- http://www.thedivingbellandthebutterfly-themovie.com/
- http://en.wikipedia.org/wiki/The_Diving_Bell_and_the_Butterfly
- http://www.salon.com/2008/02/23/diving_bell_2/
Sunday, January 24, 2016
Reactions to The Diving Bell & The Butterfly (by 25 & 27 Jan)
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I genuinely enjoyed this film, I was a little thrown off in the beginning by the different language and having to read the subtitles but I adjusted quickly. I can’t think of any questions that I have related to the film. My favorite scene would have to be the one where he is helping his father shave. Probably the biggest lesson I took away from the film would be to say what you need to say to your loved ones, before it’s too late. Never take anything for granted and cherish every minute of life. It surprised me to see what a great attitude Jean-Dominique Bauby has despite his circumstances. He continues to crack jokes and ultimately finish his book. Very inspirational that’s for sure. The whole movie was a little sad to me, but I’d say the saddest part was the conversation over the phone with his father. Very heartbreaking to see his father cry.
ReplyDeleteI can see where you think that the saddest part of the conversation was with his father. Definitely heartbreaking for sure. But I feel that we agree on that he has a great attitude given his circumstances from his CVA.
DeleteI thin I had planned for it to feel as sad to me as it did you, Erin. However, as it proceeded and he chose to "quit pitying" himself and he began to play on his strengths and expand his life based upon those, I found myself inspired. The heaviness of my heart lifted and I was able to bask in those little achievements with him and even think about it in the context of my much tinier hurdles I have faced.
DeleteThe scene with his father definitely got to me, having lost my dad unexpectedly two years ago, it makes you cherish those relationships. Shelley, yes when he decided he was going to "quit pitying" himself I was also inspired.
DeleteI was initially hesitant to watch this film as I anticipated great sadness. At the beginning of the film, with his distorted vision cast upon the viewers via filming technique, followed by the revealed knowledge that this was accompanied not only by aphasia, but also paralysis from head to toe, I felt very anxious. I found myself feeling trapped, and almost claustrophobic and hyperventilatory. This hit especially hard when they sewed is eye shut despite his unheard begging to not. However, as he learned to communicate and to cope with this, his view opened more, and I felt less panicked and was able to enjoy the film.
ReplyDeleteMy question throughout the entire film, was about details of the events surrounding his CVA. I was relieved when they were revealed to us at the end. I also wanted more information about the circumstances in which he left Celine. Beyond that, my biggest question is about the storekeeper in Lourdes whom they bought the Madonna from. Jean-Ro seemed very taken with the familiarity of the storekeeper and if they had met before. I want to know this connection. I referenced back through the film, and was unable to find a suitable answer.
I was most saddened by the scene at the beach on Father's Day, the obvious effect his illness had on his son, his son wiping the drool from his drawn, paralyzed face then having to be comforted by his mother. When he went on to elaborate more on his sadness that he could never touch his children's hair again, never hold them and feel their bodies close to his, it truly broke my heart. As a mother, I cannot imagine life without holding my children. This also reminded me of a geriatric article I once read about how the elderly in nursing homes, often widowed, craved touch, as true loving touch was part of human interaction taken in the later years of your life once they no longer had romantic partners and once heir children were grown.
My favorite scene was when Claude took him out on the boat for the change in scenery. She casually had her head laying on his shoulder, as if they were in a normal, fully functional relationship of some type. Her acceptance of him as he was, her true feelings for him revealed in her body language, her kindness and lovingness with him. Then when she presented him with The Count of Monte Cristo and for the first time he showed true happiness, like he was finally really living again. He had quit wishing for death, and was making plans for their next book.
I don't recall any great surprises. I was somewhat surprised his CVA occurred when his son was with him.
I've taken from this film just how valuable the moment you are currently living in is. You cannot push things out planning for later; you cannot treat people poorly thinking you can make up for them some day. You have to make life count at that moment, touch those lives around you, leave nothing unspoken. However, the strongest thing I took from it was how utterly helpless and dependent our patients can be upon us. They can be trapped without a voice or movement, and the words and actions we choose can comfort them or make it a horrible frightening experience for them.
I agree with you Shelley. Our patients are helpless and dependent on us sometimes. It made me feel like I need to work harder at helping them be able to communicate in another way. However, the majority of my patients are sedated but their are some that I do feel the need want to express things and cannot and just look at me so frightened and sad. It is hard for me to see patients this way and I do comfort them but it makes me think about my everyday nursing practice and if there is something more that I could do for my patients.
DeleteShelley your description of your feelings in the beginning of the movie are spot on! I find it amazing that in a movie we can put our selves in the shoes of an actor but find it harder in our own patients lives.
DeleteYou're so right, Jessica! I think it's good to watch these so we can have that empathy view and can apply that to touch one life.
DeleteFirst off I did not like that the film was in subtitles and a different language, however I as well did adjust quickly. I think my favorite scene from the movie was when the speech therapist, Henriette after working with him developing a new way for him to communicate with blinking the left eye he still has control over when she goes through the alphabet and spells out the word, and he decides that he wants to continue writing. His previous job before his CVA was a Magazine editor. I think that this whole story is based off of Jean-Bauby book which he dictated one letter at a time through his translator, Claude. Claude also has so many patience with Bauby, and you can tell she really has a good heart and wants to help.
ReplyDeleteI think that the saddest thing for me was finding out in the beginning that he had what we call locked-in syndrome. I mean putting myself in that place in those shoes not being able to communicate with anyone normally and people don't all have patience like Claude, and I would get very frustrated. But on the other hand this also was a happy part for me because Bauby didn't give up worked hard past his frustrations and that really was great of the story. But it definitely make you think about is this quality of life. A whole different topic, and him knowing how things were before and then being stuck like this forever must be beyond difficult and I am sure that Bauby and or anyone who has had a CVA with this locked in syndrome or any severe deficits from a CVA think to themselves daily, is this any way to live?
I do not recall any surprises during this film.
I think the main thing that I really took from this film is no matter what you can push past your frustrations your bad days because he did what he didn't think that he would be able to do again. I really think that you can honestly do anything that you put your mind. Our greatest obstacles is our own mind telling us we can't. Once we try and succeed, yes there will be bad days, but you will get to the finish line one way or the other. Any obstacle is impossible if you put your mind to it. Just like Bauby, he did not give up and found another way around how to communicate when losing communication due to a medical reasoning.
Also, I really relate this to my everyday care, even though I have patients that are sometimes in this type of state, I feel like I need to try harder as a nurse to really help them find ways to communicate if they are unable to communicate normally. Really take the time to help. I feel like other nurses and I could help and not make them so dependent on us when in reality when you look at it they are.
I agree completely Kourtney, especially about the "is this any way to live" question. I think in today's health care atmosphere, a huge question early on would be quality of life and should he be forced to live (like when he told Henrietta he wanted death). I think that would have been addressed much earlier in the acute phases, and he might not have gone through the suffering he did before he became at peace with it... Which raises another question: if in today's world, we had rushed to address quality of life and comfort care was instituted, Jean-Do would not have been rehabbed and would not have recovered to the point he did. He would not have had the opportunity to write his book, live on some and see his children play on the beach, relive so many things in his imagination to the point he was able to apply these experiences, meld them, and plan to write more books. By trying to end his suffering early on, we would have extinguished the chance for him to truly live on for that brief time.
DeleteI know in the ER it is easy for us to jump to "quality of life' and discuss non life saving measures. this movie definitely makes me think about the reasons to try harder, to push thru and to go all in every time. Not that we don't always try to saves lives and do all we can, but we can also be quick to count the patient out.
DeleteI agree Kourtney having locked in syndrome in my opinion would be worse than actually dying. He had to feel like a prisoner in his own body.
DeleteDo you think that a typical patient in the U.S. would have gotten the same treatment as Jean-Do? Does the availability of high-quality health care change your opinion on whether or not you could stand to be in locked-in syndrome?
ReplyDeleteTo be completely honest, I do not think the typical (typical being key) US Citizen would have gotten the same treatment as Jean-Do. Jean-Do was the editor of Elle, he had wealth and status. The resources given to his case were remarkable. In my 30 years in health care, I've seen too many patients who were "locked in" from CVA or similar illnesses, some to this extent, some not this severe, but locked-in nonetheless. Rarely, especially after the acute phase, would they get so much attention or such an effort to be certain they continue to be treated with the same consideration and respect as someone who can speak and move for themselves. I've seen many of these people be cared for with little explanation and interaction, healthcare workers going through the motions. They are very often "talked over" as the telephone installers did in this movie, however they usually do not have someone to come to their representation and remind others they are still a person to be communicated with and demand respect of their rights for that. The resources Jean-Do received were abundant, the best care and attention by many. So many "locked-in" I've seen receive the necessary care: attention to bowel and bladder functions, feeding and brief baths only. Every day to them is like his dreaded Sundays: whether it's due to minimum staff, lack of realization of this person trapped inside who needs that mental attention or lack of desire to do above and beyond what is required. Also, if you add the health insurance factor here in the US, a family would have to fight to receive a fraction of the rehab services for a more rehab-able illness here. Insurance would not afford resources like that to such a dismal prognosis.
DeleteI agree the typical patient would not receive this type of treatment. In any type of disease process that was going on. Our patients are limited in their health care due to staffing issues. Even just simple test that could be performed if we had the staff 24/7, such as an echocardiogram, could speed up the process of patient care but due to there limited hours our patients admitted on the weekends could not receive this test until monday and so on and so on. But that is just comparing something simple as a 30 minute test that could be completed and we are talking about something so much more complex such as the "locked in" syndrome. I hate to be honest but nursing today is very task oriented, and yes most of nurses try and get to know their patients and find ways to communicate with them, but there are times that it is just go go go and you don't have that extra 30 minutes to be patient with them and those 30 minutes even 10 minutes could mean the world to them and give them that comfort and care that they need, the interaction the attention to their needs. We just honestly all are at fault and it is due to shortage and the fact that our patient population is just in general becoming sicker.
DeleteOn a different note I think that we also forget that just because they can not communicate with us, that they still can hear us and understand us. These people are still human beings and the things that I hear in rooms with patients is very disturbing among staff. And It is sad, and if one day these patients could talk/communicate again they would be able to tell that these healthcare workers are unprofessional. And yes everyone slips every now and then, no one is perfect, but more often than not I hear things that should not be said and left as thoughts.
I completely agree with Shelly and Kourtney. Not only would it be hard to find the time needed to spend with this type of patient due to budget and staffing issues we face, but how about the amount of patience, commitment, and passion those caregivers demonstrated. That was truly inspiring! I'd love to say that I would dedicate myself to a patient in that manner given the opportunity however, I'm not so sure that I would have the same amount of patience and attentive qualities those caregivers had. It definitely takes a special person.
DeleteThe acute care setting definitely does not offer us the time to care for the patients in this way. I would like to know the care they receive at rehab hospitals like The Drake Center in Cincinnati. I believe in the movie he was at a rehab center because he was moved from the hospital in Paris. Maybe there acute care hospital are more like ours than we think.
DeleteI think Jean-Do probably received his excellent care and attention because of his notoriety as the editor of Elle magazine or maybe the healthcare system in France is that much better than in the US. I'm not sure. I was impressed with the quality of care and attention he received as a patient. They really did a wonderful job with trying to communicate with him on every level of his care.
DeleteI would not want to continue my life with lock down syndrome. I felt sorry for him because he couldn't communicate at the beginning and they were doing procedures to him that was against his wishes.
I absolutely believe that Jean-Do received the most highest available care due to the status and influence he had. His case is so extraordinary, because not only did he receive such excellent care, but because of that, he was able to expound on his own mind's capabilities he already possessed. A typical case of this nature, ones which we see in the nursing world, do not amount to much 'living', and they often die soon after.
DeleteI absolutely believe that Jean-Do received the most highest available care due to the status and influence he had. His case is so extraordinary, because not only did he receive such excellent care, but because of that, he was able to expound on his own mind's capabilities he already possessed. A typical case of this nature, ones which we see in the nursing world, do not amount to much 'living', and they often die soon after.
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ReplyDeleteI must be a bit of a sap because this movie made me cry not just once, but a few times. I have never been a fan of movies with subtitles, but I feel the director did a great job of portraying the emotion of the movie without words. I can't even begin to imagine what it would be like in the beginning to be completely aware of what is happening, but then be unable to communicate your wants, needs, or refusals. The fact that the speech therapist was able to not only establish a way to communicate with Mr. Bauby, but improved what quality of life he did have was rather impressive.
ReplyDeleteThe scene with Mr. Bauby and his father on the telephone was particularly emotional for me. They both really were prisoners in their own rights. Jean-Do in his body, and his father in his mind. Both men sharing in having difficulty communicating. After watching this movie I hugged my son a little tighter and called my mom, ensuring to say I love you before hanging up. She knows me well and asked what sappy movie I had just watched.
One question I do have after watching this movie is would he have continued to improve had he not developed pneumonia? I do not have any experience with "locked in" syndrome. Are there cases such as his that have made improvements with continued therapies? If so, to what extent?
I must be a bit of a sap because this movie made me cry not just once, but a few times. I have never been a fan of movies with subtitles, but I feel the director did a great job of portraying the emotion of the movie without words. I can't even begin to imagine what it would be like in the beginning to be completely aware of what is happening, but then be unable to communicate your wants, needs, or refusals. The fact that the speech therapist was able to not only establish a way to communicate with Mr. Bauby, but improved what quality of life he did have was rather impressive.
ReplyDeleteThe scene with Mr. Bauby and his father on the telephone was particularly emotional for me. They both really were prisoners in their own rights. Jean-Do in his body, and his father in his mind. Both men sharing in having difficulty communicating. After watching this movie I hugged my son a little tighter and called my mom, ensuring to say I love you before hanging up. She knows me well and asked what sappy movie I had just watched.
One question I do have after watching this movie is would he have continued to improve had he not developed pneumonia? I do not have any experience with "locked in" syndrome. Are there cases such as his that have made improvements with continued therapies? If so, to what extent?
Jocelyn the mention of not being able to express what he did not want struck me. how frustrating to have the feeling of violation with treatments you don't want. however, if he knew the outcome would he still refuse? amazing how life works.
DeleteThat part of the movie depressed me for half the day. I had to tell some of my friends about the movie to get it off my mind. We see strokes and life changing events daily in the ED. One day it could be one of us presenting with a stroke and having the quality of our lives determined by medical staff and our families. I Made my wishes known to my wife and kids.
DeleteGoing into this movie I didn't think I would really enjoy it because I heard their were subtitles involved and it was in a diffrent language, I did end up enjoying it though. I don't really think I have any questions about this movie. I really thought the cinematography was neat how they shot some of it from his point of view. I think that this was a great way to help the viewer understand what it is like to be Jean-Do. What surprised me was when he was with the speech therapist for the first time and he refuses the therapy although that was internal and know one would ever know it I thought he would be wanting to have any help at recovering or communicating. The scene I enjoyed in the movie is when his friend Roussin visits him and tells him to "Hang on to the human who is inside of you" the reason I enjoyed that so much is because I feel that is part of what we do as nurses really trying to humanize our patients. I think a big take away from this movie it to make life count. We aren't promised tomorrow and I feel it is natural to take things for granted and It's not necessarily something bad that could happen to us It could also be a loved one. The saddest thing to me with out question is when I found out he had locked in syndrome. As nurses seeing lots of people laying there in a comatose state we wonder if they are aware of what is going on. Being 100% aware of what's going on and not being able to communicate are express feelings is really sad. As a Nurse I say that is universally something we fear that could happen to us and we don't want that to happen to us because we see the struggles of what people go through everyday.
ReplyDeleteI agree with you regarding how the film was shot. It was different to watch this film with a majority of the time looking through his eye. Helps us to take a minute and focus our thinking from the perception of the patient.
DeleteI agree Alex, that so much of the time, as nurses, we see people in a comatose state, or who have had a CVA that's left them unable to verbally communicate. We may not know how much they 'hear' or understand. When caring for these patients, I always encourage their loved ones to talk to them,and give them love, compassion and encouragement. It is helpful to the patient and their loved ones to assume they can "hear".
DeleteI agree Alex, that so much of the time, as nurses, we see people in a comatose state, or who have had a CVA that's left them unable to verbally communicate. We may not know how much they 'hear' or understand. When caring for these patients, I always encourage their loved ones to talk to them,and give them love, compassion and encouragement. It is helpful to the patient and their loved ones to assume they can "hear".
DeleteLike many others, I was not looking forward to subtitles or foreign languages, I have actually never watched a movie all the way thru with them. My biggest take away form the movie is also what made me sad. being trapped in your own body, not being able to communicate and express yourself. I have families ask me regularly "can they here me?" "so they know I am here?" Of course my answer is always yes, mostly for the benefit of the family and not the patient. My question would be, without any medical complications like pneumonia, would have continued to make progress with his disability? My favorite parts of the movie were when Claude was particularly patient, kind and doting which truly showed the depth of the relationship.
ReplyDeleteI agree Jessica I really enjoyed watching the develop of the relationship between those two. When Claude shows patience that is one of the true attributes of being a nurse.
DeleteI enjoyed that part of the movie as well. Claude is an absolutely perfect example of a nurse. Patience is a hard quality to master, and especially in that type of situation. She cared for a man she had never met prior to his accident just like she would have her own family.
DeleteI agree completely with all of you about Claude... The way she laid her head on his shoulder on the boat that day, and you could see the true feelings she had developed for him, he was a normal human to her, not just a person who paid her, or an invalid. Also, the thoughtfulness of the gift... she was the one person who had really listened to him in the film, she knew his passions.
DeleteThis movie was an eye opener on how we treat our own stroke victims. I rarely see them get the care that they get in this movie. The patience the staff showed with him was amazing. Since all of us our from the acute care setting we definitely do not have the time to care for them in this way. I have never worked in a rehabilitation hospital, so I hope the care is similar to the care he got.
ReplyDeleteI like that the movies was in subtitles. It makes you pay more attention to the movie. Not only do you see what he is saying, but you hear the tone so you can not misunderstand his meaning. That was very apparent when they were sealing up his eye and when he was wheeled down the hall for the first time and saw his reflection in the window. As far as sad, the whole movie was depressing. Definitely not a date night movie. I was glad he got to finish book and tell his story. He still had no quality of life, and I can even fathom the helplessness and despair you would have in that situation.
My favorite part of the movie was when he was with his father who wanted him to change his ways. During the shaving scene when he told him to be content with the mother of his children. That he himself was unfaithful and now that his quality of life was no longer good, he missed his wife.
The scene that surprise me most was in the beginning of the movie when he was speaking, you thought for a minute that they heard him. Then when the doctor told him about his condition and he realizes no one can hear him. Then I understood the first part of the title of the movie.
I agree that the care he received was amazing. As a nurse you hope to always give your all and have the time to sit with your patients and spend as much time with them as needed. But we all know in reality we can't always do that. I do have to wonder that is the wonderful care he received due to the fact he was a high profile, wealthy patient? Perhaps a fancier, private pay facility versus a state funded, public facility. Regardless, this movie will make me hug my loved ones a little more and really focus on the attention and care I give to my patients.
DeleteI agree that the care he received was amazing. As a nurse you hope to always give your all and have the time to sit with your patients and spend as much time with them as needed. But we all know in reality we can't always do that. I do have to wonder that is the wonderful care he received due to the fact he was a high profile, wealthy patient? Perhaps a fancier, private pay facility versus a state funded, public facility. Regardless, this movie will make me hug my loved ones a little more and really focus on the attention and care I give to my patients.
DeleteI agree as well. He did receive some extraordinary care. I think it made a huge difference that he had family; his wife to be there to help care for him as well. She was super strong and patient through this difficult process.
DeleteJean-Do did receive extraordinary care in the movie. As a nurse at hospice, our care is focused differently than in the acute care settings. We are caring for the patient who maybe in a coma and the family as well. We are extending emotional support and spiritual support. I would love to be able to give each of my patients and families the kind of care Jean-Do received.
DeleteI agree with you about the advice his father was giving him about his children's mother. Her love for him was shown after his illness, as she was the one who visited, and brought the children to spend father's day with him, and took the call for him from his girlfriend and even helped him to tell her that he had been hoping for her to visit daily (despite how much it hurt her). Sadly his father's advice didn't help and I feel he was not able to be satisfied with the dedicated woman who did love him, and he still yearned the one who was not there, and very likely had been with him for the status and lifestyle only prior to his CVA.
ReplyDeleteI'm not certain how a private/ private pay rehab situation would be. I can speak from experience with my father and grandfather-in-law when they were in local rehabs covered by their insurance. While it wasn't terrible, it was nowhere near the care Jean-Do received. Interestingly enough, we brought my father home the second day as they wanted to medicate him because he liked to "wander" at night. He was always one who would get up and check things on the farm at night if he couldn't sleep. He was slightly confused at rehab, and he got up at night, thought the exit was the back door to go out and check the cows. He opened it and set off the emergency alarm. They medicated him with Haldol and restrained him. We took him home the next day so he could walk around at night and make sure everything was secure and the cows were fine.
Shelley, I'm glad you pointed out the relationship between Jean-Do and the mother if his children. I'm sure it was hard for her to see him that way, but she continued to visit and bring the children. I noticed several times she casually asked Jean-Do if "she" had been there. You could almost palpate the hurt in her voice. It was hard to watch the scene where the girlfriend called and his ex was forced to translate for them. I believe I would have needed to find someone else to do that, had I been in her place. Although, who am I kidding, I would have told her to come tell him herself and hung up the phone!
DeleteShelley, I'm glad you pointed out the relationship between Jean-Do and the mother if his children. I'm sure it was hard for her to see him that way, but she continued to visit and bring the children. I noticed several times she casually asked Jean-Do if "she" had been there. You could almost palpate the hurt in her voice. It was hard to watch the scene where the girlfriend called and his ex was forced to translate for them. I believe I would have needed to find someone else to do that, had I been in her place. Although, who am I kidding, I would have told her to come tell him herself and hung up the phone!
DeleteShe was obviously a wonderful, dedicated woman who truly loved him. Unfortunately, I don't think he was able to love her back as she deserved. I do wonder more about the circumstances surrounding how he had treated her. I am guessing from the conversation with his father, he was unfaithful and it was a painful, unwanted break up for her.
DeleteWhen the movie began, I wasn't excited about the sub-titles. But within a few minutes, I was a captured audience and couldn't stop watching even though I have to work tonight.
ReplyDeleteI felt sorry for Jean-Do. When he woke up from his coma, he couldn't communicate with the doctors and they were performing procedures on him that he didn't want. When he was able to communicate, he said "I want death". It seemed to me the women translating didn't want to believe that death was his wish.
I was glad he was able to write his story. So many times at Hospice, we have CVA patients and you know they can hear you, but are we carrying out their final wishes? I believe in the hospice setting we are. But do we really know this happens in the acute care setting.
I loved the Father's Day scene. His eldest son was so compassionate and loving.
It was a very emotional scene when Jean-Do's father called him and as he was talking, he compared their current situations. His father said he was a 92 yr old man trapped in his apartment because he couldn't walk the four flights of stairs any longer and his son was trapped in his body. Very sad. Yes, I cried.
DeleteThis film was so sad yet so beautiful at the same time. I just kept thinking how devastating that would be to wake up like that. In my dept. we get a lot patients with new onset strokes. We are wired to stabilize and treat to the best of our abilities and move on. We feel sorrow for the patient and family. Our emotions have to quickly be buried so that we can move on with other emergencies and be able to effectively do our job. Most of the time after treating someone, we never know what happens after that. This film offered a prospective from a patients eyes. A reminder that we need from time to time.
ReplyDeleteThroughout the film, I felt as is I was on an emotional roller coaster with Jean-Do. The drastic change that can happen in an instant, and ultimately changing life thereafter. This man who was only left only with his memories and imagination could only communicate with those through the movement of one eye. As one in these circumstances it is easy to see how some can pity themselves, be angry with the world, or even want to give up. It was amazing to see him striving to live to the fullest despite challenges that were facing him.
I enjoyed the film very much. It seemed a little slow at first, and I wasn't sure about reading the subtitles, but it was very easy to keep up with and follow. I cannot get over how impressed I feel that Jean-Do 'wrote' a book by blinking one eye!! That in itself was such an amazing feat. I felt very sad for him, being trapped in his body, but it appears that all his talents of creativeness, and writing abilities were amplified when he lost function of his body. His mind was so enhanced. In the movie, it seemed, the people and family he loved most, did not come to visit him. Like his Father and his lover. I was surprised that these two important people in his life did not come to see him. My favorite scene was probably when his children came to see him on Father's Day,and they were playing at the beach. They showed so much love and respect for him, regarding him and communicating with him. He enjoyed them, but later was expressing sadness at not being able to touch them. That really was a moving part. The message I received, was the resiliency of the human spirit, and how the body compensates, and in this case his mind, to a full measure of creativity and expression. A well done movie. It makes me want to read the book.
ReplyDelete