1Wow! Spot on...In so many ways. Granted I wasn't in the the same socio-economic circumstance, and neither do I play piano but I was passionate about knitting and I lost the ability to engage in my passion practically from the onset of the ALS. Symptoms first manifested in my right hand as well.
I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application.
I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus). I don't really get why somebody would opt out of a non-invasive solution to shortness of breath. But I do understand her decision not to get trached and vented. What a loss to have to lay there and not speak nor eat.
She was devastated when she found out her her husband, Evan, played by Josh Duhamel, was having an affair. Who wouldn't be!? But I felt that moment when they were turning in for the night and her husband turned his back on her instead of cuddling or having relations. I felt my own moment of demarcation (if you will) when I it became apparent that I was no longer sexually attractive to my spouse. I was no longer allowed to be a sexual being. Kate handled it well but I did not.
This movie, "You're Not You", was so similar to my experience, with one huge difference. I experienced total financial ruin, abandonment, and nursing homes taking away the last of my freedoms. Maybe one day they'll make another ALS-centric movie exposing these horrors.
I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application.
I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus). I don't really get why somebody would opt out of a non-invasive solution to shortness of breath. But I do understand her decision not to get trached and vented. What a loss to have to lay there and not speak nor eat.
She was devastated when she found out her her husband, Evan, played by Josh Duhamel, was having an affair. Who wouldn't be!? But I felt that moment when they were turning in for the night and her husband turned his back on her instead of cuddling or having relations. I felt my own moment of demarcation (if you will) when I it became apparent that I was no longer sexually attractive to my spouse. I was no longer allowed to be a sexual being. Kate handled it well but I did not.
This movie, "You're Not You", was so similar to my experience, with one huge difference. I experienced total financial ruin, abandonment, and nursing homes taking away the last of my freedoms. Maybe one day they'll make another ALS-centric movie exposing these horrors.
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ReplyDeleteHi, Tina,
ReplyDeleteOops - part of my comment got deleted and made it really awkward, so I'm trying again....
I'll look up this movie. There's one out there for me, too. It's called ADAM. When I saw it the first time it was eerie - like somebody walked around looking at life from behind my eyes. What they do with the camera to simulate some of the odd sensory phenomena associated with autism is accurate...and creepy. I have a few close friends who know how autism affects me, and one of them asked me how realistic it was. Very. I'm a little further along the spectrum than Adam was, but I haven't always been. I really liked the movie...all except for the last five minutes, when the main character does something that is TOTALLY unrealistic and I groaned and may have possibly stuck my tongue out at the screen. I suppose somebody thought they needed to give the movie an uplifting, potentially happy ending. But that's really not the way autism works, and they lost me at that point.
I'm glad you're being supported so much better over there.
Debbie, I did not have any idea! I will watch ADAM soon as I find it. I'm glad to know about it. Thank you again for continuing to read my blog. Have you started writing, yet?
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