Blockchain Papers

Melissa Lauer

I learned about Camille Claudel in an art history lecture hall—a hundred undergraduates chipping away at another gen ed, our harried professor miniaturized by the looming screen behind her. She whipped through the images too quickly for much to register, charging through most of human history in 50-minute bursts. There wasn't time to think, just frantic notes and the TAs’ habitual promise that they'd upload the PowerPoints before the exam. So I was not particularly captivated when we ran through Claudel's sculptures—the bust of a boy, a girl collapsed at the feet of her lover, an ancient woman thinned by age and entangled in ropes of her own hair. I logged the biographical details—Claudel's artistic period was brief and tumultuous, entwined with that of Auguste Rodin, a much older and more famous sculptor who served as her mentor, lover, and rival. She struggled to extricate her own art from Rodin's shadow, then destroyed most of her work before being involuntarily committed to a mental institution. Then we moved on. She wasn't on the test.Still, I remembered one of the figures. The old woman with the horrible hair, how she struggled underneath it. The roughness of the plaster from which she is cast makes her skin sharp, studded, the lines of her ribs painful through thin skin. The sculpture is titled Clotho for the youngest Fate of Greek mythology, the one who spins the thread of life. But in Claudel's version, she isn't mythic. She is haggard, bent, confrontational in her brokenness. I can't get her out of my head.My older sister and I share a condition, a genetic abnormality called hypermobile Ehlers-Danlos syndrome. EDS has many symptoms, and many complications, but its hallmarks are weak, overly mobile joints, chronic pain, and pernicious fatigue. I experience the latter—days when exhaustion crouches on my chest, so heavy it's hard to breathe. I have had pain, too, but mine is neither severe nor constant enough to be chronic. If I walk a few miles, my knees will ache. My shoulders and neck tighten regularly, my hands grow sore, I sleep on my side with a pillow rolled between my knees because without it, I feel my joints sinking too far in, my hip and shoulder dragging themselves down to the mattress into uncontrolled collapse. But most days, most of the time, I do not feel any baseline pain. My sister does. She has been in pain every day since her headaches began in 2009, when I was twelve and she sixteen. EDS describes the shared defect in our collagen—the protein that cushions our joints and helps restrict their movement to a reasonable range—but its effects do not manifest the same. We are both hyperflexible, our elbows flipping easily into reverse, our knees locking when we stand, our ankles giving out unpredictably. But the insides of her joints tear. The ligaments that hold the top of her spine together are faulty, too loose to stabilize her head, and an errant disc in her neck presses sharp bone into her nerves. Her hands and wrists hurt so badly she can't draw, can't hold a book, can't write by hand. She is twenty-nine, and she has depended on a walker or a cane for the past three years—still, the heavy door to her apartment building swings closed automatically. She requires assistance just to leave.My sister used to be able to enter and exit her building. She could even hold things—a bag of groceries, her cat in a carrier—while maneuvering through the three doors between inside and out. After her second hip surgery, an attempt to mend the shredded labrum, she could not. Her hands were occupied with the walker, balance imperative, and the doors swung shut too quickly: even if she managed to balance, freeing a hand with which to fling one open, then to move quickly enough to wedge herself and the walker into the threshold, she could never be fast enough to make it through before the door came slamming back. If any one of the three doors struck her, she feared she would fall. Independent of that worry, the process was too long, too painful. There would never be energy enough to risk it.Now, months past this surgery, she still does not exit alone, although she sometimes could. Every time, someone walks her in and out. The routine is established, and she hasn't taken it back, hasn't altered the requirement for an escort from always to when I ask. When you are deeply vulnerable, sometimes you have to act like it.I was probably thirteen, which means my sister was seventeen, and our parents were out. We were alone with a list of chores to finish by end of day, and she still had the same migraine that had shaped her life for almost two years. Probably, she hadn't dropped out of high school yet, but that was coming within the year. Certainly, I didn't believe she could possibly be in that much pain. I didn't feel lucky that I'd never had a headache; I just resented hers. I could only imagine it, and most of the time I didn't want to. Before the headache, she used to cajole me into taking over her most loathed chores, irresistible big sister manipulation: Scooping the litter boxes is great Melissa! It's like archaeology!; You have to be the one to change the guinea pig's water—he likes it better when you do it!; If you clean the toilet, I'll read your future in the shapes the bubbles make in the bowl! Now, though, it was no longer magical—there was no wheedling, no game to letting her convince me. I must help her now because her head always hurt, she was tired. The smell of the cleaning fluid, the throb of bending over, the drag of the vacuum pulling on her shoulders was all so much worse for her than for me. I owed her this. I hated it.This day, however, she was still on the chore list, expected to perform her own lineup of tasks. We were supposed to move the area rug in the family room, get it repositioned correctly under the cabinet and loveseats. We would have to work together because the furniture was too heavy for either one of us to lift it up and pull the rug underneath at once. But she was again complaining of pain, always exhausted, and I was frustrated. We bickered over who would tug on the rug, who would lift up the furniture, and I took the lifting role because she didn't want it. I was twiggy and weak, and I raised the cabinet off the floorboards but it weighed a ton, cut into my hands, and she was too slow with the rug. I lost my grip and the heavy wooden leg slammed back down a breath away from her fingers, and she yelped as though I'd crushed her anyway, accusatory, and I snapped something back that I'll never remember. She called me a dick and I could tell she was almost crying already, and she stormed away to go lie in the dark again: all she ever seemed to do. It was barely an insult, but it was also the first time she'd ever cursed at me. I felt it like a lingering electric shock, sharp and stinging and unexpected. I couldn't fix the rug on my own, so I left it there too, perfectly smooth up until the massive wrinkle abutting the cabinet. If she was going to call me a dick, I was not going to care that she was crying. The crumpled rug would be proof of her failure; when our parents got back, I'd make sure all my own chores were finished.It would be years before it occurred to me that she snapped at me because of her pain. At the time, she didn't say so.I search for the sculpture of Clotho many times before I am able to remember its title, before Camille Claudel's name finally sticks in my head. I try greek fate sculpture 1900s; french woman sculptor mental breakdown; sculpture of old woman buried in own hair. When the image comes up, I stare. My eyes trace her hair's strangely animate lines, fix on the crook behind her inward-turned knee, bounce down the stair-steps of her sternum. It takes me days to notice her raised right arm, bent to support her head, the hand invisible beneath her hair.Looking at her, why do I think she's in pain? How do I know? She's old, yes, and cadaverously thin. Her hair looks like it's trying to strangle her, or maybe hold her down. It's as alive as she is, tentacles writhing over her face, around her arms, curling unnaturally around fragile, gnarled limbs. Her neck is twisted awkwardly to the right. Her extended free wrist is limp beneath more heavy chunks of hair, gesturing in something like surrender, or maybe imploration. It doesn't quite look like she's oblivious to her own display, nor like she's posing either. It may be the boldness of her body, its unflinching exposure. This is not a proud woman, but a wounded one trying to be seen. Sometimes, as I stare at her, all I can think is how desperately she needs someone to help her cut her hair.I can't imagine a situation in which I'd want the help my sister asks for—that reality is too far away from me, for now. But I can't say she wants it, either. I tell her of my plans to travel—a move to graduate school across the country, a trip to see my friend abroad—and to her it is reconfirmation of her own losses, possibilities she doesn't have and believes she never will. Both of us grieve for the options she lost, but I am not my sister: I do not cry where anyone can see it. I treasure my privacy, my control over who has access to me and my needs. She is open in a way I will never be, her pain—physical and emotional—always right at the surface, demanding acknowledgment, comfort, support. Her suffering creates a world in which I must apologize for overestimating her ability, though it's always in flux, because it hurts her to be reminded of what she can't do. And my perception is a threat to her, too.Doubt is a part of pain, internal and external. It's a straightforward medical dictum: Pain is “whatever the experiencing person says it is, existing whenever and wherever the person says it does.”1 Medical students have learned this clean-cut statement since the 1970s: Just believe. Yet even now, with all her diagnoses gathered over the years of her growing disability, doctors still question the reality of my sister's suffering, insinuate uncertainties that crawl into her head, and into mine. She wonders, while hurting, if she could be making it up. I witness, and still wonder if it's really quite that bad.It's not surprising that with my lesser symptoms, the worst pain I've experienced had no connection to EDS.I was newly twenty-two, and all I could do was lie in bed and cry, because the pain of my swollen throat was too horrible for anything else. It was no longer just that I couldn't swallow without searing, stabbing, broken-glass pain, or even that I couldn't talk—now, the pain was there always, unavoidable whenever I was conscious. Over and over, I walked down the hall to the bathroom mirror, opened my mouth, and tried to see if my throat was bleeding. And I cried. Could I stop? The tears didn't help the pain in my throat—they made it worse. Salt and mucus on delicate, inflamed membranes. Coughing that wrenched through everything. My eyes would have hurt and itched from it, if I could have noticed them behind the angry, consciousness-commanding wail of my throat. I lay alone, but as I cried, I wanted someone to find me and see how much I must be hurting. I wanted to be helped.I went to the walk-in clinic three times. On each visit, they tested for strep, and each time the test was negative. Once, inexplicably, they insisted on cleaning out my ears, and I sat on the table for another twenty minutes while a middle-aged woman with dyed-red hair wielded a Q-tip and an irrigator.Part of communicating pain is justifying it, trying to prove it really happened. Eventually, I received positive tests for mono and CMV, common viruses that both can cause sore throats. It's simple, undramatic. I was sick with both simultaneously, and they inflamed my upper throat so badly that by my fourth trip to the clinic I was told to monitor my airway in case the swelling progressed to the point that it infringed on my ability to breathe. They prescribed hydrocodone, and it did nothing; it's the steroid I remember as a godsend, because it finally stopped the swelling. Only that began to help the pain.I felt pain to the point that it became the center of my world, so it is imperative that I tell you I was sick, diagnosed, told to watch my airway. I have to show you it was real. When I could not prove it with a diagnosis, I proved it by curling in bed alone, by crying to myself in a way I hadn't since before I could remember—wanting to be seen. I stared into my throat, reflected in the mirror, to show myself it really was swollen, the opening virulently red, shrinking day by day, and hurting me. There is satisfaction in seeing without doubt the thing that is harming you, even when all you can do is know it's really there.I try to find out more about Clotho, but the papers are scattered and opinions disparate: She symbolizes Camille's fear of aging and the loss of beauty, she is a meditation on how society treats elderly women, she is a warped and evil creature indirectly responsible for death. She is destiny trapped within itself, tangled in the thready net of her own hair. She could be all of these things or none, but to me she is a person hurting, a person alone.It's the sculpture that reels me back in to Camille again. I'm not interested in the drama of her young adulthood—her affair or her paranoia. The piece of her life I can't ignore, the one I keep seeking, buried beneath the romance and tragedy, is her little brother Paul. He is instrumental, but also on the fringes, never quite coming clear in the articles written about her. When their parents sent Paul to Paris for an education, Camille engineered her father's support against her mother's disapproval and made the journey with him. She pursued her art professionally while, in time, Paul became a poet and a diplomat. They inspired each other. He supported her sculpting—despite a devout Catholicism that bordered on the fanatic, he did not withdraw from her scandalous artist's life. She wrote to him of her life, her work, and his poetry. They led separate lives, but grew together.In the early days, she sculpted him. It's his face that I forgot, the unremarkable brass bust of a boy looking sideways. He's thirteen to Camille's seventeen at the time of the sculpting, but looks younger, his cheeks round and soft beneath the large domed skull of a much smaller child. This bust of him is not her last. As long as she made art, she sculpted Clotho, no one can on Paul was the one from the one who her from to her while she was free and her when she was in the the one who never her there is on who to it was her mother's or or both But it is the was against Camille's that Paul the papers that her. also that he left her there for the of her when a It the drama back. a to make My sister has to move so I'll my up her her her She has another surgery, so I'll on the mattress and every few to keep her on She is desperately so I'll all her with me and a few times a out no more than three of at a time, into separate and But twelve years in, these of are and it's hard for the to feel like the with the the Her is going through constant of pain that her to to And it it helps to it, I tell because it's The thing is not the that into not the mental of symptoms, and side effects from prescribed by doctors who read each It is the of too and the of not the and the it her family her, Camille was her and a of his were on her she destroyed her own her began to fear she would from Her brother sent her while she struggled to support They Both of their until the of their times in the years she in the and he her there even doctors her to I can't tell if he her I can't know what him My to know me, as I wonder what balance of care and out in his as he the of his sister's life. He's as her most called her work a of of and he to her But also for Camille's art, for his own her for to see the and she My sister he years her had an beauty, an an a quite these came to an painful life, it in is where the then articles about her just a few lines she to be she never made art she in at the age of came that did not her maybe worse than of taking her will never be enough to it all with But I'm not there wasn't I see it in that that is taken as his of her she came to me, that like like at what she never got to he to away from her. So it is a who a sister he and and It me to see anything in him that I want to and I wonder if where doubt can sister does not want me to her I believe we could find a way for her to her building by could at try that the apartment door But to say so is out the of her the that my sister's body, the the the spine and the the the walker that makes our in of still as if even we who her can her reality with our say it, and I her is real. But that doesn't it isn't also more than when in so much a fear of being left My sister needs help to She must her the image of in to feel If you too the if never left After her second hip surgery, almost a when we have not left her alone for more than a few for the first two even while she she still me, If I'm able to get up by I'm in on trying to my of her I at her to the of plaster that her, the and of her But I look at her face, and I am no longer She isn't Her is her neck but her eyes are and They are neither with pain nor and I watch her as if their will away a a a that her of my eyes on her. But her is closed and she will never tell I look for long it to me that I may not anything at

Matthew S. Murphy, Alberto Fernápndez, Antonio Daponte

the death of General Francisco Franco on 20th November 1975 and the subsequent transition to democracy was a seminal moment in Spanish history, laying the groundwork for important administrative and institutional changes. one of the most important changes during this time period was the establishment of a right to health care in the Constitution of 1978. previously, the Spanish health system had granted access based on employment status, with financing via payroll taxes managed by the Social Security Administration. With the passage of the Constitution of 1978 and subsequently the General Health Law of 1986, Spain developed a national health system which guaranteed universal access to the population and was financed through general taxation. At the same time, the country began to move away from a strongly centralized administration through a devolution process which granted administrative responsibility for governing areas such as education and health to the 17 autonomous communities of Spain. the process began with Cataluna in 1981, followed several years later by Andalucia and was completed in 2002.Both of these elements are essential to understanding the role and organization of the country's public health workforce. the universal nature of the Spanish health care system is regarded as the most significant guarantor of the country's health and wellbeing. At the same time, the central government has a very limited role in the management and organization of the health system. in fact, during the process of devolution, the field of public health was the first administrative element that was turned over to the autonomous communities. As it involved limited financial resources and infrastructure at the time, it was viewed as easily transferable. However, the government has struggled since then to organize and coordinate public health initiatives between the different autonomous communities. the principal coordination mechanism for health- related issues is a body called the Consejo Interterritorial de Salud where the 17 health ministers from the different communities as well as national professional groups meet with the national Minister of Health. Here, they plan the response to disease outbreaks or discuss the effects of new legislation on regional health systems. one of their major initiatives now is standardizing national preventive programs such as population screening procedures and the paediatric vaccine calendar in response to important intercommunal variations in initiatives and resources. ultimately, the Consejo has little legal authority and acts more as a facilitator for collaboration than a regulatory agency.As a result of the decentralization of the administration of health services and the early devolution of the responsibility to ensure public health reaches the autonomous communities, it is difficult to discuss a national public health workforce. there are no national databases or registries of the public health workforce in Spain. each community has developed its workforce based on its history, political philosophy and perceived health needs. Additionally, there is no national accrediting body for public health professionals in Spain, something that is essential for professional regulation and political importance in the workplace. However, there are important professional associations at the national and regional level that fall under the umbrella group SeSpAS, or the Spanish Society of public Health and Health Administration. these associations include groups such as the Spanish Network of primary Healthcare, the Spanish Association of epidemiology and the Spanish Society of environmental Health among others.the national government does play a central role in insuring compliance with european legislation and regulations, particularly in areas of occupational health, environmental health and food safety. As a result, the public health workforce is organized around these areas and usually includes a diverse set of professional profiles. …