- Tags:: #📚Books , [[memoir|Memoir]], [[happiness|Happiness]] - Author:: [[karen-duffy|Karen Duffy]] - Genre:: [[memoir|Memoir]] - Liked:: 6 - Link:: https://www.amazon.es/Model-Patient-Life-Incurable-Wise-Ass/dp/B000C4SYES - Source date:: [[2001-11-13]] - Finished date:: [[2026-03-07]] - Added to vault date:: [[2024-11-01]] - ISBN:: ‎978-0060957278 - Cover:: ![[IMG_4962.jpeg|100]] ## Why did I want to read it? El último [[¡Qué pena de morirse!|Memento mori]] me ha demostrado que yo, por pocos arrepentimientos que tenga en la vida, no estoy nada equipado para lidiar con la enfermedad, el dolor, el miedo y la muerte. Esta biografía de alguien que enferma de algo grave en el momento en que lo tiene todo, y sin embargo, parece que lo vive con humor, espero que me de algo. ## What did I get out of it? Ella es la típica tía buenorra enrollá de la MTV americana de los 90. Cuando su carrera está despegando, le descubren sarcoidosis (una enfermedad inflamatoria sistémica autoinmune), que se la puede llevar al otro barrio en cualquier momento, tumbarla en la cama en episodios... Curiosamente, ella se graduó antes de enfermar en "recreational therapy" y tenía bastante experiencia dd voluntariado con gente mayor, discapacitados... Me pregunto si eso le facilitó aceptar su situación después. > Did I mention I was with George Clooney when I first got sick? (p. 2) >When my mystery illness first had me in its iron grip, focusing on myself was too depressing. It was like I'd lost the playbook to my life. I had no idea what to do. So I turned all my attention instead to Frank Sinatra, the man who always seemed so self-assured and knew what to do in every situation. His outsize personality helped me to not dwell on the fact that I felt I was **turning into a nonperson**. (p. 61) > When I had energy, I tried to use it. To get the most out of whatever mobility and ability I had, I learned to practice time management. (p. 67) >I made a conscious decision that since I had no choice about being bedridden, Id just have to like it. I wanted to be at home in my body, at home with my disease. After all, I thought, how many more times in my life will I have the opportunity to be this uncomfortable? (p. 67) > To give myself something to look forward to, I pestered my doctors for things to make my time in bed more pleasant. (p. 68) > A lot of my current treatment is what's now called "pain management," which is a euphemistic way of saying that without heavy drugs, I'd be in a lot of pain. (p. 177) > ...the only thing that really works is to keep myself busy and distracted so I don't spend time focusing on the pain.(p. 177) > the best thing that came from lying in bed all the time was that I started to write. (p. 68) > I decided to fill my here and now with as much fun as possible, just like when I was a kid. And for that, I needed my friends. I didn't want someone to come over and clean my house or hold my hand while I wept helplessly. I just wanted some diversion, and my friends were happy to provide it. So I started throwing parties every Friday to mark the weekly "anniversaries" of being sick. I thought, I have to eat dinner anyway, I might as well have friends over to keep me company. (p. 79) > ...the friends who were most supportive when things were at the worst tended to be the sickest ones themselves—mentally, anyway. (p. 82) > I'd socialize with the nurses and interns on the floor, trying to entertain them, like I was auditioning. I was used to being popu-lar, but I poured on the charm as if I was campaigning for Miss Congeniality. For some stupid reason, I thought Id increase my chances of survival if the staff liked me. (p. 91) Acerca de la alienación del dolor ([[¡Qué pena de morirse!]]), esto que escribe su marido John Lambros: > also didn't say, "I love you ... were in this together." We're not in it together. She's fighting it, and I'm helping her fight it, but I'm not sick. I can't imagine how sick she is. Were in it together in the sense that were a couple, but my role is to help her live the nonsick part of her life. (p. 157) Y el mundo sigue... > ... no one in this world is making any concession to my illness. (p. 214) > I'd gotten used to the perks of being attractive without even knowing it, and it was a rude shock to realize people weren't so nice to me now that I looked like a hag. (p. 225) > But one of the liberating things about life-threatening illness is that if things got much worse you'd be dead. I was already bumping against the bottom, and I realized that the opinions and judgments of other people made no difference to me. Letting go of other people's standards freed me to feel good about myself and my looks on my terms. (p. 227) > I won't go into any gory details, but I will say that the sense of imminent death can heighten the experience of intimacy. (p. 230) Qué mal llevamos que las cosas pasen random y no haya nada que aprender: > Duff is utterly contemptuous of people who tell her, "This is going to make you a stronger person," or, "Think of all the good things that come out of being sick," and that attitude is something that I latched onto from the very beginning. There's nothing good that comes out of being sick. (p. 161) > ...for the idea that I brought my illness on myself, why on earth would I do that when I was at the top of my game and loving life? I understand why these notions are comforting. It's easier to distance yourself from the fear of sickness if you subconsciously believe that I or any sick person somehow brought their illnesses on themselves, and that it's possible to avoid making those same mistakes. (p. 184) Por muchas vueltas que des, no hay Dios que esté preparado para esto: >I got jobs, I went on dates, but nothing was as satisfying or exciting as it had been before I got sick. Despite my attempts to conceal its manifestations and overcome its limitations, **somehow the sarcoidosis seemed to color everything I did a dull shade of gray.** (...) My life and my career were like this sleek jet that I'd built, and just when I was ready to take off I had to put it back in the hanger and redirect my energies. Like maybe l'd need to build a bicycle instead. And I hate to exercise. **I often wondered, Do I have a future? Sometimes, I was sure the answer was no. So I'd just try to outlive the milk in my refrigerator.** (p. 203-204) > I wasn't so much afraid of death as afraid of what living with disease might do to me. (p. 206) > Finally, **I don't think you ever accept being sick, but there's a kind of Stockholm Syndrome that sets in.** (...) Sarcoidosis has become so much a part of my life and identity that it makes me a little nervous to contemplate what I'd do without it. (...) I want to get better, but I'm so used to being sick, and now that I've finally found a way to deal with it, I might as well be sick. **Getting better could be as much of a radical adjustment as getting sick in the first place**, and there's already been enough turmoil in my life. Maybe that sounds strange, but **I think I had to get comfortable with sarcoidosis before I could really live with it, as opposed to just suffer from it.** Once I'd come to terms with my illness, I got past mourning the person I had been and I was able to figure out who I'd become. (p. 206-207) [[Somos aquello a lo que atendemos]]: > I came across this little gem: "You become what you think about the most." (...) Accepting that I had a debilitating illness wasn't the same as realizing I was still a vital person with a lot of life left. (p. 211) > I was living with illness, but I wasn't living beyond it. (...) I'd thought of myself as a model and actress and correspondent, and that's what I'd become. When sarcoidosis knocked those out of my life, I only had my illness to think about, and being sick became my whole identity. And when your horizons are limited by disease, it's a sad and boring world (...) **I'm like a person with a long commute to a great job—I focus on the job, not the commute.** (p. 212) ### Other notes Literalmente mi familia: >Once when I returned home from my overheated college dorm, I said, teeth chattering, "Here's twenty bucks, Mom, why don't you turn up the heat." (p. 14) Amiga de [[Harvey Weinstein]]... lo menciona constantemente en el libro XD.