When I began blogging in June 2008, I found a powerful video and contacted Emily (who had posted it). Those of you who read my previous blog, “Jeanne’s Endo Blog”, may recall seeing the video posted in its sidebar. Emily created it and graciously agreed to guest blog here about it. With 2,727 views on YouTube, this video is obviously resonating with many people. Emily has fibromyalgia and ME/CFS but I believe that just about anyone dealing with chronic illness/chronic pain can relate to this video. I appreciate her taking the time to write about how this video came to be.
Emily’s “project”… Behind the video:
Hi. Some of you may know me as caiquecrazy from Jeanne’s Endo Blog. Others may know me as the user booknhorsefreak, from YouTube. Two years ago, I published a slideshow on YouTube titled Don’t Judge – The Saga of Chronic Pain. It was a little pet project I put together one day as I was sitting home, reading a fibromyalgia/chronic pain support group site, and feeling increasingly sorry for myself. I was at a low point in my life – I was feeling desperate, like my life was slipping away and I was being held captive by something I had no control over – chronic, debilitating pain.
I had found some letters that were titled ‘Letters to Normals’ that outlined the rage, the pain, the rejection, and the frustration that people who suffered from chronic pain had written in an effort to explain their situations to the ‘normals’ – the healthy ones. I sat for hours sifting through notes and letters, crying in relief that someone else got it. That the person who had put pen to paper actually understood my point of view. This is what brought around the idea of the video.
I have a background working with horses. Before the pain came to be a constant part of my life, horses were my home. I worked on a ranch in exchange for riding lessons, and took refuge in their strength. I am small in stature, and being able to work in unison with an animal that could easily overpower me taught me lessons in strength, emotion, steadfastness, and partnership. When at first I began to experience pain, I pushed through and continued to ride my beloved equines.
However, I began to lose my ability to ride safely – my balance became off, my pain threshold lowered, and I no longer had the strength to boost myself into the saddle. After a while, I simply stepped away from horses – not being able to ride was like tearing my heart out. I learned to watch on the sidelines and observe the body language of horses – it thrilled me to watch them in action, and I learned to pick up on the small things that riders generally don’t pay attention to. I was able to float into a dreamland of watching and waiting, fueled by my desire to one day incorporate horses into my life, whatever the price.
As I made this video, I was using an electric scooter to get around my school campus, because my manual wheelchair was too hard to maneuver with my failing rotator cuffs. I was going to the doctors religiously, and they had me hooked up to a constant tens unit in an effort to help relax my muscles and relieve some of the pain. I isolated myself quite effectively from the normal crowd, and withdrew into my world that was full of books, daydreams, and computers. I became increasingly depressed and frustrated with my situation as I silently celebrated my 6th year of constant chronic pain. At the time, I was only 18 years old.
Despite not having worked with horses for about 3 years, they still galloped across my dreams and stamped their way into my heart. They were a sort of muse for me, every creative piece I wrote or dreamed was centered around something equine. I often wished they could gallop away with my fears, and replace my emotions with joy and peace. When I sat down to create this video, I wasn’t trying to be creative or even symbolic – I was trying to put into words the thoughts that were going around my head.
I made a list of words that I use on a regular basis to describe my condition. Suffering, pain, sadness, despair, loneliness, anger, hopelessness, defeat, broken, lost, anguish. I melded these words into silent riders, situated on horses – words to be taken away and carried into the atmosphere, never to be absorbed by me again. Through my tears while making this video, I derived a mission statement. I boldly stated that ‘I will not be defined by my pain’. From there – the video took flight.
I made a rider crafted out of the word freedom, and placed on that on a cantering horse. Following that rider are images of wild herds running free – the best site in the world, the site that never ceases to soothe my soul. The rest of the images are riderless – they need no riders to saddle them with the weight of the world. They are free.
I set this all to a song called “Wild Horses” by Natasha Bedingfield.
The lyrics are well suited to the video, saying:
“I see the girl I wanna be
Riding bare back, care free along the shore
If only that someone was me
Jumping head first headlong without a thought
To act and damn the consequence
How I wish it could be that easy
But fear surrounds me like a fence
I wanna break free”
[Editor's Note: See this link for complete lyrics to Wild Horses by Natasha Bedingfield].
I hastily submitted the video to YouTube before I lost my cool and backed out. It’s been up ever since, and for the past 2 years I have been receiving thank you notes from various viewers, thanking me for putting into words and pictures what they could not begin to explain.
A silly little imaginative whim in my mind formed into an outlet that helped me bridge some ties to the chronic pain community.
Emily recently traveled to Nicaragua
Since that video, much has changed. Yes, I do still suffer from pain. Yes, I do have restrictions and limitations on my abilities. But I don’t let it stop me. I’ve stopped using my wheelchair and scooter – they branded me more then I could ever want. Instead of staying home to bury myself in another book, I got involved in the community. I push myself to my limits on a regular basis, and surprise myself when I sometimes surpass what I believe even I was capable of. Recently I got back from a 10 day mission trip in the heart of Nicaragua. I hiked miles around a volcanic crater; something that if you had told me I would do 2 years ago, I would have laughed. Sometimes, I go and re-visit the pictures, because I can’t believe it actually happened. I paid dearly for that hike – but I refused to miss out on a once in a lifetime experience. I chose to live life, and happily take the consequences that came with it. As a result, I have memories that even on the most pain filled day, I can look back on and remind myself of what I accomplished.
Emily literally climbed this mountain…………
I hope you enjoyed the video. I honestly can’t say I enjoy it – it reminds me too much of what I once was, and how low that time of my life was. However, it also brings me comfort – whenever I receive a ‘thank you’ letter from an anonymous reader, letting me know that my silly little pet project helped them, it brings a smile to my face.
I’m glad I can provide words to others, the same words that for so long I attempted to elude. Now I embrace those words with open arms, and I set them free.