Still Alice, Still Angela
"My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment." --Lisa Genova, Still Alice
[Disclaimer: There will be some spoilers in this article if you haven't seen the film or read the book yet.]
I just finished watching the film "Still Alice" (2014), based on the novel by Lisa Genova, which I've also read. Both the book and film are excellent in their moving and stark portrayal of a woman struggling prematurely from Alzheimer's Disease. At only age 50, Alice Howland, a successful and prestigious linguistics professor, is diagnosed with familial early-onset Alzheimer's.
The film depicts Alice's journey with the disease, from the shocking Alzheimer's diagnosis to how she and her family members cope with her increasing memory loss and disability. It's a grim and heart-wrenching film, often difficult to watch at times. But it's realistic and unpatronizing, shown by Alice's daily struggles with small and large matters: misplacing her phone in the freezer for a month, getting lost at Columbia University where she teaches, fighting with her husband about missing an important dinner with his boss, forgetting who her own daughter is.
RA: A chronic debilitating disease
Similar to RA, Alzheimer's is a chronic and debilitatingly degenerative disease. It's also often misunderstood, isolating and imprisoning the patient in a world fraught with anxiety, fear, shame, guilt, and loneliness. While vastly different in many ways, both Alzheimer's and RA cause the afflicted person to lose him or herself to the disease--physically, mentally and spiritually. It cruelly and indiscriminately steals life, snatching away one's independence and shattering dreams for the future.
"I hate that this is happening to me," Alice says to her husband John. "I wish I had cancer. I mean it. I wouldn't feel so ashamed. When people have cancer, they wear pink ribbons for you, go on long walks, raise money. And you don't have to feel like some kind of a social...[outcast]."1
Cancer, of course, is terrible and devastating and something that I wouldn't wish upon anybody. Our lives have all been touched by it somehow, and there are always stories popping up in the media of fundraisers, charity events, and an outpouring of love and support for those battling the illness. "Cancer" isn't a dirty word to mention in public. Hardly. Cancer patients are loved and honored and celebrated in the media and in everyday life. It's the "cool" disease.
I do not mean in any way that having cancer is cool or something positive, of course. It's not. My own father is fighting against prostate cancer right now and I've lost several close relatives to the disease. I also do not want to imply that people who have cancer have it easier than people with other diseases. If you've known anyone with cancer (and we all do), you know the hell they've gone through.
The point I'm trying to make, and that I hope you understand, is that as a cause, cancer is much more visible than other illnesses, such as RA or Alzheimer's. It also receives a lot more support, financially and emotionally, compared to lesser known or talked about illnesses. I wish that RA, Alzheimer's, lupus, Chrohn's, and a whole host of other debilitating diseases received as much awareness and publicity.
I can relate a lot to where Alice is coming from, not having a "cool" or "popular" disease and wanting to swap mine for one that's more accepted in society--if I must have one. Like Alzheimer's, there's a sort of stigma attached to having RA. You don't want to appear weak or damaged to people, and you often feel the need to hide your pain and disabilities for fear of being judged. People just don't get it. Maybe they're unable to truly understand, not having the illness themselves, or maybe they don't want to get it. Chronic, incurable illness is scary, especially when it's degenerative and increasingly damages your quality of life. People don't want to be reminded of their own fragile mortality.
One of the most moving scenes in the film is when Alice gives a speech at an Alzheimer's Association conference. With her cognition and language functions growing steadily more impaired, she painstakingly works hard on her speech--a bit like the brilliant perfectionist academic she used to be. Standing in front of a crowd made up of fellow Alzheimer's patients and her supportive neurologist, Alice delivers a strikingly honest message of holding onto hope (and herself), while in danger of losing everything.
We are not the disease
"This is not who we are, this is our disease," Alice says. "For the time being, I'm still alive. I have things I want to do with my life. I'm not suffering, I am struggling. Struggling to be a part of things, to stay connected to who I once was."
"Losing" is a recurring theme in the film: loss of memory, loss of health, loss of independence, loss of mental function, loss of confidence and self-esteem, loss of hope, loss of bodily and other physical functions, loss of trust, loss of work and career, loss of speech, loss of dignity, loss of stability, loss of identity--and the list could go on.
The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster...
"I want to live in the moment," says Alice. "And not beat myself up so much for mastering the art of losing."
One of Alice's daughters, Lydia, becomes a surprising source of support for Alice by the end of the film. At the beginning, we see that the two women have a somewhat contentious mother-daughter relationship: Alice disapproving of Lydia not going to college to become an actress, and Lydia feeling that her mother doesn't understand her at all and is trying to control her life.
As the film progresses, along with Alice's disease, Lydia becomes the person in Alice's life who genuinely wants to understand what she's going through and to support her. Despite their differences, she doesn't want to lose her mother.
Good days and bad days
"What's it like?" Lydia asks Alice as she helps her clear the plates off the table one night after dinner. "What does it actually feel like?"
"I have good days and bad days," Alice replies. "On my good days, I can almost pass as a normal person...but I don't know what I'm going to lose next." Lydia stops what she's doing and looks at her mother silently. She then quietly says, "That sounds horrible."
Alice goes back to picking up dirty dishes, not replying to Lydia, maybe afraid of breaking down in front of her. But then she gives a little turn towards her daughter and says, "Thanks for asking." They carry on cleaning up the rest of the plates in silence.
At the end of the film, Lydia recites to Alice a passage from a play she's been studying: Tony Kushner's "Angels in America." Her eyes never leave her mother's attentive face as she speaks of "souls rising, souls of the dead wheeling and spinning and floating up like skydivers in reverse."
"Nothing is lost forever," Lydia continues, sitting across from her mother. "In this world there's a kind of painful progress. Longing for what we've left behind and dreaming ahead." Lydia then gets up and seats herself next to Alice, her face close to her mother's, her eyes still never leaving Alice's.
"Did you like that?" Lydia asks softly, as Alice rocks her body back and forth, trying to respond. "What I just read. Did you like it?" Alice smiles and looks straight back at Lydia and tries to speak but can only make a faint grunting sound.
"What was it about?" Lydia asks, trying once again to get a response from her mother.
"Love," says Alice slowly. "Love."
"Yeah, Mom," Lydia replies. "It was about love."
Nothing is lost forever, I believe, if we have love. In spite of all of the things she loses, Alice is still Alice. And despite all of the parts of me that RA has stolen, I'm still Angela.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?