Helping women with chronic illnesses
ChronicHealing.com

Inspiration

Meet Emily:

Emily

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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13 comments

1 YayaNo Gravatar { 11.22.09 at 7:56 am }

Wow.
Emily, this video is beautiful. I remember it from when Jeanne posted it awhile ago and it spoke to me. It gave me comfort. So often people forget I even live with a chronic illness. I look fine on the outside. They just don’t get it when I cancel on events, or don’t feel like answering my phone because I’m simply too exhausted. I’m so sorry for the pain you live through, but you are also inspirational. Thank you.

Jeanne,
Beautiful guest poster.

Alicia
.-= Yaya´s last blog ..Help My Wife =-.

2 JeanneNo Gravatar { 11.22.09 at 4:54 pm }

Alicia,

I knew you would like this. I remember how moved you were the first time I posted this video.

Thanks for letting Emily know how her video (and the back story) made you feel.

Peace,

Jeanne

3 EmilyNo Gravatar { 11.23.09 at 3:52 pm }

Thanks for the kind words, ladies. I appreciate knowing that my story has impacted someone else in a positive light :)

4 JeanneNo Gravatar { 11.23.09 at 7:12 pm }

Emily,

Thank you again for guest blogging. I spoke to a fellow blogger yesterday who is going through a very trying time. She looked at this post up to and including the video but stopped reading because she was in tears. I encouraged her to go back when she can to read the rest of the post because, as you know, she saw the saddest part and missed out on the most inspirational part! This post has gotten a fair amount of traffic. :) For whatever reason, most of the people visiting are not leaving comments but I have learned that this just happens with some posts. In fact, I once heard that (for blogs in general) only about 10% of the readers of a given blog post end up leaving a comment. So, I just wanted you to know that people are reading it because I see the traffic coming in. Your story is helping people. :)

Jeanne

5 patriciaNo Gravatar { 11.23.09 at 10:13 pm }

Emily I truly liked the creative video and your resulting rise into a full life -good for you and the release you received from your putting the words and actions out into the world..Thank you

Jeanne,
A very nice post and good for me to read and enjoy – contemplate. I need to remind myself about my good work and energies all the time as they are not very visible
.-= patricia´s last blog ..Harvest Potluck UNICEF Fundraiser =-.

6 Dorothy StahlneckerNo Gravatar { 11.24.09 at 7:21 am }

Oh there are so many people who I love that suffer with chronic pain one is my dear friend Bev who has RA is always in pain and takes horrible treatments to help her be able to make it through the day. I so understand all of your post and video and I when I light my candles there will also be one for you…my very best and thank you so much for this post and video.

Dorothy from grammology
grammology.com
.-= Dorothy Stahlnecker´s last blog ..Family or Friend Fights can hurt so much forever.. =-.

7 JeanneNo Gravatar { 11.24.09 at 3:15 pm }

Patricia,

Emily’s video and the story behind it really are special, aren’t they?

I was just reading your UNICEF fundraiser post. What a great way to raise money. :)

Jeanne

8 JeanneNo Gravatar { 11.24.09 at 11:36 pm }

Dorothy,

Sadly, there are an enormous number of chronic pain patients out there. Your friend Bev might want to check out the Living It, Loving It blog. Its author, Lana, has rheumatoid arthritis. I’m sure your friend would find her blog helpful. Emily’s video has touched so many. Thank you very much for the thoughts and kind words.

Jeanne

9 Melissa RalstonNo Gravatar { 11.25.09 at 2:15 am }

Emily – as you said so yourself, your video captures the bag of emotions that us who are chronically ill feel each day. I have been at the low and remember well what it is like to live with not only our illness, but the emotional havoc it also creates. To climb the mountain means that you will never be defeated by the suffering. We might figuratively climb several mountains in our lifetime, as we learn that we are not our illness, that it is only a fraction of who we are.

Jeanne – Great Post as always!
.-= Melissa Ralston´s last blog ..A Chloe Story =-.

10 JeanneNo Gravatar { 11.25.09 at 10:47 am }

Melissa,

Ditto to everything you said to Emily!

I know you are going through a very difficult time now and you feel like you are climbing those figurative mountains every single day with everything you have going on! Please know that you are in many people’s thoughts. I wish I could wave a magic wand and make you feel better. Thinking of you!! :)

Jeanne

11 Pain-blog Carnival, December 2009 | How To Cope With Pain Blog { 12.30.09 at 12:29 am }

[...] Chronic Healing inspires with a friend’s video about life with chronic illness. [...]

12 PeggieNo Gravatar { 12.31.09 at 12:44 am }

HI EMILY! Thank you 4 such a beautiful video! I,too,am a chronic pain sufferer (RSD GOING ON 9 YRS. NOW)I have always had a special place in my heart for horses,I believe they r one of God’s most beautiful creations,so as I read ur blog & love of horses,at first I didn’t think I’d b able to handle the video……we always surprise r selfs,rgt? The video was magnificent,the horses u choose were just gorgeous.I played it 2x’s,once watching & then listening while imagining I was 1 of those horses,just running thru the grass,sooooooFree. I will use this imagery again & again.I think they will also help me during my bio-therapy too. AGAIN THANK YOU EMILY,I felt & feel everyone of the emotions u portrayed & gave us in that video. GENTLE HUGS ,~PEACE~ & ALL THE BEST IN THE NEW YEAR!! Peggie ;-)

13 JeanneNo Gravatar { 12.31.09 at 1:13 am }

Welcome Peggie!

Emily was a guest blogger here on Chronic Healing and related the story of how she made this inspirational video beautifully. If you are interested in contacting her directly with your feedback, there are multiple links in this post that will enable you to do that.

Thank you for sharing your feedback here. You may have seen this post featured on the How To Cope With Pain Blog Carnival? I know they just featured this post. In any event, I found this video very moving too. That’s why I asked Emily if she would be so kind as to write about it here and she graciously agreed to do so.

I have lived with chronic pain since the age of 13. I recently turned 41. Learning how to hope with chronic pain can be incredibly challenging, as I’m sure you are all-too-aware living with RSD!

I believe the adversity of living with chronic conditions (of which I have many) makes us stronger, though, and I know I have met some outstanding, amazing, caring people because we share chronic illness/pain as a common bond.

Please do stop back to visit as we talk about all sorts of chronic conditions here. One of the bloggers I follow in particular has RSD and you’d probably enjoy her blog too: Rellacafa. Her writing is excellent and I highly recommend checking it out.

I myself had nerve-cutting surgery in January 2008 as a “last resort” to treat horrible pain. Sadly, the surgery didn’t go as planned and I had phantom pains set in after surgery and I have permanent nerve damage. I do not have an official diagnosis of RSD but one of my health care practitioners brought it up as a possibility. All I know is that leg hasn’t been the same since. (It’s a long, long story).

Anyway, thanks for stopping by here and sharing your feedback about Emily’s video and the inspirational story she wrote to go with it.

Have a peaceful and happy new year!! :)

Jeanne

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