Tag Archive | life with a chronic disease

CPBC: The Fault in Our Stars

Confession: I’m obsessed with The Fault in Our Stars by John Green. After I watched the movie, I listened to the audiobook. And then I bought the book. Now I have the movie. And yeah, I didn’t just listen, buy, and possess. I may have entire portions of this story memorized. (Just nowhere near as obsessed as Hazel is with An Imperial Afflication. So I suppose it could be a lot worse.)

Anyways, I put together a treasury of #tfios interpretations in art form. I have a really hard time with visuals. (Explains why I found audiobooks such a resource.) But it’s cool to see how other people have interpreted this story.

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But there are definitely a few things that have really helped me. First, the idea that persons who are chronically ill can love and have as deep psychological needs as other “normal” people. Hazel has a long soliloquy about Abraham Maslow’s hierarchy of needs and how according to his hierarchy, people are struggling to survive cannot think about art or the meaning of life, etc. But it’s simply not true. In fact, it seems that the fight for life makes those things even more important.

Second, the priest comforts Gus’ friends and family at his funeral by saying that in heaven, Gus is made whole, a conclusion that Hazel scoffs at. At first, I wasn’t sure what Green was getting at. Isn’t part of the next life about being freed from the body of this humiliation??

I was already starting to get [frustrated] at the minister when he said, “In heaven, Augustus will finally be healed and whole,” implying that he had been less whole than other people due to his leglessness, and I kind of could not repress my sigh of disgust.”

And I think that she does have a point here. Somehow, being sick makes you a less valid human in the eyes of some and it’s simply not true. This matches the first point.

Thirdly, the way in which John Green has Hazel defend Monica and her inability to deal with Isaac’s illness is unique and inherently helpful, particularly in light of the first two points. Even though people should treat those with chronic or terminal illnesses like real human beings, a lot times they don’t simply because they can’t. While that may be a weakness or feel unfair, if we are to cut ourselves slack and realize that we can’t be and do everything that we want to, then we also owe it to the rest of mankind to allow them to be true to their own capacity. Because nothing is worse than people pretending like they can do or be something that they really can’t (or don’t.)

Fourthly, I like the way Green deals with “encouragements”. Hazel has a really hard time with a lot of the standard lexicon of words to encourage the sick, but when Gus reveals the extent of his illness, she winds up giving him the whole litany of them. Why? Because the human understanding is often inadequate of dealing with the harsh reality of illness & death.

“You get to battle cancer,” I said. “That is your battle. And you’ll keep fighting,” I told him. I hated it when people tried to build me up to prepare for battle, but I did it to him, anyway. “You’ll… you’ll… live your best life today. This is your war now.” I despised myself for the cheesy sentiment, but what else did I have?

Even with the intimate and personal experience of illness, it can be difficult to relate or to know what to say. I love that Green has Hazel rely on words from support group: “Living our best life today” because it shows that support group really did help her through the most difficult times even though she would be the last one to ever admit it. And in the end, this reinforces point #3. Facing illness is really hard, and sometimes we do want to run away even if we know we shouldn’t.

And lastly, grief and illness doesn’t really change who you are. I love the way in which Green deals with this throughout the book. He talks about Gus’ handsomeness and thoughtfulness, which his sisters admires. He describes Isaac’s desperate need for love and Gus’ craving for the status of hero. He shows van Houten’s miserable, selfish ways before and after his daughter’s fight with cancer.

I was insufferable long before we lost her. Grief does not change you, Hazel. It reveals you.

I love this concept because I think we make illness too much a focus of our existence or our life story. But really, as Gus points out, it’s important to focus on you and not your “cancer” story (or whatever). Because who you are is only made more manifest by trouble and trials. Not the other way around.

Abigail

P.S. Yes, I’m also reading This Light Won’t Go Out: The Life and Words of Esther Earl, a book based on the writings of a young woman who inspired and encouraged John Green and to whom his book is dedicated.

the tables have turned (in a good way)

Now that I’m on faculty at a university (can we just pause and reflect on how amazing that is??), I have a student in my class with a significant chronic illness. She came up to me with some paperwork from the Disability Office asking for some specific accommodations. Now accommodations are annoying to teachers, and I get why. You have some great plan and vision for your class, and all of a sudden some random person comes up to you and says, Sorry. Mandatory change of plans.

But I looked at her sheet and listened to what she had to say and realized that she wasn’t asking for a whole lot. In fact, she was asking for exactly what I asked the ravenous lion for on my very first encounter. She asked for a flexible attendance policy. Attendance is mandatory in my class. You can miss up to 3 classes penalty-free, and attendance counts as 10% of the grade. That’s bad news if you have an unpredictable chronic illness.

What made me really happy was that I was able to sit down with the student and talk through some of the logistics with her. I told her that I was more than happy to give her the full 10% as long as she realized that she was fully responsible for all the content in the class. If she missed a lot of classes, it would be a huge challenge to pass the class. (So it doesn’t really give her much of an advantage.)

But mostly we just talked about life with a chronic illness. I asked her if there was anything she wanted me to know about her illness, anything that I could do to make things easier or intervene in the case of an emergency. I told her that I myself have a chronic illness and am familiar with how scary that can seem to other people. And that secret made her really happy.

She said that most people are freaked out when they find out that she’s not healthy and immediately want her to vanish. And so she spends a lot of time thinking about accidentally making other people feel uncomfortable and how she can avoid that. She was really happy to meet a teacher who felt comfortable talking to her about it and who was immediately on her side. She said that she felt so much safer in the class.

I’m so happy that she found me approachable and understanding. I’m still really nervous about my illness and my lack of a Ph.D. in the department and haven’t told anyone at this university about my illness besides her. I know exactly how she feels because I live in that exact same world. But I’m glad that I could make her feel a little more at home in school. And it gives me a comrade too. Someone else who knows that I’m also struggling some and that sometimes, things are not what they appear.

Abigail

the rest of that ER story

I realize that I left you hanging with that last post. I guess that’s what happens when you write blog posts at 4 am. Short Story: I’m fine. Long story:…

I haven’t been sleeping very well because I’ve been a lot of pain. (I guess so much for telling the doctors that I’d been in much less pain.) Anyhow, I woke up because I really couldn’t sleep, and I was in a really bad mood. I couldn’t decide if I was just hungry or actually in pain, so I tried eating some stuff which made things worse. In debating over whether or not to go to the ER, things got WAY worse. So I wrote a note to the family, put it on my bedroom door, and grabbed some stuff & Molly and headed to the ER. Fortunately, I’d done my research before and figured out which ER made the most sense for me. (There are three ERs that are basically the same distance from my house.) That was about 3:15 am.

The whole trip was kind of surreal. I was SO exhausted that I wasn’t thinking clearly most of the time, but I was feeling bad enough to know that I couldn’t leave. I spent at least two hours in the waiting room with a young couple and their 14 month old daughter. She was really cute, and we managed to lean on each other a little bit emotionally, so that was nice. Both the dad and I had a lot of abdominal pain but were trying to be really saintly about it. (Not sure how much we succeeded on that point.) So I was grateful for the company, and Molly made a new friend.

I would have to say that it was the one time in my life that I was jealous of someone with appendicitis and was heading to emergency surgery. It sounds bad, but I saw the dad in the hallway right when he was getting diagnosed (and then word travels around the ER pretty easily since there aren’t exactly real walls.) I felt bad for him and for what they were going through and was praying for them and everything. I was just jealous of the fact that his middle-of-the-night ER trip was totally justified, that he had an answer, and that he was given a solution. Unfortunately, I had none of those.

They were able to confirm that I do not have appendicitis nor an infection nor anything else life threatening. It wasn’t even immediately obvious if it justified an ER visit anyways. It could have been an entire waste of $700 and a whole bunch of “sleep”. But talking it over with Alana, I realized that there were some serious red flags. Like I measured my heartrate with my phone app and it was 136 beats/minute. (My resting heart rate is generally under 70 bpm.) I was so scared and so tense because of the pain that I was having a hard time breathing. So perhaps even if the ER doctor was confused why I went in, I think it’s a good thing that I got things checked out and that I got a few things ruled out right away. Otherwise, this girl who has to take care of herself all the time would have maxed out capacity-wise.

So yeah, I didn’t get back to my house until 9 am. And I taught two classes and tutored for an hour all after that.

I’m actually still up and down as far as pain is concerned. Dr. Leo has me on some formula that’s helped some when eating is just a nightmare. And I’ve been trying to rest a lot even when I’m not tired because I know my body is in mega temper tantrum mode still. I’ve been listening to this song (above) over and over again when I can’t fall asleep at night. I reminds me of great childhood memories, and it helps with the not freaking out & actually breathing. And I try to remember that my body tends to throw fits when it’s thrown new things. So I’m trying to take it all in stride.

Just another day in the life,
Abigail

CPBC: The Fault in Our Stars

Molly and I snuck out tonight and saw a movie. I’d been hoping to do something really grand for the 4th like go to a waterpark or visit some friends. But my hip is majorly hurting me, it was supposed to be storming, and my friends are (mostly) out of town. So a movie it was.

We saw The Fault in Our Stars based on the novel by John Green. It was beautiful, very heartfelt with really amazing acting.

The premise goes something like this: a teenage girl has been diagnosed with terminal cancer… in her lungs which makes it difficult to breathe. She’s convinced that the only point to life is to make her parents happy because if she dies, the meaning of their life will die with her. Her mom forces her to go to a cancer support group meeting week after week where she meets this teenage boy. She falls for him because he’s handsome and smart and kind of dangerous (and oh he also has cancer but he’s in remission.) The story follows them as they fall in love and are destined to live happily ever after until cancer gets in the way of destiny. Something like that.

I like movies about characters struggling with illness because it’s something I spend a lot of time thinking about. The Fault in Our Stars has some amazing jokes about being a chronic patient that are really relatable, like how people always tell you that you are brave for living with illness (is living with an illness a choice?) and you’re strong for saving that this pain is only 9 out of 10 (when all you’re thinking is how is pain quantifiable? and there has to be something worse than this even though you really wish there wasn’t.) The problem is that they tend to have cheesy endings. And usually someone ends up dead. Like A Walk to Remember or The Sisterhood of the Traveling Pants. And it’s all about survivor guilt and the legacy that people leave when they succumb to illness. Or Dear John or The Vow where the premise seems to be about letting go of the past you can’t change and holding on to the hope of the future. They make for great movies but rather cheesy realities. Even though some of them are based on the lives of real people.

TThe Fault in Our Stars has its fair share of movie stereotypes. But it has sufficient redeeming moments to make it worth watching.

  • Like the moment when Hazel confronts her parents about their motivation behind her positive prognosis. It turns into a conversation about how her mom is going to continue to live a purposeful life even after she dies.
  • Or when Hazel tells her dad that it’s not fair to Gus to be his girlfriend, and her dad tells her that it’s not fair to be her parents either and that they’re thinking of abandoning her on the sidewalk outside an orphanage and just walking away so they can live the life that they were supposed to live. For reals. Not even kidding.
  • Or what it means when two (or three) broken people support each other and lean on each other and face their fears together.
  • Or what happens (spoiler alert) when someone dies, and it’s not the person that was “supposed” to die. What does it mean to walk in the shadow of death? How does a dying person survive?
  • Why is it that the simple platitudes that are all around us never seem to bring us any comfort? At “that person’s” funeral, Hazel makes a comment that funerals are really to comfort the living, not to speak to the dead. And sometimes that means ignoring the truth and sugarcoating the past because it’s easier to swallow.

Oh, and the best part, egging the car!! Because I’ve definitely like shattering something. (But the stupid chronic fatigue syndrome keeps me from ever actually getting out and being destructive.) And because the last I thought of when he said, Do you have $5? was that that they were going to egg a car. Plus the line: Between us, we have five legs, four eyes, two and a half pairs of working lungs, and two dozen eggs. So I would suggest you get out of the way.

There were definitely parts of the movie I didn’t understand. And parts of the movie that I would have left out. But I could feel that the movie (or the storyline at least) was written by someone who had passed through the loss that comes with chronic illness and comes before death. And now that I think about it, it makes sense. John and Hank Green are a working example of two brothers supporting each other, making up for each other’s deficiencies, and supporting each other’s curiosities. Hank’s been very frank about his long journey with Crohn’s disease and the way in which society affects us and we them. It’s lovely to see John’s perspective on the issue, particularly in the form of entertainment.

I might just have to start reading the book! Molly, I sense a visit to the library or the bookstore in the very near future.

Abigail