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

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HAWMC 22: Day to Day

Today’s the day. My prompt is featured!!!! (insert happy dance!)

Sunrise by Sean MacEntee

For me, it’s the sun rising each and every day that really encourages me to keep going. It’s so simple, so ordinary. But it’s power is amazing.

No matter what happens: no matter how badly I’m feeling or how badly I think I’ve messed up or how mean the rest of the world is or how terrible it is to have a chronic illness — the sun rises every day. Like the rainbow in the sky, it’s God’s promise to me that no matter what, He’s in control and His presence is with me. I can see His glory surrounding me. He’s the Creator, the One who created life and continues the work of renewal throughout creation. It’s a sign of a fresh beginning, another opportunity to live another day that will count before God and man.

You know what? It seems so simple, so ordinary. But the fact that the sun came up today? It keeps me going. Because I see the power of forgiveness, the work of resurrection, the promise of life. And I’m reminded that the heavens do rule! So I can start the day singing…

A new day has dawned
The saints are going on
The glory of the Lord is coming down.
All around me I can see,
There are signs of victory.
Hallelujah! A new day has dawned.

Grateful for the ordinary,

Abigail

HAWMC 15: Post Swap

I got paired with the lovely Sarah McMillan at The Master Patient. We decided to interview each other about living with invisible illnesses. We have similar diseases and are at the same stage of life (more or less), but we actually have different perspectives on some of these questions. Read away & also check out my interview here!


Sarah McMillanBackground

My name is Sarah E. McMillan and I am a blogger at The Master Patient http://www.themasterpatient.com. I have Marfan syndrome, a connective tissue disorder that primarily affects my heart, eye, bones and joints. I am also legally blind and write a lot about my experience with invisible disability. I started The Master Patient to integrate my roles as a social researcher with my lived experience as a patient.

Q: How do you find out about your illness? Was this something that came about suddenly? Did it take a while to find the right answer?
A: I was diagnosed with Marfan syndrome (MFS) when I was two and a half, so for me, there wasn’t a specific moment in my life where I remember learning about my illness. Everything about my diagnosis I learned from my parents because I was too young to know what was happening and to be honest, I never asked much about the circumstances around it. I don’t have a “diagnosis” story, like most people with a chronic illness do; I guess I just always knew I had MFS. I remember my mom giving a presentation to my elementary school class about it. My pediatrician first suspected MFS because of my vision and heart problems, which are classic symptoms of the disorder. I fit the clinical diagnosis pretty well so that was that, there is no ambiguity around whether or not I have it, even without being genetically tested for it. For me the moment that stands out about my illness is my heart surgery when I was 10, rather than going through the process of diagnosis.

Q: What do you do when people ask you why you’re sick? (or why you’re still sick)?

A: To be honest, I never use the word ‘sick’, mostly because I don’t feel that I am ‘sick’. I actually even dislike using the word ‘illness’ and when I write about myself as having an illness, I always have that pang of ughhh. I don’t know how else to describe that feeling. To me, being sick is like having a cold or a flu, not living with a chronic disease. Did I mention that I hate the word ‘disease’ even more? Condition, chronic condition makes me feel the most comfortable. To answer the question, not many people ask me why I am sick, probably because I don’t view myself that way or present my condition that way either. There are some things I cannot do because of MFS, such as going on roller coasters (my heart) or drive (my vision) so those things come up more often. People are generally more intrigued by the fact that I am legally blind than my MSF because I appear to them as being fully sighted.

Q: How do you find a balance between being sick and not letting being sick define you? Or is there a way to redefine yourself through illness?

A: This is a good question and one I have been trying to figure out for years now. I actually wrote my graduate thesis on medicalized identity for individuals with a Marfan syndrome diagnosis because of my quest to incorporate MFS into my life. Since I have grown up with my MFS, I am not like other people who have a pre-diagnosis life and then a post-diagnosis life, but I still feel like I am redefining myself all the time, especially as I keep on exploring what living with MFS means in my life. I think it is obvious that it has shaped my life and who I am. However, I am only starting to accept that now. I spent a great deal of time in highschool and university pushing away the part of me that identified with having this condition because of the stigma that is attached to illness. For me, I found (and still find) it difficult to incorporate my illness into my identity when the whole world views illness as something that is negative, pathological and abnormal. What I have realized is that I cannot be my authentic self if I do not accept my condition and so I am slowing trying to accept it. What I really wish is that people would stop putting such a premium on being ‘healthy’.. wishful thinking.

Q: What’s one thing that you’ve learned about yourself in the past year or so, as a patient or as an activist?

A: Hmmm this is tough because I have learned a lot about myself this year. I would say the biggest thing is I am learning to be more open about my condition with others and accepting of my condition within myself. That was one of my goals for establishing The Master Patient in the first place. I guess that falls into the area of both patient and activist!


Thank you so much Sarah!!

Abigail Cashelle

HAWMC 9: Caregiver

Just took a major exam on a second set of 25 books, so the brain is fried.

I recommend that you read A Selfish Pig’s Guide to Caring if you are a caregiver. It puts a humorous twist on everything but definitely has a lot of useful tips (says the person being cared for.) The big thing is to avoid caregiver burnout, and Hugh Mariott talks about how to be appropriately selfish.

Abigail

HAWMC 8: Animal

The prompt says to describe your disease as an animal. For a person who has creatively nicknamed her adviser the “ravenous lion”, it’s surprising that I haven’t come up with an image for my disease yet.

I refer to my university as a vampire that sucks the life out of you!! Of course, I’ve also nicknamed the mascot the beaver.

I tend to think of my disease as a monster. And having it is like being buried under a giant mattress. And sometimes, I find myself feeling like the princess and the pea. I’m not trying to be a diva. I’m just sensitive to everything. And that’s when you sort of wish that you were buried under a giant mattress. Then nothing could bother you and you wouldn’t be able to hear other people complaining about your life troubles.

we're not talking about having a pile of work to do where it's all neatly organized and just has to be plowed through
we’re not talking about having a pile of work to do where it’s all neatly organized and just has to be plowed through
piles of papers
we’re talking about being buried under a confusing disaster like this where the best option seems to be to run really quickly in the opposite direction!!

Abigail

HAWMC 2: Introduction to Chronic Fatigue Syndrome

or, alternatively, Introduction to Abigail’s Syndrome. [I can’t speak for the entire community of CFS/ME sufferers. I don’t even know if I have CFS for sure, for sure. (I guess we’d have to wait until the powers to be actually define it!!)] But here’s my experience of my illness, at least the CFS part of it.

  1. It has many names. Here are some of them: chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue and immunodysfunction syndrome, post-viral fatigue syndrome, and some pretty outlandish ones like “yuppie flu” and “the Royal Free disease”. (The last one is named after a hospital where a bunch of people got the disease in 1955.) And because some of those terms are just long or extremely intimidating to pronounce, we have acronyms: CFS, ME, CFIDS, PVFS…. People disagree whether these are all the same disease and what the boundaries are, etc, etc.
  2. It is not the same as being tired. It is not the same as being tired all the time. It is not the same as being tired all the time for no reason.
  3. It is not “in your head” unless by “in your head” you mean its neurological. That very well may be true.
  4. There’s a difference between being sleepy and fatigue. If you get diagnosed with CFS (or if medical practitioners start throwing around acronyms like CFS or ME or say “the Royal Free disease”), (1) run for the hills and (2) develop a very precise vocabulary. Sleepy means that your eyes close when you don’t want them to. Fatigue means that your arms and legs feel like lead and you can’t walk. Tired means that you have no desire to do an activity. Exhaustion means that you’re so fatigued that you can’t move.
  5. #4 is important because a hallmark of CFS is insomnia AND fatigue. Two incredibly annoying things that should be oxymorons.

 

HAWMC 1: Why I Write

I write because

  • I need space to record all my thoughts & hash them out
  • I need someone other than my bestest friends hearing about all the trials of my life
  • sometimes really beautiful things happen and I want to keep track of them
  • I can look back at my life at a later date and reflect; (I am a historian, after all!)
  • my friends always tease me about having a super interesting memoir; now I can say, I’ve already got that, and seriously, I just want a boring life!!
  • even though my life has a lot of surprises, there are so many things and people that I’m grateful for

Abigail Cashelle

HAWMC 2013

Dear readers,

I finished one of my comprehensive exams. That means that I put away one stack of 25 books (hopefully!!) I’ll find out if I passed by early next week.

The amorphous blob? The defense for that proposal is coming up in a very small number of days. And I do have another exam looming in about two weeks. So all in all, a lot going on here in the school front.

On a different note, the Health Activists Writer’s Month Challenge is coming up in April!!! Believe it or not, April is going to be a crazy, crazy month for me with family stuff, school stuff, medical stuff, … the usual stuff, so I doubt I’ll be blogging every day. BUT I am participating to the best of my ability because ::drumroll:: they’re featuring a prompt of mine!!!

April 22: Day to Day — prompt #1: Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism.

Look for it!! Write about it!! Read my post (when I write and post it!!) And just generally have a very good month of April.

Sincerely,
(a slightly giddy) Abigail

Life with a Chronic Illness

Sometimes, life with a chronic illness simply isn’t fair. Now that I’ve been really sick for over a month, it’s been harder and harder to justify (to myself) missing classes even though I’m not getting better. Since there are only three weeks left to the semester, I’ve found myself self-consciously reorganizing my priorities.

For example, if I only have enough energy (and time) to get out of bed and (a) take a shower or (b) go to class, maybe I’ll just go to class. It’s hard to imagine taking a shower as an activity requiring massive amounts of energy, but these days it really is. Sometimes, it seems worthwhile to go to church and see people rather than take a shower.

I do still take a shower on a fairly regular basis. I wear new clothes every day. I long for days with more energy. But in the mean time, I create posters like this one.

Honestly,
Abigail

Friends: Types?

Timothy asked me the other day if there were other students in my program who were rooting for me to succeed. He assured me that he was cheering me on but qualified it by pointing out that he wasn’t really familiar with what being a graduate student was like.

While that is undoubtedly true, his comment got me thinking. Is he automatically disqualified because he hasn’t walked in my footsteps? I was reminded of Molly Piper’s series about comforting a friend through stillbirth. In many ways, her point is germane.

She writes, “When you want to say, ‘I can’t imagine,’ just try.” It’s true that a person may have never experienced the precise situation at hand. But is saying “I can’t imagine” meaning “I don’t want to imagine”?

I remember reading her post and being moved. I remember thinking that her words even helped me to want to enter into someone else’s grief. It’s been in the back of my mind as I’ve watched other friends experience very difficult trials.

I told Timothy that, to my way of thinking, there are three types of friends:
1) friends who have experienced the same thing… sympathy
2) friends who imagine the experience & strive to relate… empathy
3) friends who keep a distance because they don’t understand, don’t have the capacity to, or don’t want to… apathy

It’s true that he can’t be friend type #1. But he is friend type #2, and that matters a lot. In fact, the validation that comes with an outsider recognizing your pain and grieving with you can be more meaningful than someone who can say “been there, done that.”

For those of you like Timothy, imagine what it’s like. Take a moment to step into our shoes. Realize that our life is very complicated, so ask specific questions. The fact that you care and that you’re willing to take time to walk beside us means more to us than you can imagine.