Thursday, October 23, 2014

“Words and Pictures”: What It Means To Love And Be In Love When You Have RA

I recently rented and watched “Words and Pictures”.

For those who don’t know, “Words and Pictures” is a film starring Juliette Binoche and Clive Owen.  In the film, Juliette Binoche’s character has RA.

According to the Arthritis Foundation, this may be the first movie ever to feature a main character that has RA (

I’ve never seen a portrayal of RA like this before.  It was so accurate, almost too real.

There were outward manifestations of RA, such as the use of a cane and crutches, and wrist guards.

There were also the more inward manifestations of RA.  Watching Juliette Binoche’s character fight internal frustration and what she was not able to do, or having to call her sister to come help her undress, really brought RA home. 

Juliette Binoche’s character is shown having difficulty undoing buttons.  At one point, she takes out a mallet to open a prescription bottle, sending pills seemingly everywhere. 

Haven’t most of us with RA been there before?  I remember one time, I was ready to throw a jar of pasta sauce at the wall because I couldn’t get the lid off of it.   

At times, I found it difficult to watch Juliette Binoche’s character struggle with some of the same things I struggle with.  It reinforces the idea about what healthy people take for granted in their everyday lives, and what many of us with RA lament that we can no longer do, and long to be able to do again. 

In the movie, though, Binoche’s character, an artist, is forced to adapt her tools and instruments so that she can continue to paint, despite not being able to hold a paintbrush with her hand.

This adaptation is pretty amazing to watch. 

In the movie, it is made abundantly clear that Jack Marcus (Clive Owen) loves Dina DelSanto (Juliette Binoche), RA and all.  They are both slaves to their art, and they are both rough around the edges.  Both of these characters are deeply flawed, and at times a bit frustrating to watch.

There was a point in the movie that I found particularly poignant.  The first time that the two characters are becoming intimate, Juliette Binoche tells Clive Owen he has to be careful of her body.

When Clive Owen told Juliette Binoche, “You just have to tell me what hurts, where, and how much,” I cried.  I literally shed tears. 

To me, that was the biggest lesson in the movie.  Yes, it portrayed a main character with RA for possibly the first time ever. 

But it also underscored that you can love and be loved despite having a chronic and debilitating illness like RA. 

The San Francisco Gate called the movie “odd and thought-provoking,” and it truly is both of those things (

It’s also kind of amazing to see someone like me in film.  That so rarely happens, and the power of that shouldn’t be underestimated. 

I don’t think this movie is for everyone.  The story felt a little clumsy at times.  And I watched it alone, which was good.  I don’t think my boyfriend would have liked it.  And I’m not sure that someone who doesn’t have RA can really understand or comprehend or appreciate the significance of the illness, despite the fact that this film features a  main character suffers from it. 

Wednesday, October 15, 2014

Debts I Can Never Repay

The last two months have been some of the most difficult of my life.

Learning to live to without someone so close and important to you is truly unbearable. But there were bright spots of light in the darkness, and I am so grateful for that.

As I begin to come out of the fog of grief and sorrow, and re-orient myself to the real world, I realize that there are people I formally need to thank for their help and support.

First of all, the many groups that have come to feel like family. I am grateful to my CreakyJoints family, my Health Union family, my Hospital for Special Surgery family, my Medicine X family, my Sarah Lawrence Health Advocacy family, and my virtual/blogger family.

I have to thank my wonderful friend “A” for providing invaluable advice for dealing with law enforcement, and for literally driving across the State of Michigan to attend my dad’s funeral.

Three weeks after my dad died, “A’s” dad died. I was in California for Medicine X, so I was unable to attend her dad’s funeral.

While I know “A” harbors no anger at this, it is something that I have difficulty reconciling.

In my mind’s eye, I always imagined that when one of her parents died, I would be there for her, in person, no matter where I was living or what I was doing at the time.

Obviously, I never anticipated that she and I would lose our dads three weeks apart, when we were both barely thirty years old.

My friend D, who is always there for me, was incredibly supportive, especially considering she was preparing for a cross-country move. Thanks for letting me cry in public as I recounted the many events that transpired before, during, and after this ordeal.

To my friends “E” and “R”, who were there and available through it all, I am so appreciative.

I also appreciate “R” for sharing her son with us. His happiness and innocence provided some much needed light.

For “J”, who drove all the way from Ann Arbor twice, your presence was deeply felt and much needed.

For “C”, who, after all that you’ve been through, has always been there with me. I am sad that I had to join this club, but I am forever grateful for your strength and comfort.

If there is one thing I have learned from this experience, it is that the people you surround yourself with are so incredibly important.

I am kind of impressed with myself that through the years, I have managed to collect so many amazing friends along the way, who truly proved how amazing they are in helping me through this difficult and unexpected event in my life.

It’s not just that they were there when I needed them, but they were there to listen, and to cry along with me.

My parents have always embraced my friends, and I know that many of them had come to love my dad, even if they only met him in person on a few occasions.

To my boyfriend, I couldn’t have made it through this experience without him.

All of my other family and friends that called, wrote, sent text messages and emails, or were physically present in some way, thank you.

To those that I have left out or forgotten, please know that in small and big ways, I am grateful for the amazing love and support that has surrounded me.

When I got sick, I felt like I became a taker and not a giver. I felt like I was taking more from my friends than I was giving back to them. And I guess there are many times in our lives when this is the case, and we take more than we can give. I hope that someday, I will be able to adequately give back to the people I have mentioned here, who have given so much of themselves for me.

As I mark two months since my dad died, I continue to be hit with the tremendous loss and what it means for me life, but I also am reminded, in big and small ways, about how much (and how many) people I still have.