ALS (and More) Ice Bucket Challenge

Last weekend I was nominated on Facebook for the ALS Ice Bucket Challenge. 

For those of you who don’t know what that is, it’s a campaign to raise donations and awareness for ALS (Amyotrophic Lateral Sclerosis), which today affects approximately 30,000 American’s.

ALS, also known as Lou Gehrig’s Disease, is an illness similar to the more well known motor neuron dis-ease Multiple Sclerosis.  In the early stages, symptoms of ALS include muscle cramps and weakness, tightness and stiff muscles, difficulty with coordination and slurred speech.  It can quickly progress into difficulty breathing and swallowing that can lead paralysis and eventually death, with the life expectancy ranging between 2 and 5 years from onset of symptoms. 

I had seen this campaign going around for about a week before I was “nominated” (AKA told by someone that it’s my turn to either record a video of myself throwing ice over my head within 24 hours of being nominated or donate $100 to ALS research).

At first I thought, “Oh that’s pretty cool!  Maybe people will actually learn more about this debilitating illness.”  

But as I saw it go around more and more, I realized that the essence of the campaign had turned into yet another social media sensation, a new fad and another opportunity to jump on the bandwagon.  I started seeing girls in their bikini’s and guys with their shirts off, not even mentioning the fact that the Ice Bucket Challenge (IBC) was to raise awareness about ALS.

Then, when my friend nominated me, I found myself with a whole lot of resistance to participate in this campaign.  

It wasn’t that I don’t believe in raising awareness about chronic illnesses (anyone who knows my personal story knows that I’ll talk about my experiences freely to educate and enlighten others).   It wasn’t even about not wanting to pour ice cold water on myself (I’ve been known to take a 10 minute ice bath after rigorous workouts). 

So, I found myself wondering, “Where was this resistance coming from?”

I decided to give myself the space to sit with it and figure out the root cause of this before I even considered participating in the challenge.  I didn’t want to be another one of those people who threw freezing water on myself just because someone told me to.  And that 24 hour thing..  When have I ever been one to follow rules?

I figured me taking the time to do research and critically think about this situation would be of more value to the world than following blindly in the crowd’s footsteps.

When I was meditating on this strong resistance energy I was experiencing, I remembered a fact I had heard years ago in the documentary about Lyme Disease, “Under Our Skin.”  The fact I remembered was that there is a strong link between ALS and Lyme Disease.  When I came out of the meditative space, I did some research.

Lyme Disease is caused by a bacterial called Borrelia burgdorferi.  Lyme can effect any of the 11 organ systems in the human body, and when the bacteria begin to invade the nervous system, it’s known as neuroborreliosis.

One study I came across found that 9/10 patients with ALS were in fact positive for Lyme Disease, with symptoms strikingly similar to diagnosed neuroborreliosis.  When given antibiotics, patients with perviously diagnosed ALS found a lessening of their symptoms.  New research is showing that ALS and MS are oftentimes not a disease in and of themselves, but rather symptoms of a deeper, less studied disease: Lyme.  But, most people don't know this, which is why I've felt called to talk about it here.

The purpose of the ice in the IBC is to imitate the shocking and painful symptoms that an ALS patient experiences, to bring awareness to the daily struggle they face, if even only for a moment.  As someone who has had daily symptoms of neuroborreliosis for over a decade, including migraines, sleep disturbance, and chronic muscle pain, I suddenly realized why I had so much resistance to the concept of the IBC:

This campaign is raising awareness and spreading the message of illness in a way that gives the responsibility of our individual healing process to an entity outside of ourselves.  When we think outside the “box” that western medicine has given us, we find connections and deeper meanings behind illness than we’ve ever before let ourselves experience.

When we choose to step outside of the realm of conventional medicine and its limited perspective research, we begin to explore a whole new way of viewing disease, illnesses, and health itself. 

Let me explain a little further. 

When I was in Peru last year, I learned how pain is actually a message from our body telling us that something in our world (internal or external) is out of alignment.  Conventional, western medicine teaches us the "myth of the medical gods"; that medical professionals know more about our bodies than we do, and that we must listen to their advice in order to be cured.  We are conditioned to not trust ourselves and our intuition about what may be going on below the surface of the physical manifestation of pain.  This leaves no room for personal exploration of underlying causes of pain, illness, and disease or for spontaneous, miraculous healing to occur. 

After years of deep introspective work and healing, I’ve come to learn that there are many layers to the pain and illness that I still experience, and that healing is not a quick fix, it’s a process.  The healing process involves peeling away the layers of untruth, of misalignment, of inauthenticity.  I don’t know if there will ever be a day that I don’t experience pain, but I do know that the pain I experience has a deeper purpose, a higher meaning than the conventional idea that my body is failing me.  I am learning every day more and more about this wisdom that my body holds, and I am learning to listen to it’s messages. 

Whether or not all ALS and MS are caused by the Lyme bacteria, the fact is that the "normal" methods of research (typically funded by pharmaceutical companies) are leaving out a large portion of information that could be helpful from those experiencing chronic pain and illness.

The most famous person alive today with ALS is the world renowned physicist, Dr. Stephen Hawking, who has lived with the illness for over 50 years.  That’s 10 times the length of the high end of the doctor’s prognosis!  Although he is almost completely paralyzed and uses a speech device to communicate, he said “F*** you!” to Lou Gehrig’s when he was given two years to live in 1962, and has continued to revolutionize science for the next half a century.  That’s a pretty amazing example of the mind-body connection, if you ask me!

How did he do this?

I’ll let him tell you:

“Remember to look at the stars and not down at your feet.  Try to make sense of what you see and wonder about what makes the universe exist.  Be curious.  And however difficult life may seem, there is always something you can do and succeed at.  It matters that you just don’t give up.” — Stephen Hawking

Keep exploring.  Keep questioning.  Give yourself the space to find your own answers.  And no matter what, always keep going. 

After all that, I decided to accept the Ice Bucket Challenge, not only to raise awareness about ALS, but also about similar chronic illnesses such as MS and Lyme.  I also did it as a wake up call to the world to recognize that we are the only ones who can truly bring healing to our personal experience and that when we begin to take back our inherent power and responsibility to do so, true individual and global healing will occur.