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As a girl with chronic illness, The Fault in Our Stars isn’t just a love story

by Montgomery Jones

I first read The Fault in Our Stars in February of 2012. As a nerdfighter and avid book reader, I make it a point to read books by my favorite authors hot off the presses.  At that time there was not a huge following for the book, so there were no whispers or spoilers about the ending.  I started reading it on a plane and finished reading it in a salon, where I burst out crying when I read the last page.  I closed the book, took a deep breath and tried to answer my stylist as she questioned my tears.  The Fault in Our Stars touched me in more ways than one.

TFiOS (as many of the fans call it) is about Hazel Grace Lancaster,  a 16 year old with thyroid cancer.  Diagnosed when she was in middle school, Hazel spends most of her time at home rereading her favorite book.  Being inside Hazel’s somewhat cynical head reminded me so much of my own, as her thoughts were what my thoughts had been  just a few years before.  Hazel attends a support group where she meets a young man named Augustus Waters, who has been in remission for over a year.  TFiOS has such avid fans mostly  because of the relationship between Hazel and Augustus.  It truly is beautiful and magical.  Augustus is everything that awkward girl in the back of your class could ask for.  He’s essentially perfect, and he seeks Hazel out only to tell her how beautiful and wonderful she is.  In no way am I bashing this love plot–it’s what draws so many in!  But, having never been in love, I didn’t relate to that part of the story as much. When Augustus came along it was almost like a fantasy to me, one that I enjoyed but wasn’t quite able to connect with. Instead I found comfort in the scenes of people staring and asking questions, the hardships of being a young person with such an illness, and the loneliness that comes with being “the sick kid.”

People do write about kids with chronic illnesses–John Green isn’t the first to have done so and he knows that.  But never have I read a book I felt more connected to.  As a 20-year-old woman battling lupus and arthritis, as well as other illnesses that I’ve vanquished (lung problems etc.–I like to pretend they are evil villains I must defeat), I’ve spent almost half my life fighting off…well, myself.  Lupus is a disease in which my immune system is attacking my body.  My joints, muscles, kidneys, skin,and  blood are just some of the victims of this horrible chronic illness, which is complicated by depression and anxiety.  I used to jokingly say that Lupus was my boyfriend because my whole life centered on it.  I was pulled out of school for long periods of time, I had very little human contact besides my family and my doctors, and most of my down time was spent reading and watching crappy reality shows.  Sometimes I would just sit there and question how I got to this point.  I have always been a straight A student, never anything less than a B, I was very outgoing and had many friends, and I prided myself on being active.  How did I get to that point?

When I was 13 years old, my wrist started aching.  I had to wear a brace and my mom said it was just part of my constant growth spurts.  All the kids asked me what happened, and I said “nothing” because nothing had happened. I vividly remember one recess, some kid teasing and saying I was faking, but I knew the pain was real.  Pictures of me at Disney Land when I was 8 show me wearing an ankle brace for excruciating pain that came out of nowhere.  Sometimes, albeit not as often, my joints just stopped working.  They would swell and ache so much that I could not move them.  But these incidents were spread out enough over the years we just called them growing pains, because I’ve always been tall.

Freshmen year of high school I was in advanced math, Spanish II, and an advanced English class.  I was on the swim team and had to be at practice before and after school, not to mention school clubs I was in–I love clubs!  It was a lot, to say the least.  Perhaps it was the stress, but about that time, fall of my freshmen year, was when I started to get sick.  I have vivid memories of days with the pain even though I was sick for months at a time with little to no relief.  One day I tried to pull myself out of the pool and I just couldn’t.  My wrists felt like I broke them.  I started crying, my tears falling in to the chlorinated water, my cheeks enflamed with embarrassment.  No one knew what was going on, I didn’t know what was going on.  Those three memories; Disney Land, 8th grade recess, and the pool are forever engrained in my mind.  I think of them as the warnings of the storm to come.

I lost the ability to interact with people my age; I either had a walker or cane always by my side; I was failing everything in school and life, and I had no idea why my body hated me. The Fault in Our Stars shows the isolation associated with disease so well.  In the book, Hazel encounters a girl she used to be friends with, and I remember that feeling.  Trying to discuss gossip or football games, things you are no longer a part of.  It’s truly awkward for all parties involved.  I can recall–and this is such a painful memory–but I remember begging some friends to hang out with me and being denied, hearing excuse after excuse. People I used to have sleepovers with were now too afraid to be around the girl who had spasm attacks and had to be carried out of the classroom by security or the paramedics (if she even came to school at all).  What’s more sad is when I stopped trying to interact with friends,  shen I no longer wanted to be around anyone.  That’s the opposite of who I was pre-illness.

It took years for me to get diagnosed because lupus is a tricky disease.  It took visits to the emergency room, several 911 calls, almost a year’s worth of school missed, and a loss of almost all my friends before I was finally diagnosed at Cleveland Clinic.  The doctor went over my  large file—x-rays, medical records, countless test results–for about two hours before finally give me a diagnosis.  No one wants to have lupus, but in a practical world, I am happy to have been diagnosed so as to move forward and treat this awful disease rather than be misdiagnosed (as I had been) or told that I was lying (as I had been) at a previous hospital.  Lupus is no stranger to the misdiagnosis problem. I have spoken to many fell #spoonies (as we refer to ourselves) on Twitter, and it’s common to be told that we have fibromyalgia (a rheuomatoligcal disease) or that we’re exaggerating, because there is no one test to determine lupus.  I am now treated at University of Michigan hospitals where I am happy to say I am on the mend.  Lupus means “wolf” in Latin, and certainly feels like a wild animal attacking, but if you can make a clean breakaway for it then you can live a very healthy life.

When I found out I had lupus, I thought all would be well once I was treated, but then we realized there was also major anxiety and depression that I was battling, so my mom reached out to lupus organizations that could help.  Like Hazel, I went to a support group. But instead of meeting Prince Charming, I met a room full of women (90% of people with systemic lupus erythematosus are women) ages 50 and up who, on my fourth visit, told me how they had all had strokes or this and that and warned me that it could happen to me too.  I never went back.  That’s what I mean about the book being almost like a fantasy in some aspects.  Obviously I would love to meet a prince charming at support group–or even people in the same phase of life!–but my unfortunately my age just ostracized me from the group.

I went through extensive therapy at a rehab establishment, Milestones, where I completed physical therapy, mental therapy, art therapy, and therapeutic recreation. With the help of a teacher there I graduated high school only a year later than I was supposed to.  At Milestones I met a lot of kids with debilitating diseases.  It was good to know I was not alone in my plight.

Books saved me from myself and Milestones revived me.  I am happy to say I’m in remission for the most part.  I get occasional flares, but nothing like the dark days.  Anxiety and depression are still major issues, but they’re nothing I am ashamed of anymore.  I have been through a lot, and that can’t be fixed as easily (not that lupus had a quick cure!).  I am taking 20+ pills a day; I struggle with my memory and weight gain; I’ve had had numerous side effects from the pills that keep me going. They’re both a blessing and a curse.  Sometimes I think about people in my predicament who don’t have access to doctors or have a team behind them like I did and it breaks my heart.  I barely made it even with all that help.

I can’t write about this and not mention the young woman who inspired John Green to write TFIOS.  Esther Grace Earl was a nerdfighter, a writer, and a friend of John’s, and she died from thyroid cancer when she was 16.  She shared only a middle name with Hazel (they are NOT the same people) but through her death, she has united so many fellow sick kids. She shattered the isolation spell and opened dialogues about kids and young adults with chronic and terminal illnesses.  The only thing I share with Esther is a birthday (I am exactly one year older), but I can’t thank her or her wonderful family enough for telling her story through her own words via the book This Star Won’t Go Out.  Esther was a real person with a real disease who lived life to the fullest. She had her bad days I’m sure, but I can’t help but look up to her and her graciousness as a saint to those plagued with disease.

The Fault in Our Stars means different things to different people, but that’s the beauty of stories.  They can touch countless lives.  Lupus is the disease you cant see “but you don’t look sick” is an actual thing we #spoonies commonly quote.  But as I step out in the sun little by little, hike up inactive volcanoes step by step, and eventually graduate college bit by bit, I hope to live a life where wolves are the last thing on my mind.

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3 Responses to “As a girl with chronic illness, The Fault in Our Stars isn’t just a love story”

  1. Anna says:

    Wonderful article! Thank you for sharing your experiences and your connection to the book! You are so strong in being able to write openly about your life and very witty in personifying Lupus in the wolf! Wow.

  2. Lori Earl says:

    Montgomery, this is beautifully written–and so courageous. I know that sharing your story will help so many others, just as sharing Esther’s story has done <3

  3. Josie says:

    Meg,

    Its been a blessing to know you and see how far you have come over the years. You are a voice for so many, and you continue to make the lives of those around you stronger with your courage. You have the gift of reaching out to people through your experiences and continue to make an impact on others where ever you go.
    This is beautifully written, I can say going through some of the similar difficulties in life we can all relate; whether its being taken out of school or being alienated from friends.
    What you project in this article is when the going gets tough… you keep moving forward, be thankful for the love and support from those around you and stay positive. Thank you Montgomery for giving us hope that we can accomplish anything we put our mind to, no matter what cards we are delt with.

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