RArainbow

A resource blog for young women living with (Juvenile) Rheumatoid Arthritis


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“The Fault In Our Stars” movie (spoiler alert!)

Hi everyone! I recently saw The Fault In Our Stars movie and wanted to share some thoughts on it. I am a huge fan of the book by John Green (which I wrote about here) and so I was really looking forward to this movie. And I loved it! Though they had to make some changes in the movie and omit some parts, overall the movie held on to the honesty of the book, which is really what makes the story so special.

We all know it’s a romance and we all know it’s about cancer – but the story is more realistic and deep than the typical romantic-comedy (or illness film, for that matter). Our protagonists Hazel and Gus explore so many different questions and concepts when it comes to being chronically ill, such as “oblivion” and making a mark on the world and who will remember us when we pass on. Also, although the characters all have cancer, the story does not focus on cancer itself. This is not one of those stories where the character triumphs against all odds and everyone lives happily ever after. Instead, it’s about teens who have cancer and how they spend their lives – definitely more realistic than what we’ve ever seen in the mainstream media. And though there may not be the typical “happily ever after” that we’re accustomed to seeing, there is definitely a lot of joy which they find in their lives, even with cancer.

Having had autoimmune arthritis for most of my life, I related a lot to Hazel and the other young characters faced with illness. From the very first lines of the movie, I knew exactly what Hazel meant when she says, “I believe we have a choice in this world about how to tell sad stories. On the one hand, you can sugarcoat it. When nothing is too messed up that can’t be fixed by a Peter Gabriel song. I like that version as much as the next girl does. It’s just not the truth.”

When it comes to illness, I’ve realized that it is very difficult for persons (especially healthy persons) to be exposed to the reality of a life of illness. The world loves winners and we love to hear stories about persons overcoming their illnesses and going into remission, about persons with prosthetic limbs becoming amazing athletes and about persons triumphing in tough situations. I won’t lie, I love those stories too (and you know I share them on this site all the time). They absolutely inspire me and give me energy and motivation to keep pushing ahead. But illness is definitely not a glamorous situation, and persons who excel have to work hard (and experience a lot of mental pain as well as physical pain) to get where they’re going. In short, it’s not easy.

One of the most thought-provoking lines of the film uttered by Augustus Waters is, “That’s the thing about pain. It demands to be felt.” I have to agree when it comes to emotional pain. We try to avoid pain and painful situations in our lives, but the reality is that sometimes the only way to get through a situation is to experience that pain and work though it, even if it means tears are going to be streaming down our face. Running from pain means it’s always there, just below the surface. Painting a smile on our faces and pretending that nothing is wrong doesn’t work out in the long run, does it? Sometimes, it’s only by facing that painful situation head on that we learn to really accept and deal with it – and this is what makes us stronger and smarter for the future.

I liked Hazel’s story because it showed the reality of living with chronic illness as a young person. Yes, there are a million doctor visits and needles and pain, but there are also beautiful moments of joy and “normal” life too. They still went out and had great times together, like every other person their age. Their love and bond was extremely beautiful – but not in a sappy, puke-inducing kind of way 😉 . Watching them and knowing what they were both experiencing health-wise, I felt glad that they had each other to lean on. When you are sick or going through tough times is really when you need love in your life (whether it is from significant others, family or friends).

I think that having arthritis made the movie more personal to me as I related to the pain of the characters and their thoughts, fears and frustrations. My heart went out to Gus as he broke down crying at the gas-station as he tried to buy a pack of cigarettes – and hold on to a shred of normalcy and independence in his life with the cancer. If you have a chronic illness, then you can probably relate.

All in all, this movie is definitely worth watching and quite funny at times. I am extremely happy that a mainstream movie has come along starring young people with illness. The movie is not overly sad or over-dramatic or sappy – it’s just right. I did cry throughout most of the movie, but I think it’s because I was able to relate to Hazel’s words a lot. For those of you who don’t live with illness, did you cry as much as I did? Haha, please let me know!

Whether you have an illness or not, please let me know in the comments what you thought of the film, or if you are planning to go see it. Thanks guys! 🙂

❤ Ms. Rainbow.

 


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The Fault In Our Stars (Spoiler Alert!)

Hi everyone! I know I’ve been gone for some time. Life, as well as arthritis, has been keeping me incredibly busy, but I am plodding along! Today I wanted to discuss a book which has become very popular lately due to the fact that it will be appearing in movie format next month – The Fault In Our Stars, by John Green.

I will try to write this post without giving away too much of the plot ;). The book is basically about two teenagers who are living with cancer and their experiences together. The ending is actually a little predictable, but I still really enjoyed this story.

Why? Because the story is so honest and there are no sugar-coatings. The blunt, honest questions of the main characters Hazel and Augustus are questions I’m willing to bet almost every chronically-ill youth has asked himself/herself at some point. When the characters become frustrated or feel pain, we can feel their pain too – because their stories are our stories too. Because the story is told from teen Hazel’s point of view, the tone is very much that of a young person, and I found myself laughing and smiling at so many of her observations, because I’ve had those same thoughts myself many a time.

There comes a point with illness when we get very used to our situations. We get used to the pain, the needles, the hours in waiting rooms, the stares from strangers, the well-intentioned but sometimes hurtful words from persons who don’t understand illness and the “sick” lifestyle. And eventually, many of us start making jokes about it – because laughing about it is more fun than crying about it, right? Our main characters have reached this point of comfort where they are able to poke fun at their respective situations. However, that doesn’t mean that they are invincible and we get honest insights into their thoughts and struggles and pains when life becomes too overwhelming.

One of the repeated lines in the book is that “The world is not a wish-granting factory.” If you are living with illness, I’m sure that’s a concept you’ve realized all too well. There are so many great themes in this book, and depending on our own experiences, we will all take away something different from it.

If you are a chronically-ill person, I definitely recommend taking the time to read this book. But do get the tissues ready, tears will be shed! Consider yourself warned! 😉 If you’re read “The Fault In Our Stars,” let me know what you thought about it in the comments below. Thanks!

Lots and lots of gentle hugs ❤ ,
Ms. Rainbow


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The Lego Movie, Juvenile Arthritis and being the Master Builder of your own life

[SPOILER ALERT: I will be discussing certain aspects of The Lego Movie in this post. Read at your own risk and consider yourself warned! 😉 ]

Hi everyone! I recently saw The Lego Movie and was inspired to write a post about it today. I spent much of my childhood using Lego pieces to build animals, doll furniture for my Barbies and random works of art 😉 , so the Lego brand is certainly a wonderful memory from my childhood. Personally, I think Lego is one of the most amazing toys ever invented, as it encourages creativity at every age – and it is arthritis-friendly! But to be honest, I was wary of seeing this movie, since I felt it would be childish and geared toward a younger age group. Also I was not sure how I could sit through an entire movie animated with pieces who walk stiffly without bending their knees (Hey! Sounds eerily like arthritis, doesn’t it? 😉 ). However, I really enjoyed it and found certain parts very touching. There are many ways to interpret this film, but ultimately it’s a great movie for families to watch together and I highly recommend going to see it if you have ever played with Lego pieces. As someone who thrives on everything creative, I absolutely loved it.

There are some wonderful messages in this movie, one of them being that life is fluid and that the possibilities to create are infinite. In addition, what someone sees as silly and unconventional, may be in fact be useful – it’s all a matter of perception. As someone who has grown up with Juvenile Rheumatoid Arthritis (JRA), a condition which causes joint inflammation, damage and challenges to my movement, I was able to relate very much to these particular points. Growing up with arthritis, I am lucky that my medical team and family members encouraged me to always try. When I was diagnosed with JRA as a child, my joints were inflamed to the point where I was often unable to move or walk. But I still had to try. I tried to walk with walkers, but my hands could barely grip the handles. I would drag myself around the house on my butt to get around, because it was the easiest way to move. In public, I forced myself to walk upright and had a noticeable limp. Though people often stared, it always got me to where I needed to be.

The message I received growing up was that it didn’t matter whether my joints were swollen or if I limped or that I had to wear leg braces or had to take injections – I could still do my lessons and attempt sports and achieve my goals in whichever manner I wanted. I knew that the challenges I faced were not typical to my peers and that knowledge gave me a freedom of sorts. While my teenage counterparts were gushing over magazine covers and attempting diets to emulate their favourite models, I did not feel particularly pressured to follow them, because I knew I had other challenges to worry about and I had to put my energy into making myself healthy and strong to deal with arthritis. I knew that I was on a different playing field than my peers and that I did not have to do exactly what they did. As I grew older, without any sort of guide book or precedent to follow, I realized that I could make up my own rules for living with arthritis. I could try new activities, travel and do things that made me feel happy (legally, of course 😉 ) , even if it was not in keeping with what was “popular”.

As a 20-something year old, I’m happy to say I have been able to achieve many of my personal goals. With treatment, my arthritis is significantly calmer and I continue to work hard at my goals, with arthritis by my side.

So, back to The Lego Movie. In the movie, characters labeled as the “Master Builders” are those creative souls who never read the instructions and who utilize available Lego pieces to get out of sticky situations. They are skilled at using whatever limited resources they may have and turning unlikely scraps into useful, functional models. Likewise, people living with chronic illnesses remind me of Master Builders, because they still find ways to achieve no matter what challenge they may be facing (want to travel to Africa with a wheelchair? No problem. Want to climb a mountain with arthritis? You can do it.) In my readings, I have noticed that children, in particular, are often good at adapting to life with chronic illness – probably because they are innocent and unaware of the perceived limitations (or “instructions”) society has set for persons living with illness.

Another message conveyed by the movie is that we are all capable and hold value, no matter our backgrounds or skills or abilities. In the movie, a prophecy tells of the chosen one who will save the world – the “Special.” Emmet Brickowski is an ordinary instruction-following construction worker, who is eventually told that he is the Special. He is elated and at times believes it. He believes in himself and his abilities….until he is told that the prophecy was fake and there never was a Special. The message Emmet learns is that it’s not just certain people who can hold power or make a difference – every single person has the potential to make a difference. I know it’s a simple, sugary message that might have some of you rolling your eyes at this point, but it’s something I have learned is true.

At a recent doctor’s appointment, I observed a 4-year old boy playing with a 2-year old boy. Neither boy had the use of his legs and could only sit on the ground as they played with the surrounding toys. The 2-year old tried to lift his body onto a children’s car, but he was unable to do so because his legs were too weak. Watching him struggle, the 4-year old boy (who himself could not walk) tried to lift the 2-year old’s body onto the car. When he realized he was unable to do this, he called his mother to lift the 2-year old boy onto the car. I was really impressed with the 4-year old’s ability to realize the frustration of the 2-year old and find a way to help his new friend.

It’s a simple example which shows us that every person has the ability to touch or connect with another person, no matter our age or situation. We can choose to live our lives separately with illness (which is perfectly acceptable), or we can connect and potentially create something pretty amazing – just like Lego pieces haha. 😉 😛

Living with a chronic illness isn’t always easy and at times it is extremely frustrating, isn’t it? But ultimately, I’ve found that it often teaches us to think outside of the box and to find creative ways to achieve our goals. We learn to think like the Master Builders in The Lego Movie, and learn to see potential and possibility where many would think there is none.

Readers, have any of you seen The Lego Movie? What messages did you take away from it? Let me know in the comments below. Thanks! I hope you are all doing well!

Ms. Rainbow


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The little China Girl from “Oz: The great and powerful” and how she relates to JRA

I recently saw the movie “Oz: The great and powerful.” I love fantasy stories with happy endings so I really enjoyed the film, even though it wasn’t as grand as I was expecting it to be. James Franco is also very easy on the eyes, so that’s an incentive to watch too 😉

China Girl, Oz and the monkey

China Girl, Oz and the monkey

[Image source]

 

Without giving away too much of the movie, I wanted to discuss one of the characters, the beautiful little China Girl (voiced by Joey King) and how she made me think of Juvenile Rheumatoid Arthritis. China Girl appears in the fantasy land of Oz. She is reminiscent of another character, a young girl in a wheelchair (played by Joey King) who makes her appearance before the con-man/carnival magician Oz is whisked away into the land of Oz. There is a moment when the young girl in the wheelchair asks Oz to make her walk again, but he is unable to do so because his magic is not real. (I cried. Not so much because of the movie, but because I know this is the wish of so many kids in real life. 😦 )

Later in the movie Oz meets China Girl, a young doll made out of china pieces, whose legs have been broken off. She is crying and wants to walk again. Oz helps her by gluing her legs back together. He guides her to her feet and she wobbles a bit before she is finally able to walk again. (I cried during that part too.)

It’s fitting that China Girl is fragile on the outside but has a strong will and a feisty personality. She is a faithful companion to Oz and is helpful and brave. More significantly, her bright, innocent disposition softens Oz’s selfish nature and brings out his tender side as he feels the need to protect her at times.

JRA tends to make our bodies like that of the little China Girl. If someone shakes our hands too firmly or we somehow get smacked on our joints, we can experience a lot of pain. If we suffer from early osteoporosis, our bones become extra-fragile and we have to be careful when playing sports or engaging in intense physical activities in case we fracture them.

I have to admit that I dislike when people tell me I’m fragile looking, because it implies that I am weak. But I guess they could say worse things, right? Like China Girl, I’ve learned how to be strong on the inside and how to enjoy my life despite having a weakened and delicate body. In reading other blogs of (J)RA patients, I see parts of the little China Girl’s personality peeking through. In spite of painful bodies, I see strength, bravery, determination, wisdom and truly beautiful people.

Keep it up, and stay strong like dear China Girl,

Ms. Rainbow