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    • #11843
      Dagmar Munn

        Although the movie, “You’re Not You,” (2014), starring Hilary Swank received many positive reviews, I think the critics missed what I felt was a big flaw. Granted, Hilary Swank is one great actress and she did stellar work playing the role of Kate; a person living with ALS. But unfortunately, her “Kate” displayed a bad attitude in the way of having guilt, self-blame and an apathetic outlook!

        Of course, who could blame her? Her husband refused to help and even bullied her. Her own parents and friends were embarrassed of her ALS and went into rejection-mode. While I’m at it, I’d fire her doctor as well! Where were all those smiling, helpful ALS and MDA folks that are supposed to show up during medical appointments and home visits? Reality was suspended and a false depiction of diagnosis and living with ALS was portrayed – – all for the sake of creating a dramatic storyline. Not fair, I say.

        I know the movie was really all about the other character: “Bec;” and how her friendship with Kate blossoms and their shared emotional growth. But a little reality would help – – I saw no handicap grab bars, ramps or accessible kitchen or bathroom devices. Kate and her family seemed well-off, but they placed her in a rickety old walker – – with no indication how she managed to go up and down the stairs in her home.

        Watch the movie trailer on YouTube here.

        So, I give this movie a thumbs down.

        Or, on the positive side; the movie is a good example of “what not to do” when a friend or loved one is diagnosed with ALS.

        Have you watched this movie? What are your thoughts about how ALS is portrayed in movies?

      • #11898
        Diana Belland

          My sister told me about this movie but I’m not sure I’m up for it.   But I’ve been reluctant to watch it because it hits too close to home for me.  Swank plays a classical pianist who loses her ability to play.  I was a university music professor for 42 years until my retirement in June, 2018.  I am a classically trained pianist with a doctorate in piano performance.  I regularly gave public concerts as part of my activities as a music professor.   I was looking forward to having more time in retirement to practice and to learn and perform many of the great pieces of the piano literature that I had not had time for while teaching full time.   But, sadly, I have lost a great deal of fine motor control in my right hand just over the past six months.  Now, I cannot even play a one octave scale with my rh.   My impression, from watching the trailer, is that this film probably falls short when it comes to portraying the tragedy of losing one’s identity as a concert pianist in a realistic way.   (Hollywood never does a good job of portraying classical musicians in a realistic way!)  The film does seem more focused on Bec and Kate’s relationship than on revealing the reality of coping with ALS.   I think your “review” is probably spot on!

          At the moment, I can’t think of any other films in which ALS is portrayed in a fictional way, but my sister also suggested I watch the documentary, “Gleason.”   I think I may tackle that one first and then possibly give “You’re Not You” a try.

          Thanks for posting this very interesting topic!

        • #11929
          Dagmar Munn

            You are correct Diana. The film does not portray well the profile of a classical pianist – – or the loss felt by one experiencing ALS. I stick by my summation: this film is a good example of “what not to do” when diagnosed with ALS.   ….on second thought, the director could have taken that theme and turned it into a comedy instead.

            I share your feelings and sense of loss – – my own stemming from a life of dancing and looking forward to retirement and taking dance and movement classes for “me.” I would have loved to explore Flamenco, Tango and more ballroom (even compete!). But my feet can’t dance anymore…  so, what I’ve learned these past years of living with ALS is that: we need to accept and honor our ability to reach a pinnacle in a chosen profession…. but then be able and willing to push off in a new direction. To accept that we have more than one dimension of self-expression and intellectual creativity. That, is the challenge. And that, is where being optimistic and open to trying new things comes into play.

            Back to movies… I’m planning on watching next: “The Theory of Everything” about Stephen Hawking. Will post my review here soon.



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