I remember like it was yesterday. The words over the phone line went something like this:
“We are happy to tell you it appears you do not have an inoperable brain tumor. The latest tests confirm you have multiple sclerosis.”
What I thought would be a six-month death sentence became a life sentence. Little did I know this new reality would allow me to become my own life miracle and inspire people every day.
Multiple Sclerosis: A Life Sentence
Multiple sclerosis (MS) is a life sentence. Its history to date, both in science and as experienced by those suffering from it, has shown it to be devastating, relentless, and unforgiving to any body it enters. I was just 23 years old and married for only six weeks when multiple sclerosis became my forever life partner.
From the word “go” I was the ideal patient. I sat on the Board of Directors of the Delaware Chapter of the National Multiple Sclerosis Society. I look back now to the years I spent as a top fund-raiser, believing a cure was within my monetary grasp.
I even happily volunteered to be a test patient for the first ever disease-modifying drugs during the pre-FDA approval process in the early nineties. As a result of my helpful nature, I self injected with interferon for nineteen long, painful years, enduring some of the most expensive treatments used to modify the disease course of MS.
The Relapse
Fast-forward fifteen years. I had become legally disabled and was two marriages down, alone, and scared to death of being homeless or institutionalized. Weather had become my enemy, leading me to move from my life on the East Coast to Venice, California in an effort to either heal or transition to being homeless.
At first my decision appeared to be the smartest thing I had ever done. The weather, terrain, and slower pace appeared to be just what MS needed. I was able to enroll in college, became a certified yoga and spin instructor, and made friends easily. I also started various part-time jobs.
Then, in typical MS fashion, it all changed. I lost use of my hands, started choking due to throat rigidity, and began falling at random. One fall was so horrific, I found myself face first at one of the trendiest restaurants in Los Angeles during a private event. My knees alone took over five years to change from the color purple and swollen back to normal flesh color and almost equal in size.
By mid-2000s most of my life savings was gone. I lost my home due to the crash of 2007, outrageous healthcare costs, and the need for full-time help. At that point my hand usage had become minimal to non-existent, with rigidity present most of the time. All hand usage was being used to feed and dress myself.
My neurology doctors offered me little in the way of a positive outlook, and merely handed out more drugs and tests for every symptom I mentioned. I was already taking 24 pills a day and injecting every other day at this point. No matter what, it was clear my body was failing to function. I could no longer live independently. Money was running out and I was alone, with history showing a grim outlook. I lived in constant fear of so many things.
Giving Up Gluten
Out of sheer desperation, I began to look at the food I was eating. I gave up gluten and within twenty days my body experienced such drastic positive change that it blows my mind to this day. All involuntary limb jumping stopped and has not returned or threatened to return since I said goodbye to gluten. This was something I never thought possible in my wildest dreams.
From that point, I was certain I had to pay attention to the food I ate. Eliminating gluten was my first step, and it began my search for any and all information I could find about diet and MS. As luck would have it, I found Dr. Terry Wahls and her Ted Talk, Minding Your Mitochondria. Dr. Wahls gave me hope for the first time since the age of 23. I knew a paleo lifestyle was my next step.
Within the first year, all pain had left my body and still had not returned. I stopped injecting with interferon with zero negative effects beyond site wound issues. My out-of-pocket medical costs went from $37,000 average yearly to under $2,000, with most being due to premium costs associated with Medicare. I lost a lot of weight, had increased energy, and even began to ride a bike again for the first time in years.
Sharing My Story
A professor I adored encouraged me to record my disabled life to enlighten others about the challenges I often spoke of in my work and class discussions. He believed many people did not have a lens into the life of the disabled. So for two years I filmed my life to tell the story of disease. I didn’t imagine what I was filming would grow to become a library of videos about self-healing using food and movement as medicine.
After graduating with my BA, I entered grad school still without use of my hands, but healing. I majored in applied community psychology and began working within the community to learn how to inspire, engage, and empower others with my newfound knowledge. By the time I graduated and my thesis was complete, I no longer required voice activation technology. I wrote my thesis with 100% use of my hands.
From Fear to Empowerment
Today I am my own life miracle with a bag of tricks that helps me to live a self-functioning, empowered life. In June, I was unanimously nominated to the board of directors of The Wahls Foundation. I consider Dr. Terry Wahls not only my hero, but a friend. In July, I graduated from Antioch University with an MA in psychology. Now I am dedicating my life to helping others to question the status quo, change their narrative, and become their own miracle.
For the last ten months, I have been solely in charge of my own self-care, with no bodywork, acupuncture, physical therapy, or outside help at all beyond yoga classes. Today I happily live an empowering life, sharing my journey with others. I love masterminding recipes in the kitchen to keep my food-as-medicine life interesting. Keep an eye out for my kitchen creations that support a paleo lifestyle and a good old-fashioned sweat!
Photos courtesy of Shutterstock.
