You may or may not know that I went to theatre school. I hold a BFA in theatre and, to this day, believe I use my theatre skills more than those professional skills garnered obtaining my master’s degree in public relations and advertising. In undergrad, I had four years filled with voice and speech, acting, stage combat, makeup, dialects and movement.

Movement – a word that holds so much joy, so much possibility and for me, sorrow and loss as well.

Learning movement in school

In theatre school my movement teacher Liz, always clad in velour clothing and smelling of patchouli and pot, spoke of energy. Energy moving in the body and energy trapped in the body. Energy in our voice and how the body and voice work together to feel, experience and move that energy around. If you’re rolling your eyes right now or thinking this post is a level of woo woo you’re not into, hang on one second, stay with me. Think about singing. Think about dancing. Think about sighing, yawning, or simply stretching. There is usually sound linked to that movement and it feels good. We use movement to marry expression and vocal intonation and to tell a story. We use it to release emotions and energy trapped inside our thinking selves.

How we move, how we sit, how we hold ourselves tells a story many of us aren’t even aware of. Sadness and sorrow, confidence and poise, fear, joy, attraction – the body doesn’t lie. My college years were spent rolling around the ground, releasing emotion on sound, shaking the body, doing yoga and aerobics and everything in between. This memory still makes me smile and laugh as my older sister was in four-hour chemistry labs as I donned my corset for dance class. While I am no longer an actor on stage, I still sigh loudly, cry with emotion and volume, dance and sing showtunes in the kitchen and invite movement into my day any way I can. To be clear, the movement I write about is not structured movement; it is free form, it is animalistic, it is wonderfully weird.

When ability and movement change

How can I convey a body that stops working one day to the next? Or the amazing ability for our muscles to compensate so when you finally notice something isn’t working, it’s too late to address it? Few people will ever experience knowing your body used to do something and simultaneously accepting that no amount of thought or effort will make that movement happen again. The body and mind, once in harmony, are now in conflict.

This lesson has been the hardest in my 10-year journey with multiple sclerosis. When I was diagnosed I had no symptoms apart from eye pain. By the time I learned the term “foot drop” I had been living with it for years. As my walking endurance and pace decreased from 10 miles a day to 5 miles to 2 miles to being unable to walk around the block, there was nothing I could do to reverse the decline of my neurodegeneration. The lesions in my cervical spine were in charge now. My movement was about compensation. As mobility decreased, fear increased exponentially. I couldn’t make sense of my former self and accomplishments in this new, broken, malfunctioning body.

My former self:

• hiked the Inca Trail to Machu Picchu in Peru.
• summitted Angel’s Landing and balanced on wet bowling balls in the Narrows of Zion National Park.
• lived for years in Chicago without a car, walking one end of the city to the other.
• received my 200-hour yoga teacher training certification and taught yoga at Cleveland Clinic.
• traversed this beautiful world from London to Morocco, Budapest to Belize.
• always craved movement and body expression.

Pay attention to the body

I was taught and now firmly believe, that the body speaks loudly and clearly if we are willing to listen. Sadly, I think my body was screaming at me for the better part of a decade before diagnosis to slow down, take care, rest, relax. In my 20s I ignored it of course. I muted and disregarded the voice with lack of sleep, caffeine, alcohol, and the belief that I was invincible and infallible.

I spent my 30s pushing through, hearing the messages of my body but actively choosing to ignore them. I wanted to prove to everyone that my disability would not define me. In fact, I shunned the word disability altogether. It was a club I did not want membership to. I hid my diagnosis and my struggles with everyone in my professional life and minimized the impact with my inner circle. I wanted to be normal, healthy, and that horrible word, fine. I was willing to work harder, longer, and more, to prove I could do anything at the tremendous expense of my body, my mind, and my health.

When you ignore the body, there will come a point where it’s no longer patient or meek. The body turns into a screaming, yelling, unavoidable, flashing red light DANGER message. I ignored the body for too long so it stopped, it gave up, it broke down. There are thousands of could have, should have and wish I would haves, but no amount of wishing will change my history and experience.

Straining to listen

Now, I’m patiently waiting for cues, comments and whispers to inform how much I can and should move each day, each hour. When I should push my limits. When I must give over to rest. When I need to end the day early, accept its deficiencies, and look to tomorrow to start fresh.

I know my body still craves movement and release. But I must embrace the weird I learned nearly 20 years ago, to move in any way available, to celebrate the mobility and range of motion still open to me. I shout, moan, scream, sigh and cry with sound as my body aches, stretches, and moves.

What does movement look like now? Well, when I’m on the ground playing with my dog, I stretch, move and groan in cat/cow yoga moves, arm circles, and gentle spine twists. When I’m at the kitchen counter cooking or doing dishes, I squat and do hip circles while holding onto the counter. I frequently stand tall on both feet desperately trying to find a neutral stance and posture but lacking the bio-feedback that I once had. I stretch before I even attempt to get out of bed with gentle bridges or child’s pose. I roll ankles and wrists, I use the wall to balance with simple movements. I’m ever-so-gently reminding my body that movement is ok, it is safe. I’m trying each day, small nuggets of movement to re-train my body hoping neuroplasticity takes hold and I relearn balance, movement, and endurance.

For what it’s worth

We all have our struggles. We have different relationships to food, exercise, movement, and our bodies. But please, I beg you, don’t take your movement for granted. Celebrate what you can do and what you did accomplish rather than demonize all the things you think you should have done and wish you could still accomplish. Mute the judgmental voice inside your head and pay attention to the cues of the body. Movement is a privilege. Movement is movement whether you’re doing a cross fit class (something I never wanted to do even when I was able-bodied) or emptying the dishwasher.

This past Saturday, I did over 7,300 steps. A friend of mine commented on a shared post on Instagram that she had just gone for a hike in Hawaii saying, “It was still only 6k. That’s massive.” For all of us, it’s one step at a time whether it’s 7,300 steps around your house or 6,000 up a mountain.

Tracking movement

I was recently featured on the Oura ring’s corporate blog. The fitness tracker community is in large part ableist, but the Oura ring wanted to speak to me about how to improve the user interface, how I use the data with a chronic illness, what was helpful, and what was harmful. They wanted to learn and improve. Shout out to that amazing company as it’s a fitness tracker that doesn’t require the wrist movement to gauge steps. So every step I take with my trusty rollator is measured among other health and sleep metrics. I was impressed with their thoughtful questions and desire to improve an already great product. I can’t recommend them enough. I’ve used their data over the last year and a half to see where I was, the impact of my transplant and my slow progression and healing. I view this in month view rather than week or day because I am still volatile. My body is unpredictable which is why listening is imperative.

I guess what I’m saying is this: listen to your body and the clear messages it gives and please oh please, celebrate your movement and never take it for granted.