I Used To Have An Autoimmune Disease… But Then I Changed My Mind.


When I was 15, my parents took my brother & I to the Pine Ridge Indian Reservation in South Dakota for the summer.  We camped on sacred land on the reservation while my parents each did a Vision Quest.  Part of the preparation was the Native American Sweat Lodge ceremony.  A man who had been struck by lightning (who was magical as they come in my book) told me that if you have poor vision you would see things in the Sweat Lodge.  Now, I have really bad eyesight, and this did NOT sound like a good idea to me!  No way did I want to see spirits in the sweat lodge!  So I sat outside by myself while everyone else, even the little Indian children, went into the sweat.

It was during this time that I began to notice strange things happening to my body.  I began to fall.  A lot.  I my handwriting was getting messier & messier because I couldn’t hold onto the pen.  When we got back home, I was slowly demoted down to the slowest lane at swim practice. I had trouble getting out of the swimming pool.  I though it was because I had been on vacation, and needed to work out more.  At school, I went to the office to tell them my locker wouldn’t open, but the combination wasn’t wrong – I just couldn’t lift the handle.  No one knew what was wrong.  My mom took me to all kinds of specialists.  At one point they thought I had MS.  I had to learn to be funny and make people laugh so (hopefully) no one would notice how much effort it was taking me to get out of the pool, or walk down the stairs, or button my jacket.

It was so disturbing because no one really knew what was going on.

Finally someone recommended I see a neurologist.  He asked me to sit on the floor & then stand up.  “Try to walk on your heels,” he said.  I couldn’t.  He tested my reflexes.  didn’t have any.  And then he said the magic words…. “I think I know what’s going on.”  He ordered at spinal tap & a nerve conduction velocity test.  These tests revealed that I had an autoimmune disease called Guillian Barre – also called Ascending Paralysis.  Basically, your immune system thinks that the myelin sheath that surrounds your nerve endings is an invader, and destroys them in an ascending pattern.  There are 2 types chronic and acute.  They said I had the chronic type because it took so long to develop.  I was administered 2 rounds of Intravenous Immunoglobulin (IVIG) treatment and put on high dose Prednisone (steroid immune suppressant).  The results were amazing.  When I went to the hospital for the fist IV treatment, I could barely walk down the hallway, and afterwards, I could walk unassisted.  I felt so much lighter!

After the IV treatments, I was slowly weaned off of the Prednisone.  I missed the first half of my sophomore year of high school because I had to stay home and rest.  However one year later, I was totally off the medication and having my best swim times ever!  They said I must have had a new type of Guillian Barre because they hadn’t seen someone with the chronic type get better so fast.  … And then my parents got divorced.  I didn’t really think it affected me that  much, but soon I began to notice the tingling in my arms, and I knew what was coming.  The worst part about the Guillian Barre returning was that no one really believed me.  The doctors just had a wait and see attitude. They tried to put me on the Prednisone again, but it didn’t work.  They told me we had to wait until it got worse because the IVIG treatment was so expensive.  Finally it got to that point.  I missed the first few weeks of my senior year because I was having treatments.

I had to go back on the Prednisone – this time for the rest of my life they said.

I would slowly titrate down to a low, sustainable dose, but I would have to take this medication for the rest of my life.  I would have to take extra calcium and have bone scans periodically to make sure the Prednisone wasn’t deteriorating my bones.  And so I did this.  For about 5 years.  I barely recognize myself in these pictures from college because my face puffed up from the side effects of the steroids…

After I graduated college, I was at a crossroads.  I had been working at GE doing web-design all through school, but I knew I didn’t want any more of that.  I actually drove out of the parking lot screaming with joy on my last day.  But I didn’t know what to do next.  So I asked my parents if could go on a Vision Quest for my graduation present.  It would be the first time I had ever travelled alone.  At 4am on a steamy late summer morning in Kentucky, I packed up my car and drove 14 hours by myself to Temagami, Ontario.  There, I boarded a float plane and flew out to an isolated wilderness area where a magical island called Langskib would be my home for the next 2 weeks.

Oh yeah, and I cut off all of my hair too!

During this time I was still taking the Prednisone.  It was a very small dose, 10mg every other day.  They said they weren’t sure if I would be okay without it, so I’d better just take it.  As part of the Vision Quest itself, we were supposed to go out onto the land and sit for 2 days & 2 nights with no food & no water.  It was assumed that because I was on medication, I would augment the plan and bring food and water with me in order to take my pills.  But I wanted to fully participate.  I felt very strong in my body that I was healthy and well.

I decided that this tiny pill I was destined to take for the rest of my life was FEAR – and I was done with that story.

I crept away from camp on an afternoon break, and went to a secluded alcove down by the water.  I pulled out my prescription bottle and flung the contents into the water.  Feeling very liberated, I returned to camp.  I found Renata, a close family friend and a Medicine Woman, and told her what I had done.  Thankfully she didn’t call a float plane to have me air lifted off the island.  Instead she looked deep into my eyes, searching  for any trace of doubt.  Finding none she said, “You know… you can’t just ask the Lake to take things from you…  You must offer offer something in return as well.”  She asked me to take her to the place where I threw the medicine into the lake.  We went there in silence.  Once we arrived, she gave me offerings of tobacco and cornmeal.  She stayed up on the bank and smoked while I went down to the water.  I made my offerings to the lake; gratitude for this experience, the supportive community, and the health & abundance that I could feel vibrating within me.

This was where I threw all of my medication into the lake.

As part of the preparation for the Vision Quest, we also had Sweat Lodge Ceremonies.  This time I actually went in.  One time I entered into the lodge first.  As you enter the lodge, you file around in a circle, and the first person who enters is the one who leads the prayers – and that was me.  I was horrified.  Me?!?  But I was only 22!  Every one else on the program was 45+. How could I lead the prayers?!  But there was no other choice.  The sweat lodge is very tight quarters, so there was no way I could switch places with my neighbor.  Then I heard a voice (or rather a knowing) within me say, “Just do it like you were meant to do it.  Like you’ve been doing it all of your life.”  And so I did.  At some points it was almost like I was witnessing myself from outside of myself.  Looking back now I know I was accessing the wisdom from my past lives.  One night after the sweat, I was sitting outside the sweat lodge with Renata waiting for the fire to die.  I remember looking past her, and across the fire, at the entrance to the lodge.  It was in that moment that an idea flashed into my head.  I knew right then & there that I was supposed to be a Medicine Woman.  It was so clear.  I didn’t think about how – or if those were even the right words.

At that point in my 22 years of existence, it was the most certainty I had ever felt in my life.

Another part of the Vision Quest program were the daily Dream Circles, where Jungian Analysts would discuss the symbols in our dreams with us.  They said this was important work, since you dream differently when you sleep next to the earth.  Through my dreams and my visions I had 3 main images come up; a rain cloud, a deer, and a wall full of vines.  To me a rain cloud symbolized being clean, renewed, refreshed, resilient, and activated.  A deer was a symbol of agility, grace, strength, and a deep connection to nature.  In the vines I saw vibrancy, tenacity, growth, and … a healthy nervous system.

After finishing the program I was on top of the world.  I felt stronger than I’d ever felt before.  And this was only half of the trip!  I spent the next four days after completing the Vision Quest traveling in Montreal.  I stayed in a beautiful studio hotel room, took myself out to dinner, and climbed Mount Royal.  (Side note – the summer before I’d stayed in Paris for 5 weeks with my school.  One day I had to go get train tickets for a trip I was taking with my friends the next day.  I had to go get them because everyone else was in class.  I was sweating the entire time because I was terrified of being in the city alone).

Every night before I went to bed I would write a page of affirmations.  “I am the vine.  I am growing.  I am vibrant.  I am tenaciously reaching for the next thing.  I am the deer.  I am strong.  I am graceful.  I am agile.  I move about in my environment freely.  I am the rain cloud.  I am cleansed.  I am pure.  I am renewed.  I am resilient.  I am activated.”  This was pure guidance.  This was before I knew anything about affirmations, or I AM statements, or even the Law of Attraction and manifesting.  The universe spoke and I listened.  I wrote these statements every night for the next 1.5 months.

2013 marked 10 years since that summer and I’ve had zero symptoms ever since.

Now I can say:  I used to have an auto-immune disease, but then I changed my mind.  

In 2005 I saw my neurologist for the last time.  He was more encouraging than baffled.  “If it is working, go with it,” he said.*

The same year of the Vision Quest I entered on to what would be my path as a Medicine Woman.  It started slowly at first, with yoga and bellydance.  Then came an internship with an aromatherapist, and qi gong every morning at 6AM 4 days a week.  Then acupuncture school and moving to California.  And always metaphysics, astrology, and energy medicine.  I believe that the Vision Quest itself was a powerful transformational experience.  I believe that writing the page of affirmations every night for a month & a half did activate my DNA and change the chemistry within my cells, initiating a state of spontaneous healing.  But even more than that, I believe that by coming into alignment with my true gift as a healer, and by stepping fully onto this path that I was healed.  In South Dakota when I had refused to enter the Sweat Lodge, I was also refusing to step into my role as a healer, and because of this refusal I had to learn some lessons.  I had to learn that I can change my biology with my intention.  I had to learn to communicate to my cells.  I had to learn that I was FAR more powerful than I thought.  And I wouldn’t change any of it.

Ten years after the Vision Quest, I went to Burning Man for the first time.  And it was not what happened at Burning Man, but what happened after Burning Man that changed my life.  After being in San Francisco for 6 years, the gates to the city were blown wide open.  Connections blossomed and intertwined with others.  In the loving arms of the community that had swept me up in a giant, dusty, sparkle-fur hug – I found the freedom to be my true self.  I found the freedom to let the magic explode out of my heart.  My healing practice is thriving now because of the support of my community.

Lessons I have learned from this experience:

  • Things are not always what they seem.
  • You are bigger than your biology.
  • You can heal yourself with your intent.
  • Your intention is one of your most powerful tools.
  • Healing can happen faster than you think it’s possible.
  • There are more things affecting your present state of “health” than you realize.
  • Your immune system is a manifestation of your belief in your divinity.
  • You always have choice.
  • Expanded Awareness (Personal Integrity) + Intention = Miracles
Today I can say that I truly am a Medicine Woman – determined to inspire the evolution & expansion of human consciousness by my very existence.

*Disclaimer:  My journey was my journey.  It is not for everyone.  I do not recommend any one to stop taking any medication without the supervision of a health professional.  

From the depth of my true heart,