Here is a link to an interview with Laura Hillenbrand, the best selling author of the book, Seabiscuit. She has suffered with chronic fatigue syndrome for over 24 years. The New York Times interviewed her last year about the release of her new book, Unbroken, but during the interview they spent a lot of time discussing her cfs. It inspired me. You can read that article here:
Today, I am using Laura Hillenbrand’s way with words as my inspiration. It’s not so much spiritual inspiration as it is just life inspiration. Her cfs story is so similar to mine. Her way of using words to describe cfs were inspiring to me. I found myself reading this article and saying, YES, that’s exactly how I feel! Now, why can’t I say it that succinctly when I am questioned about my illness? Perhaps it is because she is a best selling author and words are her life! Ya think? 🙂
I encourage you to go read the entire article, but if you don’t have time, let me quote my favorite part:
It’s exasperating because of the name (cfs), which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb. This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.
Dismissed, ridiculed, and labeled lazy. Can anyone relate to that? I sure can. I’ve always hated the name Chronic Fatigue Syndrome because in today’s society everyone is “fatigued”. I was trying to explain my illness to someone years ago and they snickered, “I think I may have that because I am tired all the time”…followed by laughter. I felt belittled. I don’t even tell people about the cfs anymore. If and when it comes up, I prefer to just use the word fibromyalgia because then the hurtful, judgmental, labeling comments are a little less severe. (Notice I said less severe because I know that this same type of thing happens with the word fibromyalgia too.) In the UK, they’ve stopped using the words chronic fatigue syndrome and instead have labeled it myalgic encephalomyelitis or ME for short. That name is starting to catch on in USA, but the illness is still primarily known as cfs of cfids.
I am inspired by Laura because she is choosing to use her platform to spread awareness about cfs. Obviously this is something she has wrestled with and it is something I struggle with too. I don’t necessarily have a platform, but I do shy away from cfs/fibro awareness because of the vulnerability that comes with it. She has been hurt before by drawing attention to her cfs and so have I. She is using her voice to educate, perhaps a lesson I can learn from her.
I also admire that she continues to pursue her passion in spite of her illness. Easier said than done for most of us, but I believe that part of taking care of ourselves on this journey includes embracing the talents/passions that God gives us. It would be very easy to abandon them, but that would be neglecting a portion of our souls – a part of who we are and the way God made us. I hope and pray that illness doesn’t completely rob you of these gifts and that you find a way to keep them in your life. For Laura, it is writing. For me, it is singing. Yes, much, much less than what I would like to do, but still a big part of who I am. What is it for you?
I thank Laura for stepping out of her comfort zone to speak publicly about cfs. Many diseases have a celebrity name attached to it to bring awareness. I think it is time for cfs and/or fibro to have someone like that. Laura Hillenbrand just may be that person for us.