On Saturday night I watched the just-released movie You’re Not You, starring Hilary Swank as a woman with ALS. Swank’s character, Kate, is 35 when the movie—and her disease—begins, and I wasn’t sure what to expect from a film that set out to tell a story that is so close to my own. Though I initially understood this to be a memoir, it is actually based on a novel written in 2007 by Michelle Wildgen. A very brief scouring of the Internet did not uncover Wildgen’s ALS connection or the source of her ability (or is it the screenwriters’ ability?) to so cleanly access many of the emotions and challenges that come with having this disease.
It was my story, at the same time that it wasn’t my story:
The pre-ALS life, full and fulfilling: check.
The initial symptoms, the confusion: check.
Fast forward to a husband helping with clothing: check.
The feelings of blame and guilt: check.
The comfort that comes from connecting with other ALS patients: check, check, check.
But…
Her friends SUCK: no check! The amazing women in my life would marvel at how anyone could be as shitty a friend as the two non-factor bubbleheads in this movie, one simply hapless, the other one actually somewhat cruel.
Kate doesn’t have kids, which is a huge difference from me, since much of the time I consider myself not just a person with ALS, but a mom with ALS. At one point in the movie, she confesses sadly that she wanted a baby, and this made my heart hurt. ALS takes so much from people, and no small amount of that is from the futures we thought we would have. I never thought I would be mom to only one child, but now that I am, I can see that fact as nothing but positive. What luck that I was able to have my baby.
The story is one of relationships, the most important being between Kate and Bec, a flaky college student played by Emmy Rossum, who annoyed me at first by yelling at some stranger she woke up next to, and then flying off to interview for a job as Kate’s caregiver. This wannabe assistant does enough harm within 20 minutes that I would never have hired her back, so I have no true understanding of why she charms Kate. But I recommend suspending your disbelief on this part, and just enjoying the dynamic between the two, which reminds me more of sisters than anything else. The younger one may be doing the heavy lifting, but the older one has at least a little wisdom to impart (even if some of it is pretty trite.)
Friends mutter under their breath in the early movie scenes about what a “saint” Kate’s husband, Evan, is. You see him buttoning her blouse and putting her mascara on. I understand the urge to laud someone who is for caring for an ailing spouse, but the implication of that is that it’s not a given. That not everyone would do it. That it is a burden. And I thought the movie did a good job of showing how that makes Kate feel.
It is a burden, of course. I feel that every day when I look at how much my own husband’s life, my sister’s life, my daughter’s life has changed because of my diagnosis. I know I didn’t ask for this, that it’s not my fault. But the guilt is there, and I’m not exactly sure how I would feel if I heard someone describe my husband as a “saint” for putting up with me and my ugly illness.
My beautiful friend Jodi, who has ALS, was invited to attend a premier of the film, where she met Hilary Swank. I know how much this meant to her, and although at first, I wasn’t sure that I was even strong enough to watch it, I think it’s awesome that Jodi was right there, supporting a film that only opened in 5 cities.
I did not cry while watching You’re Not You. I was just too fascinated by the story, by watching someone go through things I have gone through and things I guess I might go through sometime soon. I don’t know if this movie would be of unfettered interest to people who don’t have an ALS connection. I hope so. When it was over, I wanted to watch it again.
I bet Hilary Swank went home every night during filming and thanked her lucky freaking stars that she was just acting and doesn’t actually have ALS. For my part, I’m thankful that an actress of her caliber took on this project, and I hope it continues to draw attention to the disease and the people living with it. You should watch it. I’d love to know what you think.
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ALS is not anyone’s fault, least of all yours. And no family is “putting up with” their stricken loved one. It’s done out of love, though it doesn’t make it physically easier and makes it much more difficult emotionally. Sarah, I hope so very much from the bottom of my heart that you and so many others benefit from effective treatment, and quickly.
I watched this weekend. I too was struck by her lack of a support system. Her so called friends were selfish a-holes and I found myself hoping this was an extreme exaggeration if it was a true story. I thought about you and your awesome tribe of friends and family all rallying around you. Not because they have to but because they love you.
I haven’t watched it but my sister did, she said it felt more like a lifetime movie and didn’t like the ending. We lost our dad to AlS in 2009 and although he did not want any type of medical intervention he still passed away peacefully with the help of a wonderful hospice nurse and morphine.
Unfortunately I have met people with ALS who, as the disease progresses, have lost friends that just don’t know how to deal with it. We always talk about this when we screen our documentary and stress the importance of just being there for the patient and their family.
Anything that shines a light on this disease is awesome, it needs a lot more attention!
I met a man who had been living with ALS for 8 years. His wife left him and did not let his YOUNG kids see him. The people I met due to Mark’s illness were wonderful…but he lived alone and had state caregivers come in and care for him. I was overwhelmed that this kind and caring man was living alone. I cleaned his home, and he showed me picture after picture of his younger years when he was strong and athletic and downright handsome. He sat in his recliner unable to move a muscle while using his computer to communicate with me. But OH did he smile?! The joy of the Lord showed through him in amazing ways, even though he suffered every single day.
My heart broke for him. Not everyone has a team of loving, caring folks helping them.
I barely knew him, but he impacted my life in so many ways. He passed on 8/15/13 after 9.5 years of bravely fighting this horrible disease.
May God surround you with caring and loving people, and may He comfort you with His grace.
Do you know him?