode, the clinical or research team defines one or more task schedules on the server (such as a weekly PHQ-9 for 6 weeks), and registers the subjects. The subjects download the CamCOPS app and enter the server's URL (uniform resource locator) with an identification/security code. The app is presented Once complete, tasks may be viewed on the client device  or the server. Tasks are visible on the tablet until they are moved off it  and are visible to authorized users on the server as soon as they have been uploaded, and indefinitely thereafter.In the client app, tasks display summary details, such as the total score from a questionnaire, and often also a read-only facsimile of the full task, as seen by the subject or clinician during the task. The facsimile view is provided automatically for all questionnaire-style tasks.On the server, tasks provide an HTML (hypertext markup language) view, optimized for browsing speed, or a PDF (Portable Document Format) view, optimized for printing . Both shThe user may filter tasks by subject, date, task type, and so on, but may also search also by free-text content; thus, for example, all task instances containing the word “overdose” can be searched for, whether those “tasks” relate to initial psychiatric assessment, a progress note, or a comment made by a participant in a research questionnaire.The server also provides a summary view oriented towards text, and another oriented towards numerical data , both avThe online documentation  includesText used by the client and server software is internationalized, supporting arbitrary languages (with current text for English and Danish), and the task framework supports internationalization of individual tasks. Where tasks supported by CamCOPS have been translated and that translation validated, the framework permits the translated versions to be selected automatically. Users choose their preferred language dynamically.via formats suitable for third-party anonymisation tools , OpenOffice/LibreOffice (ODS open document spreadsheet format), tab-separated values (TSV), R script  though . In addion tools .Following the DRY (“don't repeat yourself”) principle of software engineering , CamCOPSThe CamCOPS server is an interface to a relational database with a well-defined structure. It is conceivable—but in our view highly unlikely—that institutions would wish to give users direct access to this database (which would circumvent standard security controls). However, for full access to relevant raw data, CamCOPS allows authorized users to download a relational database containing data of interest to and permitted to them, as well as downloading structured data directly to statistical packages such as R  Figure . RelatioA given institution may need to capture data in several different contexts. For example, it might provide a number of clinical services. Staff in those services might want to analyse their service's data in isolation but also see data for their patients that has been collected by other clinical services. Simultaneously, the institution might support clinical research using identifiable data. Researchers might typically be allowed to see only the data collected for their subjects as part of their study . Finally, the institution might support research using pseudonymised data.CamCOPS supports these usage scenarios simultaneously via groups. A group might represent, for example, a clinical service or a specific research study. Users belong to one or more groups, and upload data into a specific group at any one time. A group has its own set of ID policies (as above), and may, as a whole, be permitted to see data from specific other groups. Thus, for example, a clinical group might use fully identifiable data according to a certain identification standard, while a research group may use a study-specific pseudonym and prohibit direct identifiers. A researcher might belong to one or more research study groups, and only be permitted to see data collected within them. A different clinical research group might use an ID number type in common with clinical services, and the system can be configured to allow clinicians to see data from all clinical services plus “research” data for the same patients, without researchers being able to see “clinical” data.While is also possible to run multiple instances of the CamCOPS server, the group system is intended to make this unnecessary for most purposes.via different transmission methods . CamCOPSome tasks allow reproduction for institutions that have paid a license fee or undergone another registration process, but not otherwise. To cope with these, CamCOPS supports a method where the default task is only a data collection tool (as for type 4 below), with copyright-free placeholder strings such as “Question 1.” The institution may then choose to install an XML file containing the actual task text on their server instance(s). When the CamCOPS client app registers with the server, it downloads any strings specific to that institution. As these add-on XML files are not distributed with the CamCOPS itself (merely templates), the open-source licensing of CamCOPS does not conflict with the restricted licensing applicable to such tasks. Responsibility for any add-on files rests with the hosting institution, as does compliance with any licensing terms, including any training requirements.In addition, we had a local need to capture information electronically for tasks that are distributed commercially and cannot be distributed under an open-source licence, such as the Beck Depression Inventory . For thiWe note that ascertaining copyright status can be difficult, particularly for older tasks. For example, the Edinburgh Postnatal Depression Scale was published with a notice saying “users may reproduce the scale without further permission providing they respect copyright by quoting the names of the authors, the title and the source of the paper in all reproduced copies” , but thiThe CamCOPS information governance and security model is multi-layered. It is not sufficient to have a “secure” mobile application; a hosting institution must implement other security measures.Assuming that identifiable information is used at all, there are two main methods by which the CamCOPS app minimizes the amount of patient-identifiable information held on a mobile device.First, data exchange with the server is essentially one-way . Therefore, even if all the security measures (see below) were somehow circumvented, possession of a device implies possession of information about at most a few patients, created recently on that device. The app will not retrieve information created on other devices.move data to the server, not to copy it. Users upload when they choose, and can be prompted whenever a new task is complete. When they upload, they are offered a three-way choice. (1) The “move” option moves details of all patients and their task data to the server, deleting that data irreversibly from the device. If some patients do not meet the server's finalizing criteria, as above, then the user cannot move data until this problem is fixed. (2) The “move, keeping patients” option moves all patients' task data, but it keeps the basic patient details, so the user can add more tasks for these patients later. (3) The “copy” option copies data to the server, though it still “moves” patients or anonymous tasks that the user has explicitly marked as “finished.”Second, its dominant method of uploading is to Users are encouraged to move data whenever possible. However, the option to copy remains important, as in the multi-hospital example given above: when a patient has been entered using institution B's ID number, information must be uploaded and stored in institution B's records immediately, but institution A's number must later be added before that record can be finalized and moved to the server.Mobile device security is provided without the need for users to encrypt the entire device, since they might inadvertently fail to do so. All CamCOPS data is stored using the 256-bit form of the Advanced Encryption Standard (AES) cipher suite (AES-256) .As a general security feature, not specifically related to or required by CamCOPS for its security, users may also choose to encrypt their devices using a strong password. Android devices allow on-device encryption (for Android version 3 and higher). This encrypts applications' data areas with a passcode , 69. AppThe CamCOPS app has three security modes when running in “clinician mode”: Locked, Unlocked, and Privileged. In the Locked mode, the app is locked to a single subject and can only view or add records pertaining to that subject, or anonymous tasks. This mode is designed for a clinician/researcher to hand the device to a subject. It takes a single touch to lock the app, but it takes a password to unlock it. In the Unlocked mode, all data may be viewed and edited. This mode is designed for use by clinicians/researchers. Privileged mode is designed for administrators' use. In Privileged mode, features such as the following are unlocked: configuring the link to a server, registering the device with a server, and (if the device permits) exporting the local database to an insecure storage area such as a removable secure digital (SD) card. .CamCOPS requires the app password to start, and to access the encrypted databases. Since data security is prioritized, there is no recovery method if this password is lost: the app would require re-installation, with loss of any data not yet uploaded.In typical clinical use, an administrator might set up CamCOPS to point to the appropriate institutional server and then give clinicians the “unlock” password but not the privileged-mode password. This would not be impossible for an astute clinician to circumvent, by uninstalling and reinstalling the app, but the clinician is, after all, entrusted with the primary clinical information in any case. In practice, this extra level of security may help to prevent the clinician from misconfiguring the app by accident.via a privileged-mode data dump, so a malicious user who plugs the device into a debugging computer, such as via a Universal Serial Bus (USB) cable, will not see patient-identifiable data that way. The CamCOPS app stores its stores its “unlock” and privileged-mode passwords using irreversible bcrypt hashes . The app reads the ID descriptions and policies from the server at registration, and re-checks these before commencing an upload.via the app–server link. The server will not add new fields or tables based on the claims of the uploading agent, and will not upload to reserved tables or fields. The server takes standard precautions against SQL injection . The server accepts incoming data but will not provide unrelated data to the app. Therefore, even a hand-crafted app masquerading as an instance of CamCOPS and in possession of a valid username, password, and device ID cannot download sensitive data njection .via the web front end is secured as follows. The web front end is constrained to use HTTPS and therefore link encryption. This requires appropriate configuration of the web server hosting the CamCOPS installation, but is also ensured by CamCOPS through its session security methods. Access is governed by username/password pairs. The server stores all CamCOPS passwords using irreversible hashes , or a third-party authenticator app .Communication between users and the server e hashes ; passwore hashes . SessionInternally, the server must deal briefly with a clear-text database password, but encapsulates all such code with an error-trapping framework to prevent the password leaking, and promptly discards the password after connecting to its database.via the server's web front end is governed by user-based and group-based permissions. Users themselves may have superuser status (which gives unrestricted access to data and administrative functions via the front end), or be “locked” to a single patient record (when that user belongs to a patient/subject for “single-patient” mode), or be a routine “staff” user. Users may be a member of one or more groups. At any time, one group is selected to receive data uploaded by that user. Groups were discussed above. Groups define patient/subject identification criteria  and intellectual property restrictions. Groups “own” subsets of data, but groups (and thus their members) can also be granted permission to view data from specific other groups. User–group associations (group memberships) are associated with a further set of permissions: to administer the group , plus individual permissions to upload data, to register new client devices, to log in via the web front end, to view data for multiple subjects when no subject search criteria have been applied, to export data in bulk, to run reports, or to attach notes to uploaded tasks. These permissions provide fine-grained control over what users can see and do, but a security breach of a group administrator account, or even worse a superuser account, would permit large-scale access to CamCOPS data held on the server.Access to data via secure VPN access to them); configuring a firewall appropriately; limiting secure shell (SSH) access; ensuring that the web server does not offer CamCOPS data by any route other than via the CamCOPS web front end itself; ensuring that no inappropriate users have access to the back-end database systems stored on the server; ensuring that the server is backed up regularly; ensuring physical security of backups; and ensuring server availability  should this be required.The server must also be secured in other ways that are outside the scope of the CamCOPS system itself but are nevertheless critical. Standard security considerations include limiting physical access to the server; preventing visibility on public networks . If the server is on the open Internet, the network security requirement is eliminated, emphasizing the importance of network security for sensitive data, as well as strong passwords. This is the route of attack requiring particular security focus, since a predominant route of data theft is via “social engineering” rather than technical methods  password, or in other ways bypass the OS security. As before, without the CamCOPS password, this would yield only an AES-256-encrypted database.Steal a tablet and the tablet's OS password, download the open-source CamCOPS app, modify it, install it over the existing app without deleting the app data , and attempt to use the modified app to export data. Since the CamCOPS app does not know the password used to encrypt a given user's data, this conveys no benefit to the attacker; the database remains encrypted.n-bit key takes a mean of 0.5 × 2n + 0.5 cycles; therefore, a 256-bit key would take approximately 1.83 × 1059 years to discover by this method with a 10 GHz attack frequency. The universe is 1.38 × 1010 years old.Once a computer is stolen, it can be dismantled. One must therefore consider also the possibility of breaking the encryption. No practical method is known of breaking the AES algorithm used to encrypt tablet data. The US National Security Agency approves AES for US government information classified Secret (for AES-128 or higher) or Top Secret (for AES-192 or higher)  and the If a mobile device or other computer can “see” data on a remote server, then those data can be captured, even if by the simple expedient of saving a screenshot or taking a photograph of the device. This applies to any computer program, not just CamCOPS. Therefore, technical constraints are insufficient: users must be prohibited by cultural  constraints from saving or storing patient-identifiable information on mobile devices in non-permitted ways. Similarly, users must be encouraged to look after their computer devices carefully, locking them when not in active use.via the web interface are also audited and logged, as are command-line CamCOPS operations by administrators.Client-side audit trails are minimal, but the app time-stamps all tasks at their creation, and time-stamps the last modification to any record, as well as collecting information relevant to the time it takes to complete each task. In contrast, there is significant audit logging on the server. The CamCOPS server maintains a number of task-specific tables. To each record, the server adds fields allowing an audit trail. When a record is modified or deleted, the old versions are kept. The server's tables therefore contain a snapshot of each device's current state, and a complete audit trail, whose granularity is the frequency of uploads from a particular device. Access requests to the server Crashes in the CamCOPS app should not  affect data integrity, because the SQLite back-end, with perhaps 500 million deployments worldwide , is desiData loss remains possible. Reasons for this may include factors outside the CamCOPS system, such as a server environment that is insufficiently robust to cope with power loss or disaster. An amateurish example would be a server without an uninterruptible power supply (UPS). An example of server failure in an NHS high-availability environment was the Buncefield oil depot explosion on 11 December 2005, which temporarily disabled some laboratory computer systems used by our local acute hospital because a major computing provider was located near that depot.As with any software system , it is aHowever, CamCOPS is not presently accredited to NHS Interoperability Toolkit (ITK) standards or certified as a primary part of a clinical record. Therefore, a core requirement of data security would be to ensure that any information of sufficient importance be copied  promptly from CamCOPS to a certified information storage system, such as an institution's primary EHR. To enable automatic copying of CamCOPS data into a certified information storage system, CamCOPS provides automatic export facilities (as above).relative security or risk of an electronic approach compared to its alternatives, which are often far from risk-free. In areas with no Internet connectivity, the alternative to storing patient-identifiable data on a mobile device is usually to write it down. Paper-based methods can be less secure than their electronic equivalents , subject to the EHR having the capability to receive it .In a research context, information-handling procedures will be directed by an appropriate national or institutional research governance framework e.g., , 94]. Cl. Cl94)].All tasks allowing free-text entry, and many established structured questionnaires in psychiatry, permit the capture of risk-related information, such as about suicidality. If such information is captured without direct supervision by a clinician, it is vital that a clinical service or research study has approved methods for handling such information. Most critically, patients/subjects must be aware that reporting information to an app is not a substitute for talking to their clinical/research team or obtaining emergency health care if required. Users must indicate that they understand this in order to use the app, but appropriate expectations must also be set by the institution operating the software.CamCOPS is designed to operate as a translational research platform, implementing human-specific and cross-species tasks derived from basic neuroscience research. Some experimental tasks are included in CamCOPS and are clearly labelled as such; more may be added.CamCOPS development began in 2012 and the first version of the client, written in the Titanium cross-platform Javascript framework , was avavia an internal secure e-mail system to an administrative team, who uploaded them to the patient's EHR.As a clinical example, CamCOPS has been operational in CPFT's perinatal mental health service since 2019, where it is used to record questionnaire data relating to symptoms and service experience. Notably, the version of the EHR system in use did not have the capability to receive an automatic data “feed” from CamCOPS. We therefore used the poor substitute of having CamCOPS automatically e-mail tasks (on receipt) Examples in a research context include the Insight study  and MOJOvia a variety of commercial models. Some systems offer extensively validated complex cognitive assessment tasks via a closed-source model with provider-hosted data  or animvia passive data collection  and drafted the manuscript. MB contributed to the design and development (2019−). Both authors contributed, edited, and approved the final manuscript.RC was supported by a Wellcome Trust postdoctoral fellowship (091998/Z/10/Z). RC's and MB's research was supported by a UK Medical Research Council (MRC) Mental Health Data Pathfinder grant (MC_PC_17213 to RC). Deployment was supported in part by the UK National Institute of Health Research (NIHR) Cambridge Biomedical Research Centre (BRC-1215-20014). The work was conducted within the Behavioural and Clinical Neuroscience Institute, supported by the Wellcome Trust (093875/Z/10/Z) and the MRC (G1000183).The views expressed are those of the author and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.RC consults for Campden Instruments Ltd., in the area of research software and receives royalties from Cambridge University Press, Cambridge Enterprise, and Routledge. The remaining author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Rare diseases (RDs) constitute an important public health issue. However, although public awareness campaigns focus on the improvement of undergraduate and postgraduate education, also popular culture may serve as an educational tool in this field. This study aims to analyse how rare genetic diseases are depicted in popular movies.Twenty popular movies on RDs were analysed quantitatively. The main categories included in the coding frame were: disease, patient, physician/scientist and psychosocial issuses related to RDs.The majority of movies do not contain adequate scientific information on RDs. Consequently, their cinematic image is either inaccurate or simplified. However, the cinema does take up some important topics in the field of RDs and highlight their ethical, psychosocial, legal or economic dimension: the diagnostic and therapeutic odyssey, the role of RD patients’ advocacy groups in the production of scientific knowledge, the problem of orphan drugs, the stigmatisation of and discrimination against RD patients, and the impact of diagnosis on one’s concept of self and parents’ feelings of guilt.Although popular movies mostly focus on RD patients’ problems of daily living and rarely describe clinical aspects of RDs, they do have an educational potential. Thus, movies can help to raise the public’s awareness on the psychospocial and economic problems faced by RD patients and their families. Rare diseases (RDs) are chronically debilitating or life-threatening conditions with a high level of complexity despite their low prevalence of less than 5 per 10,000 persons , 3. WhatThus, it has been argued that because RDs constitute an important medical and social challenge and an urgent public health issue, they should be prioritized by policymakers, healthcare providers and medical education campaigns alike –20. AlthHow do films depict RDs? Do they familiarize the audience with the knowledge on the symptoms, etiology and treatment of RDs?How do films frame RD patients?What images of physicians and scientists emerge from popular movies?What are the psychosocial, ethical and economic implications of RDs depicted in movies?Thus, this study analyses how rare genetic diseases are presented in popular movies. At the same time, while it was primarily focused on the dominant images of RDs in films, I was also interested in the following questions:http://www.filmweb.pl) and Internet Movie Database (http://www.imdb.com). Then the available plot descriptions were compared with predefined key words: “rare disease”, “genetic disease”, “orphan disease”, “terminal illness”. Additionally, data from the movie databases included the year of production, genre, producing country and director.The sample of movies was designed according to a content-based criteria. A movie search was conducted in May 2021 using the two electronic online movie databases: Filmweb  or Awakenings  were also excluded. Similarly, films where the RD is a backstory and was only mentioned but was not developed, i.e., The Big Sick (adult-onset Still’s disease), Shallow Hal (spina bifida), Glass (osteogenesis imperfecta), The 6th Day (cystic fibrosis), Dancer in the Dark (Pigmentary retinitis), The Sea Inside/Mar adentro (cadasil), Amélie/Le Fabuleux destin d’Amélie Poulain (osteogenesis imperfecta) or Unbreakable (osteogenesis imperfecta), were also omitted. Also movies addressing fictional RDs, i.e. Star Trek Nemesis , Blade Runner (“Methuselah Syndrome”), The Curious Case of Benjamin Button (“Button disease”) or Waterless  were not taken into consideration. Strictly for this reason, although the main character in the movie Poder has albinism, it was excluded because he has also paranormal powers, including telepathy. Finally, movies in which parents make their children believe they suffer from an RD (i.e. severe combined immunodeficiency) due to their overprotective nature, were also excluded .To provide more homogenous results, television series with a medical theme, i.e. y movies  on RDs, http://www.boxofficemojo.com), which, at least to some degree, reflects the scale of their reception.Simultaneously, I am aware that while the selection of the movies included in the analysis neither is nor could be representative, it does not exhaust other interpretations. However, I believe that the selected movies possess a narrative utility because they provide a unique insight into the cultural images of RDs in movies that can easily be recognized by the public. I am also convinced that this research shows that movies both reflect and (re)construct the social images of rare genetic disease. Additionally, to make sure that the selected movies reached a wider audience, their box office have been checked , severe combined immunodeficiency, osteogenesis imperfecta and xeroderma pigmentosum (n = 10% apiece) that were the most prevalent in the movies , operations (15%) or some experimental therapy (20%), the majority either do not mention these (20%) or stress explicitly that there is no evaluable treatment for RDs (20%). 70% of the cinematic patients did not receive any type of medciations, 45% suffered pain and 35% received hospital or palliative care. In 50% of the movies the disease leads to the patient’s death. Interestingly, only two movies made any reference to a patient advocacy group (35%).RD patients presented in the movies were predominantly male (60%), Caucasian (80%), or children (56%) who lived in rather stable social environments and were cared for by their families at home (60%) Table . The morThe prototypical physician portrayed in movies was also Caucasian (75%), middle aged 46%) and male (83%) , others stressed how employers, co-workers or schools refuse to meet patient’s needs . Other films focused on interpersonal stigma which occurs in patients’ interactions with other individuals, including peers or neighbours. Thus, by showing lack of understanding from others, the movies suggested that RD patients suffer not only from the lack of diagnosis or treatment but also social support . Finally, some films highlighted how RD patients suffer from a felt stigma and how they become somehow accustomed to being subjected to discrimination from others. Thus, The Boy in the Plastic Bubble, Mask, The Mighty, Children of the Dark, Wonder or Ondine show how RD patients, especially those with visible symptoms, feel shame about how they look or act because of their RD. All in all, most movies under the study showed how discrimination resulting from genetic condition reduces one’s life opportunities, contributes to social inequity and negatively affects those with the stigmatized trait.Interestingly, irrespective of the veracity of the description of RDs, the vast majority of films highlighted RDs related psychosocial issues Table . Thus, aAlthough cinematic depictions of more common diseases have been the object of previous studies –37, to tThe Boy in the Plastic Bubble, Mask or Jack provide the audience only with the most basic information about the RD discussed in the movie, such as its name, that it is rare, and of genetic origin. On the other hand, while the cinematic description of cystic fibrosis in Jack and Jill vs. the World or And I’ll Be Dead Tomorrow Noon or the Treacher Collins syndrome in Wonder is reduced to a couple of sentences expressed in scientific jargon, other movies, i.e. The Elephant Man, Crystal Heart or Simon Birch give no such information whatsoever (sometimes they even do not mention the name of the disease). What is also problematic is that many movies use RDs solely as a Hollywood teen love plot device. Thus, as they focus more on patients’ desire for the mundane pleasures in life [The Boy in the Plastic Bubble, Crystal Heart, Jack and Jill vs. the World, Midnight Sun or Five Feet Apart). Finally, while some movie explore caregivers hopes and struggle to find a test or drug, they often falsely paint a picture of a miracle cure (Lorenzo’s Oil).At the same time, it should be stressed that because the majority of movies do not explain the specificity of RDs and often lack a more detailed scientific information on the RDs discussed in the movies, their cinematic image is rather superficial and vague. Cosnequently, the educational role of movies on the clinical dimension of RDs is limited. However, this should not surprise, as the main aim of popular culture is to entertain the audience rather than to educate. Because film is also a commercial product which needs to find an audience in order to make a profit, most popular movies introduce RDs only by highlighting their symptoms without adding a more detailed description. Conseqeuntly, they often rest on simplifications and reduce the information about the genetic aspects of RDs to a minimum in favour of making the picture more attractive and dramatic. Moreover, rarely do they explain the genetic basis of the disease discussed in the movie, and the majority do not contain any scientific information on RDs. Finally, some RDs are presented inaccurately and/or incorrectly. Especially the older movies, such as  in life  they romHowever, this is not surprising because numerous studies indicate that cinematic depictions of common diseases too are often stereotypical, inaccurate and characterized by misinformation about symptoms, causes, and treatment. For example, people suffering from schizophrenia are frequently portrayed as unpredictable, violent, dangerous or committing homicide. Moreover, while the filmmakers tend to focus on hallucinations, traumatic events and violence, schizophrenic patients’ socioeconomic status is also unrealistic , 40–42. Lorenzo’s Oil, The Mighty, Extraordinary Measures and Five Feet Apart, provide the audience with detailed scientific information about the diagnosis of the RD, its aetiology, signs and symptoms, the availability of genetic testing and management, including therapy and medications or recent breakthroughs in understanding the disease. Consequently, the painful realities of adrenoleukodystrophy, Morquio syndrome, Pompe disease and cystic fibrosis depicted in these movies are particulary reliable and may increase public knowledge on these diseases.Nevertheless, some movies dealing with RDs contain “kernels of scientific truth” , 50. In . Moreover, while the cinematic physician frequently fights the bureaucracy that impedes patients’ access to available drugs or novel treatment options, he or she is not an alienated or dull individual, but a dedicated and tireless hero struggling to help vulnerable patients. For example, while in Extraordinary Measures, dr. Stonehill is a hard-working and rational researcher whose revolutionary medical theories and innovative research help to develop an enzyme treatment for Pompe disease, dr. Fleming in Midnight Sun is pictured as a caring physician, who cares for a girl suffering from a life-threatening sensitivity to sunlight caused by a rare genetic disorder.This study also confirms previous findings regarding the cultural representations of scientists which show that although especially in earlier movies there was a tendency of the vilification of scientists and the good scientists were in the minority, from the 1990s and 2000s onwards the cinema has seen the ascendance of heroic scientists, who are pictured as idealist and hardworking professionals. Thus, while Andrew Tudor’s , RoslynnFive Feet Apart depicts patients’ experience with the disease, including coughing up blood, the inability to catch one’s breath, emotional distress related to anticipated death, patient’s dependence on the health system and the individual’s everyday struggle with hospital life. Similarly, both Lorenzo’s Oil and Extraordinary Measures show how deficits in scientific knowledge on RDs results in a confusing, chaotic, expensive and long-lasting diagnostic and therapeutic odyssey [Children of the Dark dr. Burnham while referring to the problem of orphan drugs explains to the parents of two girls suffering from xeroderma pigmentosum (XP) that it is not AIDS or cancer and therefore does not attract a lot of attention and that finding the cure for the RD may be ‘a billion dollars and generation away’. Thus, while movies often cover parents’ high hopes in research advances and their attempts to seek tests and drug trials, popular culture may help the public to understand how hard it is to handle the fiscal issues of RD drug development, how RD patients and their families struggle to get orphan drugs developed or how the bureaucracy impedes patients’ access to available drugs or novel treatment options. Simultaneously, movies like Lorenzo’s Oil or Extraordinary Measures stress the role of patient advocacy groups in RD research [At the same time, even though the cinematic portrayals of RDs often do not reflect the current scientific knowledge, movies do take up some important topics in the field of RDs. Indeed, while biomedicine often focusses on the clinical aspects of RDs, movies highlight their ethical, psychosocial, legal or economic dimension, which are often overlooked in the scientific discourse. For example, while picturing experimental therapy for cystic fibrosis  odyssey , 59. Theresearch –62.The Elephant Man, Sixth Happiness, The Mighty, Simon Birch, Wonder or More Beautiful for Having Been Broken experience prejudices, social exclusion and reduced life opportunities, in the movie Mask “Rocky”, who has craniodiaphyseal dysplasia, is also denied access to public school, and Jim’s daughters with XP in Children of the Dark refuse to organize their first sleepover with friends because ‘no one likes them’. Additionally, many movies emphasize that as a result of RDs the entire family faces stigmatisation, marginalization and discrimination from the neighbours, peers, work colleagues or local community.However, it is psychosocial issues related to RDs that are the most common tropes portrayed in the cinema. Indeed, all the analysed movies bring public attention to social stigmatization, isolation or discrimination resulting from patients’ rare genetic condition , 64. ThuThe Boy in the Plastic Bubble, Tod, who suffers from severe combined immunodeficiency, becomes depressed after spending his entire life in incubator-like conditions, not being able to see the outside world and meet other people, and one day shouts loudly: “I’m so sick of it. I’m just feeling like a hospital case, like a weird kid who can’t even breath normally because I’ll get sick and die”. Similarly, the title character Alex, a girl with cystic fibrosis, confesses to her father: “This disease is getting much bigger than me… I have to do what it wants me to do… And maybe if I try to be its friend it would be so angry with me” (Alex: The Life of a Child). The Polish movie Ondine depicting the story of a young male suffering from congenital central hypoventilation syndrome who hides his disease from the girl he loves and who fears to reveal his condition to the outside world illustrates how disease invades every part of Cezary’s psychological self.Most movies also highlight how RDs affect patients’ entire life, influences one’s concept of self and become a source of self-stigma , 66. ForLorenzo’s Oil and Jim in Children of the Dark expressed recurring feelings of guilt and a strong sense of responsibility for what had occurred to their children, and couldn’t stop blaming themselves for passing on “bad genes” to them. Finally, movies often stress how RDs affect family dynamics and relationships and creates tensions between spouses or between parents and their healthy children .Another important theme depicted in movies includes the parents’ feelings of shock after receiving test results and their experience of self-blame , 68. ForAlthough popular movies have a great educational potential , 27, 28,Thus, it should be also noted that the cinematic images of RDs are not isolated artefacts but unique products of a complex cultural activity: while they reflect, to some degree, the social imagination on such diseases, they also influence the public’s perception of RDs. Indeed, popular culture constitutes a unique symbolic resource and a “guide” which helps the audience to understand RDs. Even though the impact of popular culture on society is not decisive, it provides the public with images, examples and arguments for discussion on the clinical, psychosocial, ethical and economic implications of RDs. Cosnequently, as movies do co-create the interpretative context, they can significantly shape people’s cultural values and social attitudes towards such diseases and may affect changes in existing RD legislations.To conclude, because popular culture is currently one of the most important mediums and resources from which the public derives its knowledge, it is hard to overestimate its influence on the public understanding and acceptance of RDs—the reason for this being that popular movies reach a much wider segment of society and a single cinematic picture may have a bigger impact on social attitudes towards RDs than formal education. This is especially so in that for individuals who do not have contact with or access to science, movies are often the only source of information on RDs. Consequently, while the need for stronger educational initiatives for both medical students and healthcare professionals is required, popular culture, including movies, can also serve as an educational tool in this field.This study has some limitations. First, because the entire number of films picturing rare genetic diseases cannot be adequately determined, the selection of movies included into the analysis neither is nor could be representative. Second, only twenty popular movies on RDs were included into the analysis. Consequently, it would be desirable to extend the analysis and compare the content of popular films with different video formats that were not included, i.e. documentaries, short movies or even animations. Third, because the vast majority of the analysed movies were produced in the United States, the study sample is somehow biased as it under-represents European, Hispanic and Asian cinema. Fourth, as the entire analysis was performed by one author alone, there was a higher risk of subjectivity that might have influenced both the choice of the movies and the interpretation of the data. Finally, while it seems reasonable to argue that by using movies, popular culture puts the abstract and dire clinical information into the context of people’s lives and thus advocates for RDs and increases public awareness of such diseases, it is unclear if and how far the audience responds to and is influenced by movies. However, despite these limitations, some advantages of this study should also be acknowledged. Most importantly, as there is a scarcity of previous work on the topic, this research fills a gap in the literature regarding the cinematic representations of rare genetic diseases. Moreover, by providing new insights, it emphasises the role of popular movies in enhancing the public’s understanding of RDs.


People who receive a ‘solid’ organ transplant from a deceased person may experience imaginative challenges in making sense of how the transfer impacts their own past and future, as shown in existing scholarship. Building on such work, this article considers how the temporalities of medical encounter itself may also become temporally ambiguous, posing representational challenges both pre-transplantation and post-transplantation. The dominant narrative of transplant in transplantation journals and hospital communications, both clinical and patient-facing, presents surgery as a healing moment, yet the recipient’s experience of hospital, pharmacology and daily self-monitoring may be disorienting in multiple ways which resist conventional conceptions of medical temporalities of cure. Examining memoirs by Robert Pensack and Richard McCann, this article suggests the transplant temporalities may be fruitfully approached through scholarship of ‘queering’ time and ‘crip’ time. While the medical narrative of transplant focuses on the event of transplantation, these texts construct post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways. I do not purport to uncover the ‘truth’ of bleak survival hidden within a story of the miraculous. Rather, I am reaching for a critical practice to recognise subtle entanglements of medicalised time, and identify a tension and synthesis between miracle and the chronic, an insight which may also be of service for other critical approaches to memoir of heroic medicine. I will suggest that some memoirs of heroic medical intervention can be characterised by a tension between two kinds of narrative time. On the one hand, the works foreground the temporality of ‘miracle’—an exalted, epiphanic moment when conventional possibilities are exceeded and life is saved and transformed through exceptional means. On the other hand, the works are informed by the chronicity of long-term illness management, the long durations of both presurgical anticipation and postsurgical aftermath. I do not seek to present the latter as a straightforward corrective to the former, puncturing the illusion of restitution story. Rather, I am interested in the way that these two temporalities necessarily overlap within the narration, notably meeting across images which simultaneously evoke both repair and chronic incurability. The analysis may also be of service for other critical approaches to memoirs of heroic medicine.event, while acknowledging that the recipient will need to follow a pharmacological regimen of immunosuppressants and monitoring for organ rejection. When surgery is emphasised as a remarkable healing event, a time-bounded medical feat which blurs boundaries of life and death, it is not surprising that a language of ‘miracle’ has gathered for centuries around the concept of solid organ surgical transplant from deceased donors. According to legend, in the 6th century CE, Saints Cosmas and Damien conducted the first transplant—a leg from a dead man to a living one—and that story was painted for centuries  can fruitfully be considered in terms of Gilles Deleuze and Felix Guattari’s concept of ‘assemblage’, a blend of materials tangible and intangible, organic and not, with variable trajectories of deterioration, connecting ‘states of things, bodies, various combinations of bodies, hodgepodges … utterances, modes of expression and whole regimes of signs’ 177. Marwaiting, strange, a defamiliarisation from a ‘self’ and from temporal rhythms and aspirations taken for granted by wider culture.Throughout, I will tend to speak of ‘tissue transfer’ rather than the more widely used ‘transplant’. ‘Transplant’ emphasises the event of the recipient’s surgery, while ‘tissue transfer’ more readily encompasses donor surgery and the panoply of mediating practices, parties and structures involved in the movement of tissue 3–4. TheThe two memoirs are American, and first published in 1994 and 2000, respectively; as such, their representations are not generalisable across other places or eras. The protagonists are privileged in that they have access to transplantation: in countries without universal healthcare, potential recipients confront a ‘“green screen” of ability to pay’, as Renée Fox and Judith Swazey phrase it , a financial barrier for the surgery and for the subsequent immunosuppression that surgery necessitates. Furthermore, these works are about legal transfer, administered by government-sanctioned apparatus; as such, black or ‘grey’ market transfer, or government-sanctioned organ sale as can apply in Iran, would raise different issues. This specificity is important not least in that the texture of waiting within these works is informed by a sense of being held within a vast, legal, socially-sanctioned apparatus, simultaneously impersonally benevolent and opaque.The memoirs I will examine invoke miracle, but alongside the epiphanic miraculous they also explore the slow duration of chronic illness, etymologically illness in-and-of time. The latter temporality is not separate from the surgical intervention, but is in fact attendant on and entangled with that intervention. These memoirs are, technically, about ‘recoveries’ in the sense that both transplant recipients survived their transplant and medically speaking did well afterwards, yet both show that process to be inextricably entangled with a non-curative story. These temporalities are tightly interwoven through the works, and as I will show, both works infuse a single, shared image with the meanings of both kinds of time. Waiting becomes relevant to both.Becoming a transplant recipient begins with waiting: not only for an organ but also, often, waiting to be ill enough to be added to the list, while enduring deterioration and surgical and medical procedures of monitoring and maintenance such as kidney dialysis or cardiac pacemaker insertion. Statistics on waiting times vary within nations, regions and organ types, but it is often a matter of years, if an organ becomes available at all. In the UK, for example, while about half of prospective recipients receive kidney transplants within 1–3 years, some hard-to-match prospective kidney recipients wait for 7 years or more, and in the case of heart transplant, median waiting times vary and are influenced by region and blood group, but can again be years . WaitingThe wait for transplant can be emotionally challenging. In addition to apprehension over one’s own survival and the outcome of the wait, the prospective transplant recipient may also feel guilt over what they are waiting for, if the organ is such that the death of another will be required to procure it 251–52. unpredictability is very possible and indeed inevitable, given the realities of slow chronic rejection even if acute rejection can be averted. The routine is likely to be interrupted, and that interruption spells danger. In this way, scans and tests may evoke apprehension and suspense; ‘prognostic’ time, as Jain defines it, remains relevant. This temporality echoes the experience which Nancy K. Miller illustrates in her comic panel ‘Scanxiety’ . Salient here is Eric Cazdyn’s concept of the ‘new chronic’, in which symptoms are predictably managed, and ‘the utopian desire to cure is displaced by the practical need to manage and stabilise’ 6. Cazdyanxiety’ . Not a tanxiety’ 221. RecWaiting need not necessarily be negative. The poet John Keats exalted the virtues and satisfaction of fostering a spirit of ‘negative capability’, tolerating ‘being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason’, and mindfulness practices across many spiritual traditions have long valued suspended, attentive states 193–94. When the doctor or nurse enters the room to do something … he or she remains within vectored time, that is, a state of time in which one event leads to another and can even be conceptualized as having caused it while the patient inhabits a timeless enduring. When the pediatrician John Lantos depicts the difference between being a patient and a doctor, he figures it in literary terms, suggesting that patients dwell in modernism’s focus on the interior while doctors enact the pre-modernist choice for acting, causing, derring-do. 44This passage describes the asymmetrical agency which may characterise the dynamic between patient and practitioner, particularly as represented within restitution stories of medical cure. Patients often have to be patient, and that patient patienthood blends passivity and agency in sometimes paradoxical ways. Deborah Steinberg describes how neoliberal patienthood idealises a certain faith in therapeutic trajectory: it involves a particular orientation in time, a compliance and active surrender in service of an imagined cured future 131–32.Much work in medical humanities has sought to articulate and nurture patient agency within disempowering contexts . LiteratWaiting is always a material, embodied practice. It takes place in a wide range of institutional contexts, each riven with complex demands, legacies and financial imperatives, and it is affected by changing cultural assumptions about patient roles and about which lives merit which kinds of care 100. Waiinvents illness as temporary’. Hours on waiting rooms chairs may not coexist well with the ‘chrononormative’ imperatives of the capitalist clock as Elizabeth Freeman describes it, ‘organiz[ing] individual human bodies toward maximum productivity … forms of temporal experience that seem natural to those whom they privilege’ (2010).The imperative to work, and to reproduce oneself for labour, has become further entrenched with contemporary neoliberal expectations about individual ‘resilience’ . The ‘waIllnesses like those which precede—and follow—transplantation may sit uneasily with medicine’s narratives of linear progress, as well as with wider cultural stories of how lives should flow. Jain describes the strange temporalities of ‘prognostic time’ with degenerative illness, noting that ‘living in prognosis severs the idea of a time line and usual ways one orients oneself in time: one’s age, generation, and stage in the assumed lifespan’ . Long-teQueer theory and crip theory offer ways to dwell critically with such transgressive temporalities. Queer theory offers multiple ways to think about time outside linear progress, finding alternative senses of time which may coexist within representations of such dominant arcs. Lee Edelman, for example, challenges reproductive assumptions that tend to underpin imagined futurities, and Jack Halberstam invites us to recognise the freedoms and potentials within ‘failure’ to mesh with conventional expectations . CulturaI try to think against the dominant arrangement of time and history … in which historical narrative … organizes various temporal schemae into consequential sequence …. Instead, I track the ways that nonsequential forms of time  can also fold subjects into structures of belonging and duration that may be invisible to the historicist eye. In different ways, then, ‘queering’ temporality means opening to the alternative futures beyond, for example, heteronormative reproductivity or predictable sequences. Such alternative forms of time can enable unexpected connection and community, pleasures flowering in temporal interstices. Yet ‘queer time’ may also be understood as wistful, melancholic, static and even deathly, as Heather Love shows, sometimes framed pejoratively as ‘backward’, immature, failing to fulfil evolutionary expectations (2007). If a culture figures futurity as the multiplication of life through reproduction, then refusal of that trajectory would seem deathly by the yardstick of that culture and, by extension, can be read as symbolic of a rejection of life. Edelman, drawing on Lacanian hermeneutics, notes: ‘the death drive names what the queer, in the order of the social, is called forth to figure: the negativity opposed to every form of social viability’ (2004). While not all queer theorists read queerness as negation, many comment on queerness as culturally associated with deathliness, unnaturalness and refusal. Love and Freeman, for example, recognise senses of community that entangle awareness of death and impasse, and Halberstam acknowledges ‘history of representations of homosexuality as loss and death from Proust to Radclyffe Hall’ (2011).Within disability studies, too, ‘crip theory’, itself indebted to queer theory, identifies alternative temporalities to particular idealisations of productive progress. Disabled experience can sit particularly uneasily with the way such progress arcs assume ‘curative time’, in which bodies are healed and normalised within a culture’s expectations. In an effort to carve out imaginative space for alternatives to such temporality, Alison Kafer adapts the concept of ‘crip time’—a wry, in-group term long affectionately used within communities of people living with disability, to denote the way things may take longer for us when dealing with maladaptive environments or other challenges. Kafer broadens the term to encompass alternatives to curative temporality:Futurity has often been framed in curative terms, a time frame that casts disabled people (as) out of time, or as obstacles to the arc of progress. In our disabled state, we are not part of the dominant narratives of progress, but once rehabilitated, normalised, and hopefully cured, we play a starring role: the sign of progress, the proof of development. 28Similarly, Ellen Samuels describes crip time as ‘time travel’, in that:Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings …. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear. para 5In cultures which assume worthy lives are those which are conventionally productive in a capitalist sense, ‘crip time’ may at times be used as a slur. Adapted by Kafer et al., the term is informed by awareness of social cruelties, maladaptive environments and the ways that disablism exacerbates suffering, prolongs time and effort to do things and curtails futures. Yet despite these bleak dimensions, the concept of ‘crip time’ does not equate with inevitable despair, but rather conveys ambiguity and creativity, alert to the perils of structural conditions and normative assumptions even while seeking to imagine and articulate alternatives.Transplantation memoir, fiction or film-making may confirm progress narratives of triumphant medical advance and hegemonic conceptions of normative reproductive futurity in, for example, memoir, media reports, fiction or films, which idealise intrafamily donation as confirming existing familial bonds, while resisting more unconventional intimacies that might develop between, for example, recipient and donor kin 57. The Les yeux sans visage (1960), shows progressive rejection of skin graft on screen, unfolding over time. The decay of the skin is accompanied by a dramatisation of the postsurgical melancholy of the transfer recipient, Christiane, afflicted by inevitable rejection in the absence of effective immunosuppression:Elsewhere I consider how an early cinematic fantasy of tissue transfer, the film’s fantasticality, its dream-like evocation of post-transplant suspense and melancholy, is anachronistically valuable now in expanding our rhetorics of potential post-transplant temporalities and subjectivities: the intuition of the body made strange, the sense of a restored ‘intactness’ that feels not one’s own, and the need to watch and fear for clues of graft failure. While the film may be fantastical, these affects are not. 147.Les yeux, but these works, too, feature productive ambiguities, showing how triumph and estrangement may coincide.The memoirs that I examine in this present article describe medically successful tissue transfer, unlike the failed transfer depicted in the fantastical béance’, ‘an opening through which passes a stream of unremitting strangeness: the immuno-depressive medication, and others’  and Francisco Varela’s ‘Intimate distances’ (2001). Nancy describes aftermath as a ‘gaping open’, ‘ others’ 10–13. Vdelibly’ . The memsocial, a waiting-with others. Third, this waiting is informed by an awareness of death: death is part of the waiting ‘for’, and awareness of death somehow infuses all other aspects of experience. These three dimensions of waiting invite connections with crip theory’s recognition of eluding curative time, and the intuition of a sociality within waiting that emerges within both crip and queer writing, including intuitions of connections occurring within and across death.The waiting in these texts has three elements: first, it occurs within non-curative time, and—related—this waiting is effort, painful, often exhausting, a long-term labour. Second, this waiting is Raising Lazarus, cowritten with Dwight Williams, describes Pensack’s lifelong struggle with what was known at the time as idiopathic hypertrophic subaortic stenosis, now called hypertrophic cardiomyopathy Confidence continues to characterise his expectations of his own healing, and as described above, the narration generally presents surgeries as highly empowering, in which he is positioned as an agent rather than a passive participant. Yet there are exceptions, and one of the most striking occurs during a heart catheterisation, when he is treated as merely a normal patient. He senses something is wrong but his attempts to communicate his concerns are dismissed with platitudes. His panic mounts:I feel the Swan [Swan-Ganz catheter] floating down my neck, and with it comes the overwhelming grip of claustrophobia. Suddenly something feels wrong. An eerie movement high up in my chest …. The potential for devastating infection, heart attack, arrythmia, or puncturing the heart wall is always there. The procedure is no less bizarre and seemingly barbaric than something dreamt by a diseased mind, the mind of Dr Frankenstein, Dr Moreau. Yet my tentative future lies within the sleepless walls of this hospital, in the cold hands of masked surgeons. I am merely a purveyor of nameless static rage. (212–13)Pensack uses explicitly Gothic intertextualities, in line with a long tradition of life writing and scientific writing informed by that literary mode . In thisA similar chilling futurity emerges during his bouts of postsurgical psychological distress, after both his initial pacemaker insertion and his heart transplant. During both these experiences, ‘vectored’ time gives way to an endless and menacing present. During surgery to narrow the muscle constricting his heart, his heart’s electrical function is permanently impaired and a pacemaker is implanted. After this surgery, Pensack experiences profound depersonalisation, agoraphobia and traumatic flashback, feeling “at the mercy of a chaotic universe with no order, no security… All I know is that I am naked and alive”; “as I sit in the vacuum of darkness and silence… I think of those ancient photographs of dead relatives on my father’s nightstand. Their eyes gazed back almost expressionless, as though they were remembering us, not us remembering them. The haunted legacy” . Here, postsurgical trauma disrupts a sense of linear medical progress and a personal sense of history and agency. Times flows in strange ways, the dead remembering the living-who-are-yet-to-live. Intense psychological dysfunction also follows the transplant surgery itself, when the unusually long surgical procedure and his reaction to prednisone triggers ICU psychosis:my body lies still, as though shattered by what it has seen. All about me is a jangled music of beeping woven into a liquid light, tainting all colour that of the laboratory of Dr Moreau. This scene isn't so futuristic as it is macabre. From out of my chest extend tubes that drain fluid from the hollowed pocket holding my heart as it quivers …. The entire body holds the general yet acute expression of shock in its utter stillness… I should be dead and the body knows this …. I grow insane, I have no concept of time …. It is a private nightmare, a wilderness of mirrors. The definite article—‘the body’—shows his estrangement from his own body. This fractured state is in opposition to the framing of heroic medical agency that dominates the rest of the memoir, yet literally coexists with one of the cornerstones of that version of that empowering story, for it is now, in this state, that he needs the treatment with the ALG which he helped manufacture decades earlier (258). Despite both Starzl and Pensack foregrounding his earlier contribution to the development of ALG, in the moment that when he actually receives it, the temporality of heroic cure entangles with timeless madness and suffering.Pensack’s meshing of the modes of miracle and chronic crystallises in his use of the Lazarus image. Pensack uses the word ‘miracle’ often, such as in his 2005 afterword: twelve and a half years after the transplant, Pensack declares, “I continue to be one of the true miracle stories of organ transplantation” (319). The very title of his memoir, too, invokes miracle. The Biblical story of Lazarus is brief, but telling. Four days after Lazarus had been entombed: ‘Jesus shouted, “Lazarus, come out!” And the dead man came out, his hands and feet bound in graveclothes, his face wrapped in a headcloth’ . As healing miracles go, however, the Lazarus story is one that confronts readers with the materiality of death. Fundamentally, the Lazarus story is not transcendent, but immanent; unlike the Ascension story of Jesus’s mother Mary, for example, Lazarus stays very much on the earth, with a vivid memory of death.Similarly, while at first glance Pensack invokes the story to frame transplantation as miracle, closer scrutiny shows his own resurrection as entangled with degradation and weary, ongoing struggle. Both Pensack and McCann embrace the ambiguity of the Lazarus figure. Pensack unflinchingly shows the devastation attendant on recovery from the surgery—“I should be dead and the body knows this”—and after the intensity of surgical aftermath, daily maintenance requires effort: “to perform simple tasks without the preoccupation of this invisible illness haunting every motion is gone forever…… I am not all better now as everyone, myself included, would like to believe” (308). The chronic everyday incurs the language of haunting, and he is continually vividly aware of the closeness of death in ways that many other people have the luxury of forgetting. Lazarus, too, emerged still in his graveclothes. Pensack’s memoir ultimately invokes the temporality of ‘miracle’ not in order to convey the heroic moment of transplantation surgery, but to convey the ‘shattering nature of recovery’ (273), the difficulty of enduring the aftermath of miracle. The Lazarus figure conveys both the glory of medical agents—with whom Pensack himself identifies—as well as the decaying, vulnerable subject who is raised but still wrapped in the cloths of death.as ‘the story of a liver transplant’:McCann’s essay is also a story of successful transplant, in his case a liver transfer in response to hepatitis. He is aware of the astonishing feat that surgeons have wrought for him: “The liver of a dead person was placed inside me so I might live again” (101). The transplantation is successful, but McCann shuns the idea of writing a triumphant story. In interview, he says that he never wanted to write about his experience It’s never been a medical adventure to me. To write the story that way, to me, would be as appalling as writing a case history …. The basic narrative of transplantation—what people believe—is: you are sick, you get an organ by the grace of God or whatever, and now you’re well. But transplantation is not a restoration narrative. It’s not a narrative of a break and then a resumption. Your narrative is altered, utterly, from the experience. You go on immunosuppressive drugs, which are highly toxic, for the rest of your life. You trade in your imminent death for—as time goes on—a series of simultaneously more manageable and more life-threatening conditions. 117To avoid the too-neat story, McCann shows time as non-linear even before surgery. He overhears a nurse saying that many teenage donors die from suicide, and McCann is shaken by that knowledge. He lies down in a park to distract himself:sunny, sunny …. But it didn't work. My donor had begun to claim me, or so it seemed; I felt as if he'd somehow been constructing himself inside me without my knowledge as I was dying, though he was [sic] still alive and waiting for nothing unforeseen. what did Lazarus want after he stumbled from the cave, tied hand and foot with grave clothes, his face bound about with a napkin… I want to complete what I’ve written here—these fragments, these sticky residues of trauma—by adding just one more line before the words What happens is effort, routine, anticipation and dread. In McCann’s memoir, as in Pensack’s, the primary function of the Lazarus metaphor is to convey the extreme effort that must follow resurrection:Each morning and evening I monitor myself for organ rejection, as I’ll do for the rest of my life: blood pressure, temperature, weight. I go to the clinic for blood draws; I await faxes detailing test results.Here is what happens after the resurrection:Your body hurts, because it’s hard to come to life again after lying so long in a grave, but you set goals and you labour to meet them …. You learn your medications, you learn to pack your wounds with sterile gauze; you learn to piss into a bottle and shit into a pan. It’s work, preparing yourself for sunlight. (109)This work is not done alone. In addition to using the Lazarus trope to convey the labour of after-the-miracle, both Pensack and McCann show touching, sad and awkward socialities, and show the ongoing waiting as occurring alongside an abiding, intense awareness of death. These elements, too, are part of the Lazarus story. The Biblical story offers two details of Lazarus’s aftermath: he returns wrapped in graveclothes, and returns to his relatives’ arms. After experiencing both glorious miracle and squalid decay, he remains embodied and closely enmeshed in relationships with other people. Both Pensack’s and McCann’s texts, too, show sociality in the aftermath of miracle, and both also show that ongoing life as inextricably entangled with consciousness of death.for, and as Laura Salisbury has shown, can readily become a waiting with—both prepositions show the waiter situated within relationship with others . In this regard, Pensack talks about his relationship with his wife, children, colleagues and friends, as well as other heart patients he meets and supports through their own medical experiences. As he waits for cardiac surgery with others also enduring the same condition, they share ‘war stories’: ‘There is no need for shame or fear, only the quiet satisfaction of camaraderie, the brand-new sense of recognizing yourself in others’ (107). Both Pensack and McCann also handle changes in relationships with loved ones affected by their own deterioration and surgeries. Most poignantly, both texts come to terms with the impossible-yet-vivid sociality of their relationship with the deceased donor, feeling guilt and tenderness about the tissue taken into themselves. This, too, is reported with oddities of time. Pensack dreams of being at a traffic accident where the donor died: “As I move toward the scene tears gush over my cheeks” (301). A police officer at the scene becomes suspicious that Pensack was responsible for the crash. When he wakes, he feels strange, the dream ‘haunt[ing] the day like the presence of a friendly ghost. There is an air that something is about to happen’ (301). Soon, he discovers that his wife had a dream simultaneously in which she and he were on trial for murdering the donor. The sharing of the dreams triggers a release, a rush of sadness, grief and love. McCann, in turn, touches his own body at night with guilt, grief and kindness:Although the image of ‘waiting’ might connote a solitary, lonely figure, waiting is fundamentally a social practice. Ghassan Hage observes that ‘Waiting indicates that we are engaged in, and have expectations from, life’ (2009). Waiting is a waiting I placed my hand over what seemed to be still her liver, not mine, and slowly massaged the right side of my body—a broken reliquary with a piece of flesh inside—all the way from my hip to the bottom of my rib cage. “It’s okay, it’s okay”, I whispered over and over, as if I were attempting to quiet a troubled spirit not my own. (106)Dear donor, forgive me, I can’t save your life)” (107). As mentioned earlier, scholarship on queer temporality has long reiterated the value of complex, difficult and impossible figurations of connection with the dead . McCann admits, “you can’t forget how it felt to lie in the close darkness of that grave; you can't forget the acrid smell of the earth or the stink of the mouldering grave clothes …. The gift of life is saturated with the gift of death” (109). Both Pensack and McCann use the Lazarus myth to convey the profound sense of death now inhabiting awareness of life.eschaton of the end times with the immanence of ongoing life: Lazarus stays on the human plane. The story is eschatological without transcendence. Figurations which can combine the exalted temporality of miraculous moment, and the ambiguous, even squalid duration of aftermath, are worth excavating: they may help meet the representational challenges of transplant time.Both memoirs, then, use the story of Lazarus as a structuring trope, to entangle two different temporalities across one image: the miraculous intervention moment of Lazarus being raised/the intervention of the transplant surgeon, and the grinding, bewildering duration of aftermath, of chronic illness and ongoing management. When used in a religious context, the Lazarus story can be seen as combining both the but something much closer to an ordinary fatigue’ (This discussion has sought to resist reducing the ‘reality’ of post-transplant experience to either single healing event or bleak extended duration. Within these two memoirs, the figure of Lazarus comes to serve, in different ways, to entangle these two kinds of time. Alongside this image, I wish to invoke another concept from affect theory, which speaks to the productive ambiguity of these states: Sianne Ngai’s notion of ‘stuplimity’. Blending stupid and sublime, the coinage conveys ‘the experience of boredom increasingly intertwined with contemporary experiences of aesthetic awe …. [T]he initial experience of being aesthetically overwhelmed involv[ing] … not terror or pain … In that spirit, the waiting of these texts has three dimensions, and it is possible that this commentary may be of value, too, in approaching some other memoirs of heroic medicine. The waiting in these memoirs occurs within non-curative time, and the corollary of this is that waiting is effort, often exhausting, a long-term labour. It is social, a waiting-with others. Finally, it is informed by an awareness of death: not only is death part of the waiting 'for', but death also infuses all other aspects of experience. In all these ways, such waiting connects with crip and queer efforts to recognise the validity of unexpected, sideways, rogue ways of approaching time beyond linear progress arc. This article has suggested that there is value in finding additional literary figures and narrative devices that can express such paradox, and critical practices which can describe the multilayering of narrative arcs and hidden temporalities. Such multiple times may be represented simultaneously through condensed symbolic figuration. The Lazarus image in these works blends the image of miraculous surgery with the language of chronicity, toil and the unhealable. I am reaching for a critical practice to recognise subtle entanglements of medicalised time, ways they may meet on a page and even within a single figure: a figure waiting, a figure strange, living on with others and living on with death.