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In 2010, I was stung by a scorpion while teaching a retreat in the jungle of Costa Rica. When a student wrapped a sarong around me, I felt a hot arrow hit me in the hip. I threw it off, and a giant scorpion landed on the deck with a thud. Feeling like an injured animal, I walked away from everyone to assess what was going on. We were 45 minutes away from everything, so I had nothing to do besides wait it out.
As the fire in my hip started to subside, my lips, tongue, hands, feet, and shins went totally numb. I started seeing things, and pain came in waves as the neurotoxins moved through my system. It lasted through my class that night, and into the next morning. I don’t know exactly when that ended and when my multiple sclerosis (MS) symptoms started. Some people say there’s a correlation between the shock of the sting and my immune system being taken over the edge.
Within a few months, I was getting bad headaches, internal shaking, and my balance was off. My symptoms were aggravated with stress. I would look at my body, and think, Where am I? This doesn’t feel like it used to feel. I felt like I was made of electricity, as permeable as ether. I remember putting some blankets away after a class, and seeing splotches of yellow on things that weren’t yellow. Once again I felt as though a scorpion was stinging me.
After a morning of teaching yoga, I stood in my home and thought, Something’s really, really off. I called my doctor with my symptoms: left side numbness, pain down my arm, high heart rate—and he told me to go to the ER.
After a chest x-ray and other tests at Good Samaritan Hospital, they told me that everything looked fine. My friend and I started chanting Om while I was hooked up to machines to try to calm me down. When the doctor came in, I held his hand and said, “I know my body really well, and something’s really not right.” After a CAT scan, he came back in looking somber. “You have lesions on your brain that are not necessarily active, but could be an initial sign of MS,” he said. All I remember after that was my friend asking me what I needed. “I want to go to your house and have toast with avocado and butter and salt,” I said. And that’s what we did.
A few days later, I received the official diagnosis from my neurologist. My brain was non-functioning in places where there should have been myelin (fatty tissue) to help the connections between nerves and brain. At that time, my symptoms were an overall anxious feeling, muscle weakness, loss of balance, brain fog, and exhaustion from overstimulation. Because of the nature of the disease, I have become relegated to the whims of my fight and flight response. I started taking Rebif, a disease-modifying agent in the form of injections in my thigh, arm, and stomach three times a week to prevent my symptoms from getting worse. I made it into a practice, lighting incense and putting the injection on the altar as it warmed up. I would bless it: “I respect this choice that I’m making. May it be okay for me to do this.” I started to use painkillers for the intolerable flu-like symptoms. At one point, I decided to skip the pain medication to actually feel what this was doing in my body. Less than an hour after the injection, my joints felt like they were on fire. I remember thinking, I can’t believe what I just took is causing this much pain in my body, and I’m choosing to do this.
The following year, I took a trip to Belize and didn’t want to pack all my meds. I didn’t feel any different without them, so I looked into alternatives when I came back. The only options were new drugs with possible side effects including cancer and death. I asked my doctor what would happen if I did nothing but change my lifestyle. My neurologist suggested that I stay on some sort of medication so that the disease would not progress—mind you there are no guarantees, and it’s all a gamble anyway. Navigating side effects, quality of daily life, and the fear of what might be on the horizon is an ongoing conversation. At the time, I knew I couldn’t subscribe to the medication any longer. I wanted to try something different.
Since then, I’ve tried many different diets and now work with an Ayurvedic doctor. I went to some support groups, but most people there were not looking for ways to reduce stress, and washed down their meds with a cocktail. The most helpful treatment is creating a low-stress lifestyle and environment. Downtime and solitude is a requirement, not a luxury. Stress immediately affects me, through shakiness, anger, balance problems, twitching muscles, or difficulties in formulating sentences clearly. Although I don’t feel like I’m getting better, I am making wiser choices. Symptoms persist. The natural route is working to keep me stable, but I’m interested in exploring some of the newer options available in Western medicine.
So much is changing with research. I’ve had to listen to myself a lot more and not feel like I’m letting anybody down by making commitments I might not be able to keep. I’ve had to get closer to the people I love so they know how to best walk this path with me.
My yoga practice has evolved through this process. While it used to be more physically rigorous, it’s now about grounding practices, like a one-minute hold in Downward-Facing Dog. It calms my nervous system, which is always on high alert. Taking a strong physical practice with a grounded teacher can feel really good, as do supported restorative poses and other solid, anchoring postures.
It has been hard to have this experience as a yoga teacher. Since my diagnosis, my teaching has slowed down. My sequences have shortened, and I’m at my best when I don’t have something strict to follow. I am inspired to get everyone to really “show up” for practice. I keep returning to the notion of impermanence; once we can embrace that truth, presence is just a breath away.
I know my body better now, even though it feels strange to me. I wrote to Matthew Remski, a teacher of mine based in Toronto, and asked, “How do I show up to the mat when I’m constantly being haunted by what my asana practice used to feel like?” He wrote back, “There’s no then and now. Everything is integrated into the present time. What you’re experiencing has brought you closer to the fragility of the human body and experience. The flesh of now is experiencing this truthful connection.”
I feel like I’m moving into a different chapter now. I want to work on my projects and continue to teach, but I am very clear about what’s sustainable for me. My teachings focus on yogic living practices and dialogue, meditation, chanting, and being with the silence after chanting.
In my life now, the natural world has saved me. I find inspiration in nature because it doesn’t fight change. The flowers don’t appear any less colorful because they know of their ultimate demise. There’s something inherently calming about the force of nature—that presence of continual change as a reminder of something bigger. My dog also inspires me to feel like I can actually care for another being who is there unconditionally. My students inspire me with their patience and generosity through all the changes I’ve made. Memories of people who aren’t with us anymore also inspire me; my friend Bobbie, who died of a brain tumor, became more and more like light as her illness progressed. She’d been immersed in practice her whole life, so it was obvious at the end. I even inspire myself at times, if I can pull back and see the path I’ve taken.
MS is me. It’s what I’m with all the time. I’d like it to go away, but I just have to work with it and include it. It’s been a real teacher; I don’t get to feel invincible. There’s a heaviness to this that is hard to shake around others. But when I’m walking in the woods or on the beach with my dog, feeling the force of nature that is always so present, I think: I’m well enough to do this. If I could pass along any message, it would be to keep going. I’m reminded of a poem I love from Rilke:
Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
(Rilke, Book of Hours, I 59)
Just keep going, whatever happens.
Uma Diana Hulet shared her story with writer Sophia Emigh, who authored this piece. All photography is also by Ms. Emigh.
This story was originally published on Sonima.com. If you enjoyed this story, check out these other articles:
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