Enthusiast Spotlight – Hello Christine Spencer!

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Grokker Enthusiast Christine Spencer

The Grokker community is brimming with inspiring people that share a passion for cooking, yoga, and fitness. Today we are thrilled to launch our Enthusiast Spotlight series where each week we introduce an enthusiast to the Grokker community. Come join us to get to know your fellow enthusiasts!

This week I spent some quality time with Christine Spencer, one of our most passionate yoga enthusiasts. Christine was an active participant in our True North contest and has spoken openly about how yoga has helped her manage a chronic disease. So, take a few moments to join me in getting to know Christine!

Tell us a little about yourself Christine!

I grew up in the suburbs outside Philadelphia with my parents, older brother, and younger sister.  I always excelled and had many friendships; I excelled in art, writing, and even became captain of my high school swim team. Even though I may not have been blessed with the best genes, I’ve come to believe I’ve received the some great characteristics from my parents.  Having a great sense of humor, a thirst for knowledge and a passion for experiencing all aspects of life have been my bricks for building a happy and enjoyable life.  These might seem like normal traits, but for living a life in constant pain with Ehlers-Danlos Syndrome and Fibromyalgia, I’m doing pretty good.

You have been very open about your struggle with Ehlers-Danlos Syndrome. What is EDS?  

Ehlers-Danlos Syndrome is a debilitating, inherited connective tissue disorder that affects every aspect of the person’s life.  With six distinct types, EDS more often affects one’s joints and blood vessels. In some cases, it can more seriously affect one’s organs, possibly leading to an unfortunate early death.  There is no known cure for EDS.  For many, leading a depressed, painful, and medicated life seems like the only option.

Tell us about the syndrome and your experience with it?

Though I was diagnosed at 13, my symptoms grew much worse just before I went to college.  My pain became severe and constant and I realized I was unable to live a normal life (go to college and work 40 hours a week), so I did the best I could with what I had.  I began seeing a doctor, was prescribed a cocktail of medications, and began using the internet to try to find a better solution.

What role did the internet have in opening up new options for you?

At the time, MySpace was the first large social networking site.  I created the first Ehlers-Danlos Syndome online support group on MySpace where I coined the term “EDSer,” now a popular term used to describe someone diagnosed with EDS.  At the time, the group seemed like “the best thing on MySpace.” There was finally a place where we could all come together and share; however, we quickly realized that none of us had any real answers.  One day, I just dropped out of the group and never returned.  It was just too depressing to visit a page that was going nowhere, filled with endless complaints.  My enthusiasm for the internet ended.  My reliance on medication increased.  A few years passed and I felt like I was at my end.  I was shutting off from the world around me, unable to find an ounce of hope.  Luckily, my thirst for knowledge kept me on the right path as I was reading a growing number of books on consciousness and self-improvement.  It was almost as if I was being guided to take these steps forward.

How did you first discover yoga and how has it helped you manage your disease?

The term “yogi” was appearing in every book I was reading. As I searched YouTube for some decent yoga videos, I didn’t find much.  In hindsight, the little I found was not ideal for someone with EDS, but it got me through.  Practicing every day to the same video, I felt compelled to share my realization that yoga was helping my EDS so I started the Facebook page “Yoga for Ehlers-Danlos Syndrome & Fibromylagia.” I didn’t know much about yoga. I had more questions than answers. But the one thing I did have was the experience of transforming myself from helpless cripple to an empowered goddess through yoga! Over the course of a couple of months, my personal account of my spiritual transformation flowed into a ten-part story which I later titled: “Yoga4EDS: A Spiritual Journey of Healing.”  As I shared through my heart, a newfound confidence grew.  I had finally found some answers I was happy to share, so I created the Facebook page “Gluten Free Living With Ehlers-Danlos Syndrome & Fibromyalgia” to bring awareness and guidance. Since my story “Yoga4EDS: A Spiritual Journey of Healing,” I’ve been sharing yoga videos to a group of over 600 like-minded EDSers.  To look back on the journey brings a smile to my face.  I was scrambling through YouTube videos just to be able to share a few minutes of a yoga clip (with my list of modifications and suggestions).  As time went on, I became a pro at finding and commenting on videos that seemed suitable for people with connective tissue disorders; however, I felt like these videos were not enough.  I came across yoga subscription pages, but I wanted everyone in the group to have the same opportunity.

How did you find Grokker?

I stumbled upon Grokker while looking for yoga videos online.  Finally, it was like everything was coming together!  I could easily search gentle, hatha, restorative, yin and qigong videos.  Not only were the videos free, but they were amazing!  I thought, “This is too good to be true!”  As I used the site more and more, I was impressed with how great the instructors were.  Instantly, I enjoyed the expertise on alignment from Ashleigh Sergeant.  The doors began to swing open to experts.  I continued with my natural pace of sharing my favorite yoga videos with those who need them the most.

What is life like today after your long journey?

As of today, I still wake up and unroll the mat every single morning.  Any level of stress that may have surfaced from not being able to find the right video has vanished.  Grokker.com has become my go-to website for their beautifully crafted and intrinsically healing videos.

The stigma around EDSers doing yoga still exists: “Why stretch?  I’m already too stretchy!”  Yoga does not stretch the joints, it stretches and strengthens weak muscles to provide stability for the joints.  This alone played a major factor in my recovery, but more importantly, yoga gave me my life back.  Within months of practicing yoga, I established the mind-body connection, learned how to activate the calming, parasympathetic nervous system, started to heal my fascia, increased my circulation, and centered my mind so that I am now able to deal with my constant day-to-day pain.  I know I cannot change people directly, but the more I work on myself, the more I shine for others to see it is possible to lead an enjoyable life while having a chronic illness.  So with my heart first, I’m forever moving forward.

Finding yoga has been the most transformative experience of my life, so it brings me great joy to relive this experience on a daily basis.  I’ve had passions before, but nothing compares to this.  As I continue on my journey, I’m thrilled to be living in the Age of Information.  Every morning on Grokker I’m able to absorb new insights from different yoga instructors from all across the world.  That’s amazing!  So for now, I’m enjoying traveling down this path of self-discovery while experiencing it simultaneously with others. Thanks Grokker!

Mark Luskus

Mark Luskus is an outdoors fanatic, current events junkie, and soon to be medical student. When he's not watching Grokker videos, he loves camping, listening to NPR podcasts, and riding his motor scooter around Berkeley, California.

4 Comments
  1. Wow Christine! Your story is so inspiring! Thank you for sharing so openly of your journey. You are clearly unstoppable– and with a spirit so bright, you are a light to others as well!

  2. Christine, this was such an inspirational story! I love what you said about the mind-body connection – I so strongly believe that our minds are so much stronger than we know!

    1. Hey Lauren,

      Thanks for reading my story!

      You know, I was just thinking the same thought earlier today: “I so strongly believe that our minds are so much stronger than we know!”

      Yoga has been such a great tool for quieting, as well as strengthen my mind.

      Thanks for commenting!

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