Finding Stillness in Motion: Meditating with MS

Meditation helped me manage stress, until spasms and pain began to interfere. Then I learned how to let them arise and return to my breath.

“Light as a feather, stiff as a board. Light as a feather, stiff as a board, light as a feather, stiff as a board,” my friend Elisa and her sister Meredith chanted over me as I lay on the bed.

This magical incantation was designed to induce an out-of-body experience, according to my friend’s knowledgeable older sister. I tried to float above my 8-year-old self as they chanted rhythmically, seeking something transformative.

I remember feeling different, free and light in the air above the bed, staring down at the beige apartment tile. There was so much expectation in the room, excited to see what we could discover.

My experience of meditation has changed through the years, from childhood games to a fascination through my young adulthood with Tibetan monks robed in maroon and golden yellow, their chants punctuated with the deep and sonorous tones of long horns stretching to the floor. The overtones of their chants were visceral and earthy, open and warm.

Little by little, my knowledge of meditation practices increased. I thought that my meditative experiences would become more comfortable and expansive with study. But instead, the more I learned, the more self-conscious and confined I felt. I feared I was doing it wrong. I felt like an imposter. Somewhere along the way, I lost the childhood excitement of discovery.

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MS and meditation

As a sophomore in college, I was diagnosed with multiple sclerosis (MS). With the serene snow-covered Rocky Mountains outside the hospital hallway window, I read the report from my first MRI: I had several brain lesions and one on my spine.

With very little reference for what my diagnosis would mean for my life, I read an article about managing stress in MS. The following semester, I signed up for a stress management elective.

I enjoyed the visualizations that were part of our curriculum. Our professor, a psychologist, guided us through breathwork, followed by relaxation of muscle groups from head to toes. He used words to help us conjure mental images of sun-speckled vistas with flowing waterfalls and shimmering streams.

In these guided meditations, when I was being told what to feel and the moment to feel it, I could escape. Leaving my body behind on the floor, with my jacket beneath my head, hands resting on the well-trod carpet, I would be outside, and outside of me. I was free.

My first relapse

The following year, I had my first relapse, most likely brought on by the stress of my schoolwork. I feared my work wasn’t good enough and didn’t match the abilities of my peers. I let so many things fall through the cracks.

My new symptoms were sporadic. Walking difficulties appeared at random. Doctors gaslighted me, suggesting that my symptoms weren’t genuine because my scans weren’t showing active inflammation. I was overwhelmed. I withdrew from college and went home to the mountains of North Carolina to live with my parents.

Meditation fail

I tried meditation again. I read books like “Meditation in Action” by Chögyam Trungpa, a Tibetan Buddhist meditation scholar. I searched for meditation CDs. Something wasn’t right. I didn’t feel free. I felt pressure to handle my stress, as I felt my 20s ticking away while I was trying to recover. I knew meditation could be beneficial, but I felt like I was doing it wrong.

My seizure-like spasms in my torso and legs would sometimes interrupt my meditation. When a guided meditation told me to relax my forehead, my body would do the opposite and stiffen. I was distressed; what had once made me feel free and weightless was making me feel out of control of my own body.

Finding my calm

I was unable to release myself from this cycle. I sought the help of a psychologist and participated in neurofeedback therapy. With EEG sensors attached to my head, I tried to activate calming brainwaves.

I knew I was doing it right because I got immediate visual feedback: Objects on the computer screen I was looking at would move. After a year of this therapy, I learned how to access that deep feeling of calm I used to have during meditation.

MS can mess things up so badly, not just in our bodies, but also in our minds. I was grateful for the help of a medical professional.

I wasn’t healed, but I was finding my way to pathways that would help me relax.

When symptoms arise

Meditation is not the absence of thoughts and emotions. Rather, part of the practice is learning to observe the thoughts and emotions that arise, then return to your breath or another point of focus.

When you have MS, physical symptoms, like spasticity and pain, can also interfere. I found it particularly challenging to maintain a comfortable position, even when lying down.

A certified occupational therapy assistant (COTA), who specialized in myofascial release, taught me a few modifications that helped. These included putting folded washcloths under my palms to help them feel supported and help them relax. She also taught me that I can put a rolled towel or a pillow beneath my knees if having my legs outstretched for a long period gets challenging.

I began to recognize that certain meditations made things worse for me. Progressive muscle relaxation — the method I had used in college to soften my body and mind from the feet up to the head — now often made me tense up, sometimes triggering spasms. But I had new lesions now, and small children. My MS and my world were different. Even counting my breaths now: one, two, three … made me feel anxious.

I found other guided meditations that worked better for my body. An impartial body scan, starting from the top of my head, and going down my body, and noticing places of discomfort and imbalance — without trying to change them — helped me get to a relaxed state of mind.

I followed it with deep breathing and a visualization of light, entering at my head, trickling all the way down to my toes, gradually filling my body to overflowing. I could float and enjoy the calm.

When tightness came to one leg, even to the point of spasms, I could feel the relaxation in my other limbs. Just as I learned to respond to random thoughts and persisting emotions, I could allow the spasms to persist by returning to my breath. If I needed to go to the bathroom mid-session, I could pause the meditation app, and keep my mind calm, return, rewind, and resume. It was OK.

I learned to accept that this meditation may not be perfect, but it was all OK.

The takeaway

Meditation has proved invaluable for managing my stress, walking, and exploring my emotions without being overwhelmed by them. However, it has been a process of figuring out what works for my brain and my body.

Modifications, outside help, and therapy helped me to rediscover that state I glimpsed as a child. I can again feel “light as a feather.” When my spasms do cause me to feel “stiff as a board,” I know how to make peace with it. It no longer jars me out of the calm and freeing state I’ve worked so hard to achieve.

Whether you’re just starting, or have been meditating for a while, you can modify your practice to feel more comfortable, relaxed, and free. Just like our MS, our meditation doesn’t have to be one size fits all.

Sometimes there will be interruptions from the world outside us and from our own body. A regular meditation practice can help us feel lightness despite our symptoms and meet disruptions with grace.