Saturday, July 18, 2015

Million Dollar Baby

For those of you who think you know me, I'm generally a bubbly person. I tell a lot of jokes, watch a lot of movies, and post about every major pop culture phenomena of the moment. And when this blog used to dominate a large part of my life, I wrote my opinions on every film I saw. It was not an easy task, but one I delighted in, often buying various notebooks with the intention of covering them in Avengers stickers and filling the pages with reviews of the latest thing to hit the big screen. But, a lot of things have changed since then, and in incredibly drastic ways.
First of all, I was fortunate enough to be accepted into Loyola Marymount University's School of Film & Television; one of the Top Five film schools in the country. I worked so very hard for this, so I'm not about to quit bragging that I go to one of the greatest colleges in this nation. Moving to Los Angeles was one of the most difficult and rewarding things I've ever done; in the last nine months alone, I've met everyone from Lena Dunham to Ethan Hawke, directed for the first time, and saw Interstellar on the biggest IMAX screen in the world. It's been one of the best experiences of my life, if not THE best, and I can't wait to return to school next month for my sophomore year.

But, that's not what this post is really about.
This post is about my life, and the incredibly difficult turn it's taken over the last couple of months.
In the Fall of 2013 I was diagnosed with Ehler-Danlos syndrome, Hypermobility, or Type III EDS. The best way to describe this is listed on the Ehlers-Danlos National Foundation website, which states:
"Ehlers-Danlos syndrome (EDS) is an inherited connective tissue disorder ... The underlying features of all forms of EDS is a genetic alteration at the molecular level which causes abnormalities and (weakened) defective connective tissue within the collagen itself ... Collagen is a protein that acts like 'glue', which holds the body together, and makes the connective tissue strong and provides elasticity. Each type of EDS has a different collagen abnormality, but all share, in varying degrees certain manifestations. This faulty collagen causes structural changes to the skin, ligaments, tendons, bone, fascia and eyes. Some types of EDS are characterized by weaknesses in the walls of the hollow organs of the gastrointestinal tract, in the esophagus, the cardiovascular system, uterus, bladder, blood vessels and the arteries."

In more relatable terms, this means that for the last several years, everything in my body has been falling apart. While it was amazing to finally have an answer after all those years of unexplainable injuries and illness, that relief only lasted so long. Most would be hard-pressed to find a physician that actually knows what EDS is, and we are nowhere close to finding a cure. This is something that I have to live with for the rest of my life. And here I always thought that being sixteen going on seventeen meant all I had to worry about were the "fellas [who'll] fall in line / eager young lads and rogues and young cads / [who'll] offer you food and wine."

There are good, normal amounts of time where I can live my life without too much interference from my EDS; but for the last few months I've hit my lowest low with this disease. I wake up every morning in a tremendous amount of pain, my gastrointestinal track doesn't agree with me, and I'm so frail that it's difficult for me to leave the house. This last week has been especially brutal; with the ongoing threat of a possible hospitalization looming over my head, it's hard to find joy in the things that I normally do - reading, hanging out with friends, and most importantly: FILM. The fact that I haven't yet seen Ant Man should be a testament alone to how shitty I feel. 
However, the one thing all of my half-a-dozen doctors tells me is that I need to try and stay positive. To know in my heart of hearts that I'm not going to always feel this way, and that this whole situation is temporary. And while I do agree with them, I have to say the obvious: it is incredibly difficult. It's incredibly difficult to stay positive when you can't ride your horse because of the price your body pays afterwards. It's incredibly difficult to stay smiling when you've just thrown up on a tour bus in Paris in front of your friends and peers because your new medication doesn't agree with you. It's incredibly difficult to stay sane when you can't even hang out with your friends because just existing is so damn hard.

I'm at that point in life where I'm desperately clinging on to the things that once brought me so much joy, and finding that it's not leading me out of this tunnel. I literally just ran from my computer as I was typing that last line to throw up the Advil I've taken in the hopes of calming this raging fever I've had for days. I didn't even want to take it in the first place, as I know I've damaged my liver with the amount of Ibuprofen I've taken over the last too many years. But as I've said, I've become desperate.

Normally, I don't like to tell people too much about my personal life. I don't want anyone to know what I consider any private information about me because my ability to trust anyone has been tested to the point of it just being easier to build a very gigantic wall. So why am I suddenly diverging all of this personal information, you ask? Because I need to do SOMETHING. Something that makes me feel like I'm still a functioning member of society, even if the only way that I can presently do that is from the recliner in the family room.
I think of myself first and foremost as a writer. That's all I've done my whole life, and that's all I will continue to do. It's powerfully therapeutic to put yourself out there when you feel as though life has taken all it can from you.

If you're still reading this, THANK YOU. Thank you for investing your time to understand my story; for even caring the tiniest bit about what I have to say. This blog is going to be about more than film from now on - I mean, it's called "Life" of a Future Oscar Winner, isn't it? Doesn't that mean it shouldn't only be about the films and filmmakers that impact me, but EVERYTHING that does? How are people going to know about my life before I've won my Oscar if I don't even talk about it?

Well, for the time being, that's what I'm going to do. I'm giving myself a new purpose, a new challenge; a new reason to fight this fucking syndrome that never quits. I'm going to write my ass off, because I know this is where I shine the most. While I might be the sickest nineteen year old I know, I am also one of the strongest, and I'm going to tell my story whether you like it or not. Because this is my life, and if I want that Oscar, I need to take the reins away from my EDS and into my own hands. 
As Morgan Freeman said in Million Dollar Baby, "Sometimes the best way to throw a punch is to take a step back." So life, if this is the next challenge, if this is my "step back," then you better be ready. Because I'm about to throw my punch.


  1. You are truly an inspiration. Keep fighting Lucy, you are going to win this. And I can't wait to cheer you on as you step on that stage to accept your Oscar.

  2. Thank you for sharing, Lucy. I was sick at 19 and spent most of my twenties in hospitals and doctors' offices. You have been able to put into words what I have felt so many times. I'm sorry you're not doing well right now; there were many times I had to tell myself I wasn't always going to feel that way. Thank you for being strong and courageous to talk about your journey. Thinking and praying for you. ((Hugs))

  3. Lucy, just seeing this today. Keep fighting, and know that while there may not be many people with your exact problem, there are many fighting as you are. Perhaps you need a group of all with similar circumstances. Chin up, you're doing well, that Oscar is in your future.