We watched "You're Not You" on Netflix last night, a movie about a pianist (Hilary Swank) with ALS and her slow descent into death. We were drawn to it because my husband is a professional pianist and I've been suffering chronic illnesses. When you boil the movie down, it's basically another Million Dollar Baby, but only half as powerful and meaningful. It wasn't a bad movie, but it could have been so much better. A few things irritated me, and these things are a great reflection of the problems with how healthy people view chronically ill people:
1. The movie jumped right into the main character starting to get sick. We never got to know her as the person she is, we only learned about her as a sick person. For a movie titled "You're Not You" I don't know who the "You" actually ever was. This irritates me because it's so easy to forget who a sick person is. What are their dreams and passions? How did they spend their time? How did they treat people? What was their social life like? Were they independent, codependent, respected, admired...? I don't know! I knew next to nothing about the character of the main character except that she was a pianist married to a super wealthy lawyer. She was meant to just be viewed as "the sick character." I wanted to know who this poor woman was, and what kind of loss it was to the world when she died. It angered me because I don't want to be viewed that way, as "the sick person," and I feel the movie trained the audience to have pity on sick people instead of respecting who they are as people. I am a person who happens to have an illness, I am not a sickness.
2. I was angry at the main character for not allowing people to love her. Her greatest character trait was pushing people out of her life so they didn't have to be ruined by her illness too. We saw the effects of her pushing out her husband first, then her caretaker later. The problem was, these people had purpose in caring for her. They were better people because of her. She refused to recognize that, and instead wanted them to leave her so they could live their lives without being dragged down by her suffering. She didn't value her life or her ability to contribute to the world, even with an illness. This character was just an illness, hardly a person. The movie did do a wonderful job showing the pain and torment that the second main character, her caretaker, went through when she was pushed away, or "fired."
3. This wasn't a story about the value of life. It was a story about surrendering to an illness and wanting to die. It was about being physically alive, but having already given up on living. I firmly believe that all life has value, even the life of people suffering with serious illness who have no hope of survival. I understand, and can sympathize with choosing not to have medical treatments in order to die a little sooner and have less suffering. But she didn't even try to live with what life she had left - well, she did for a few short scenes, but she went right back to feeling like it was wrong of her to enjoy herself. The movie really needed to show the value of the life she still had in her more so than just showing how heartbroken her caretaker was.
I'm just sad that this movie had the opportunity to teach people empathy for for the chronically ill, but it really just left me with the impression that chronically ill people have too little value left and should be allowed to die. That they still deserve love, but very few people are willing to give it.
The one major point that I really appreciated and connected with was that the main character didn't want a trained nurse as a caretaker. She ended up hiring a disorganized mess of a young woman to be her caretaker, despite not knowing anything about chronic illnesses or nursing. She did this against her husband's wishes because she knew that this girl would actually listen to her. She wasn't a trained nurse, therefore she could be trained to the main character's specific needs. She didn't want to work with a new doctor or take experimental drugs, because they just give false hope without actually listening to her needs or desires. This really resonated with me because I've also grown so angry with health care professionals who think that their training is more important than listening to and adapting to the patient. My naturopathic doctor is incredible in that he meets me on my level, gets to know me, lets me tell me every little detail that's wrong, and fully considers the implications of everything I complain about. He quells my worries and gives me real hope - not false positivity. He uses his training to treat me, but he adapts it to me, specifically. The main character found this same trait her in young caretaker, so she held on to her.
Please, just remember that the chronically ill are PEOPLE. Human beings with a heart and soul, dreams and goal, and plenty of love and life to give despite their limitations!
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