How my MS healing journey began

I hadn’t chosen MS, but it chose me - I believe as a way to define health and defy disease.

It was 2006. I was walking into an Arizona Biltmore conference room with my crew girls. We rowed crew multiple times a week and were super synced. We walked into the conference room the way we rowed - all together, all tuned in to each other. But this time, the focus was on me. I'd just gotten an MS diagnosis. Shay had invited us all to the MS Society fundraiser. I felt supported and was incredibly grateful for their presence as we navigated a hellish walk to the conference room. The afternoon would unfold in unexpected ways and their presence was my anchor. 

Walking in, I saw there was a health fair in the halls outside the ballroom. Vendors selling products to support my physical demise as I progressed through the disease. So many things. There were products to keep your core cool, your head and neck cool (MS can be flared by overheating), products to help your vision in case you were going blind (MS can attack the optic nerve). Companies selling assorted walkers and canes, pharmaceutical reps hawking drugs to ease your pain, ease your depression, ease the side effects from the major pharmaceuticals used to “combat the disease”. There were wheelchair companies. More companies selling mobility devices and also, people really build elevators in their house for their wheelchair? Remember that corny infomercial selling the contraption that would attach your wheelchair to the handrail on your staircase and whiz you up and down? Evidently, that could be me!

Almost hyperventilating, Stephanie, my best friend, my rock - held my hand, and led me to my seat. Luncheon was served - all white flour and crappy manufactured food masquerading as fine dining often served en masse at these banquets. Dry rolls, limp lettuce, dressing made with terrible oil and gross overcooked farmed fish at this esteemed resort.  I only remember no hunger. Zero desire. 

The keynote speaker was a successful author. She was talking about her most recent book dedicated to her best friend with MS. I read that book. It was about friendship and MS and building an elevator in your home to accommodate your friend, whom you end up caring for as she dies of the disease. 

I could feel all the crew girls watching me.  My breathing was short and shallow, my face  tense. I was sweating and having a low level anxiety attack. I couldn’t sit there any longer. Us crew girls, all tuned into each other, stood up, left our limp iceberg lettuce and hard lunch rolls behind, and headed straight to the bar.  We drank margaritas, had shots of tequila and talked. We tried to process what we had just witnessed. It was a big Oh-Fuck listening to that author. My friends were with me as we all processed how I could devolve from competition rowing to wheelchair. I had a sudden bright image of a woman from my past - Suzy Patterson.  My long time boss, whose wife was rumored to have MS. Suzy was an active competing athlete, a ranked tennis champ. So strong and vibrant. She lived the dream in Aspen. She looked nothing like any of these people. That was the beginning, the defining moment and my utter inner knowing. What I witnessed that afternoon would not be my future. I rebelled violently. I imagined myself being dragged toward a cliff, my heels digging in and my mind screaming frantically NO!!  My vision for my future looked completely different than what I was literally being sold and told. I would be dancing at my children’s wedding. Full Stop.  But how? That was the journey I would be embarking on.

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Though, in those early days there was so much I didn’t yet understand. I was frightened that my body could do this, have these symptoms and painful sensations. My presenting symptom is what’s called a l’hermitte's sign, which is an intense, literal electric shock that extends from your neck along your spinal cord, through your legs and into your feet, precipitated by looking down. Also, my legs. Stiff, cramped, pained. Weakness walking, not lasting the day while also being numb and “buzzy”. So many questions: would I be able to participate in activities with my children? How could my body betray me? Didn’t I take good care of myself? 

All my life, I was desperately outrunning our familial trajectory of obesity, depression, addiction and illness that had ensnared everyone on both sides. I grew up as a chronically sick child. Allergies to everything, eczema, asthma, bronchitis, tubes in my ears, tonsils out, adenoids out and an unknowable amount of antibiotics. Despite that, I developed a keen sense that I did not want to mirror my family. I grew up in the 80’s, early in the nutrition realm and the height of processed food, which my mother wholeheartedly embraced.  The foods of choice in my home were Hungryman TV dinners (Salisbury Steak!), diet Cherry Dr. Pepper and Snackwell cookies. Steak-Ums were our special dinner nights. Fast forward and by the time I was in my 30’s, I was seemingly “healthy” - I ate organic, I exercised regularly - I rowed!  However, I clearly was not healthy.  After the birth of two children, it was like my body just crashed. I had been reaching for health since I made the connection between my constant illnesses and my family's struggles with the same.  I thought I was doing all the right things. But I was to learn, I was doing a lot of right things wrong.

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Reality crystallized in that ballroom: my embracing of western medicine to treat MS was a linear path to disability and decline.  Viscerally, I understood that I continued to reach for health because I inherently knew our body doesn’t work in prescribed westerns ways. See, healing happens all the time. Healing is all around us. Injuries heal, people heal, psyches heal, everything in nature can heal. WE ARE NATURE. We are literally born with the innate ability to heal. With the right environment, we are born healers. I knew this deep in my gut. I did not want to be one of those sad people wandering through the “health fair” pretending to be happy about the newest feature on the recumbent wheelchair. I was mystified and horrified. Who were these people? I hadn’t chosen MS, but it chose me - I believe as a way to define health and defy disease. I chose to be empowered by this diagnosis, not defeated.

See, I was supposed to be there. That moment was the culmination of my past - my illnesses, my mother’s depression, my brother’s addiction, my family's cancer battles.  It was the culmination of what I so deeply wanted - a healthy vital life that was diametrically opposed to what was being served to me. I was meant to see what the collusion between capitalism, as in the never ending choices to ease my demise, and the conventional medical and pharmaceutical care system had rigged for me to believe. That was the day the door to the western medical system closed and I stepped through the door of authentic wellness.  As scary and uncertain as it all was, that was when I knew.  I would devote my energy to natural healing methodologies, not western medicine’s pharmaceutical treatment du jour which offered only declining health outcomes. This was a HUGE decision that went against my family and friends and everything we understood at that time. 

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I started researching, reading, and interviewing women with MS. I reached out to Suzy. I yearned for her secret sauce and she became a mentor to me, inspiring confidence that I too could pursue a natural path. It turned out she never used conventional western pharmaceuticals, she was diagnosed before those were developed and had by then learned the power of the human body. Incredibly, she hadn’t seen a Neurologist in many years. She shared, MS is a very selfish disease. It will affect your whole world, your family and your friendships. She was right, but how it would, was within my control.  I determined I would cultivate a mindset of non-negotiable healing. I chose to be empowered by this constellation of bodily symptoms labeled Multiple Sclerosis. My body was talking to me, I needed to learn to listen. The diagnosis would not be the beginning of the end. It would just be the beginning.

18 years after that fateful afternoon, I have become successful. Gratefully, I’ve never used conventional medications, nor any pharmaceuticals to treat MS. However, I am still healing.  I’ve come to realize that health is not a destination. It is not linear. It is not prescriptive. It is not reductive. Healing is a life path that is always unfolding. Health is a cosmic mosaic, a never ending and always shifting mandala that illuminates so much, offering intelligence and wisdom. If you choose to walk the path of listening.

How do you view health and healing? Are you choosing health and vitality or are you choosing the trappings of your illness? Are you choosing a new identity based on your diagnosis, or are you ready to shift your wellness paradigm, and embark on a whole health quest?

What is your empowered paradigm? Having one makes all the difference. It starts with the vision of your future self.

What is your vision of your future self and how has the conventional health narrative shaped yoU? I would love to hear from you.