I woke up to my left leg numb and tingling. I was 21 years old, and it was finals week of Winter Quarter 1995 at University of California, San Diego. I was also in physical therapy for multiple back injuries and fractures throughout my teen years that had resulted in chronic pain and eventually some dysfunction. At my PT appointment later that same day I mentioned to my therapists that both of my legs had been numb a couple of years before. “Maybe it will go away,” we wondered. The next morning, both legs were numb and tingling, and the following morning, I was numb from the chest down! The student health physician referred me to a neurologist, who immediately got me in for blood work and MRIs. I was inside the MRI tube for over an hour, mostly numb, for who knows what reason, and I vividly remember enjoying the power of “simple pleasures” as I listened with nostalgia to Jim Croce through the headphones.
A day later I was sitting in the neurologist’s office, and while he said the words “Multiple Sclerosis” I had the sensation and visual experience of looking through two eye holes, then almost like sliding to the left and looking out through two new eye holes. My life perception viscerally and completely changed in that moment. I didn’t actually know what it meant, but I knew it was one of the “big diseases.”
I read everything I could get my hands on, which in the days before the internet was widely accessible, was found mostly in textbooks and pamphlets. It was big. Anything in the brain or spinal cord could be affected. My own immune system was attacking the myelin, the protein sheaths around nerves that allow them to conduct electricity, like the plastic around wires. Common symptoms were visual disturbances, numbness, dizziness, organ dysfunction, cognitive issues, and eventually in some cases paralysis, organ failure, and death.
Most of me was shocked and scared beyond belief. Part of me was relieved, because I finally had answers to why I had numb, tingling legs two years before. A year before that was dizziness that kept me on the couch a few weeks. And two years before that was numbness and tingling from the knees down for a few weeks. Now I had answers to the mysteries.
The brightest aspect of that first week was the incredible support I received from my friends, even while they were dealing with their own finals. Over spring break I went back to my hometown in Northern California to get a second opinion, including a lumbar puncture or spinal tap. I stayed perfectly horizontal on the couch or in bed for twenty-four hours, even while eating, to avoid the dreaded “spinal tap headache.”
I was signed up for a support program for the “newly diagnosed.” Everyone I spoke to had such varied symptoms, but some were similar to mine. Connecting with other people was helpful, but also surreal, and at times disturbing as their symptoms were sometimes far worse. Was this my future?
My symptoms progressed after the initial diagnosis. My legs felt like wide, tight bands were sometimes constricting just above my knees, a form of spasticity. One day I tried to sit at a cafe table and my legs wouldn’t go under. When I looked under the table, I could see they were against the table leg. I couldn’t feel the pressure, but a pin prick test in the neurologist’s office had felt twenty times sharper. When anything cold, even a wind, touched my legs, especially the left one, it felt like a cross between electric shock and acid burn. When I took a shower, I had to first run a warm bath, slowly immerse myself, then turn on and stand up into the shower.
Stepping into the water droplets was excruciatingly impossible. I was probably the only person in San Diego wearing thermal underwear. I had learned in physiology class there are different nerve endings for sensation, pressure, and temperature, but now I knew exactly how separate they were.
I could no longer hold my bladder like a normal twenty-something-year-old. At some point my cognitive function declined. I would be mid-sentence or mid-paragraph and suddenly have no idea what I was talking about. It felt shocking and embarrassing, so sometimes I felt like crying, sometimes I just got quiet, then would apologize and attempt to explain. Instead of occasionally forgetting a word, it was happening regularly.
One of the hardest aspects was the heat sensitivity. I could not allow my internal temperature or heart rate to go up, or I lost overall function. I woke up once in a sun saturated guest room at my college boyfriend’s parents’ home. He found me barely responsive. Luckily he knew to open the window and cover me with cool, wet washcloths. I carried a brick sized cell phone for emergency calls only, because the idea of my car breaking down in the sun was terrifying. One day I started walking up the street from my house, but after about a block, my legs felt like they each weighed five hundred pounds. I had to stop and sit.
One strange symptom was that everything intensified when I would bend my neck, putting my chin on my chest, or if I would push my upper body up when laying on my stomach. My spinal cord was very sensitive within my own spinal column.
Over the next months some symptoms got better, but the heat sensitivity lasted for about four years. I couldn’t let my internal temperature increase, and it seemed most everything in my life was decided around this. Every time I moved, the new apartment or house had to have a bath tub. The spine positioning of bending my neck or low back created symptoms for years, even when mostly gone.
I moved back to Northern California in 1998, and in 2002 my new neurologist said he’d like to get a follow-up MRI and put me on the latest greatest medication that could prevent me from getting any worse. Self-injecting into muscle, I went from no problems with needles to panic attacks. The interferon medication also had the side effect of overwhelming suicidal ideation. I had moments where I felt so deep, dark and horrific all I wanted was to explode into a million pieces and disappear completely. I was put on an anti-depressant to counteract this side effect, which worked at first, but after a few months it started to lose effect. I decided I would not play the “up the dose, then try a new anti-depressant” game I had heard about, and self-weaned the interferon and then the anti-depressant.
During one of the deep, dark times, I called out from somewhere within me, “HELP!!” Shortly after that I was reading a book, and in the final pages the name of a survival training camp caught my eye. On their website, a description about one of the teachers listed the term “Reiki Master.” I didn’t know what it meant, and I felt an overwhelming need to find out. The first search link I clicked on said “...excellent for multiple sclerosis...” I was stunned. I found a local practitioner who referred me to his teacher. I asked her to explain it to me, and she said it was better for me to just experience it for myself. My usually scientific mind surrendered immediately, and I booked an appointment.
With my first session I felt an uncanny sense of “greater well-being.” I was hooked, and went for a Reiki treatment every week. Soon I could feel energy moving through my body, like water, or warmth, or sparkles. My neurologist eventually called me into his office. “I’m kicking you out. You’re the healthiest person in my practice. Keep doing what you’re doing.” He looked at his notes on his clipboard, shaking his head, saying under his breath, “There’s something about attitude!” I smiled, thanked him, and left.
In 2006 my best friend handed me a little book called Heal Your Body: The Mental Causes for Physical Illness and the Metaphysical Way to Overcome Them. I looked up MS, read the probable cause, and thought “this doesn’t describe me” and left it on the counter. “They don’t know what they’re talking about. None of my friends would call me hard-hearted!”
Over the next year, I had three separate situations where I had an internal response, an emotional defensiveness, that I would have called “steeling myself.” There were also three exacerbations of MS symptoms, although I did not see the correlation at first. During the first onset of MS symptoms, I called my neurologist who asked if my symptoms were old ones or new ones. When I responded with “old ones,” he said “Let me know if they are new, we will admit you to the hospital and start prednisone.” I had been on that drug before for a blood disorder, and while very helpful, I thoroughly knew its unwanted potential side effects. I acknowledged his plan, hung up, and laid on the couch. In the past I had found great emotional stress relief through meditation; twenty minutes of visualizing myself as a human-sized plate of dried rice, that I slowly dislodged grain by grain until I could scoop and sweep my “plate self” clean. Another time I was a tarnished bronze statue that I rubbed until it sparkled and gleamed. This time I spontaneously imagined myself as a light bulb, filled myself with white light, then radiated and expanded until I became the light and fell asleep. I woke up a bit later, went on with life, and within a day or two I felt fine.
After the second symptom onset, I finally recognized the similar internal “frequency” of steeling myself and the time delay of the physical MS symptoms. The book had said, “Mental hardness, hardheartedness, iron will, inflexibility. Fear.” I caught myself much sooner through the third situation, let it go, and the MS symptoms were fleeting.
If I catch myself “down the MS path” I have learned to think of it as my “cosmic 2x4.” Choose a higher road, now, or else! I’ve been repeatedly “forced” into what has become an incredible spiritual journey, and one of the greatest gifts of my life. If I let the emotional defensiveness go a little too long, I feel like my nerves are about to catch fire, and I simply can no longer take another step down that path. I stop, let go, and lay down. I meditate on my breath, exhaling completely, releasing everything... physical tension, mental stressors, emotional anxieties. I imagine myself like a light bulb, filled with and radiating pure white light, then expand and become the light, until I am no longer “me”, no longer a gender, race, or a story of any kind, until I am simply allowing and receiving unconditional love and unlimited wellness. I know and trust from many years of practice that I will be right as rain within twenty-four to forty-eight hours, and the most symptoms I have felt is a prickle on my upper back that tells me, “Good job! Close call.”
I have received such grace on this journey, some of which I allowed for myself in the form of self-love and the determination and openness to try new ways to health. There have also been countless blessings from others—from college friends who found time during their own studies to support me during the diagnosis, to the neurologist who released me when he saw what I was doing was working, to my best friend who gave me the book on how to heal through changes in perception. I am overwhelmed with gratitude for every person and situation I have encountered along the way, for each has empowered me to move forward in wholeness, self-
discovery and wonder.
ABOUT THE AUTHOR: Mija Cameto was raised fourth generation immersed in western surgical medicine, with innate talents for and deeply passionate about the human body since childhood through science, mathematics, anatomy, physiology, artistic expression, movement, bodywork, meditation, and consciousness. After decades of personal illnesses, conditions, and injuries in every system and location of her body, her teaching and consulting work are the culmination of living a synchronistic and guided path further into wellness than she could have ever imagined. It is an honor and a gift to assist others to find their own path.