The Movement of Kaiut
“Might I ask…would you please share with me what caused you to be in the wheelchair?” His voice was gentle, but direct, and he was clearly prepared to listen carefully as he squatted by my wheelchair, bringing his eyes to my level.
“I lost all movement and sensation from T-12 down overnight. They diagnosed me with Multiple Sclerosis.”
“That is wonderful!” His face had transformed with an incredible smile and he briefly squeezed my hand. The inquirer was Francisco Kaiut, and he was, and remains, the only person in the world to respond to my disability in this fashion. My journey in yoga and in a wheelchair was forever changed by that encounter on January 18, 2018.
I was brought to yoga as it seems most of us are: because it was the right time; because I so desperately needed it, even though I did not understand it; and because loving friends and the Leap Yoga community made sure I had the opportunity and the acceptance to make it work. I was brought to Kaiut in much the same way.
For me, MS is a disease of exhaustion and pain, and I had to learn to live with it while combatting intense fear, loss of so much that made me myself, self-loathing, loss of my independence, and inadequacy. Starting to practice yoga after my medical retirement not only demonstrated how very far my physical health had deteriorated, it showed me how the uncritical acceptance of physical limitations had crept into my world. Yoga offered healing and a path to follow, not back to the life I had before (which is not possible), but an alternate path forward. The practice of yoga showed me that I had the power to make it happen…if I chose, and “did the work.”
At the time of that first conversation with Francisco Kaiut, I had made some progress in my weekly chair yoga class, progress I defined as not feeling I was likely to pass out after a five-breath seated spinal twist. My wonderful and intuitive teacher for that class suggested that I attend the first evening of a four-day Kaiut workshop at Leap to learn about the practice. I assumed this would be a sort of lecture/demo introduction, so I signed up, and met Francisco when I rolled through the door.
In addition to the above inquiry and extraordinary response, he explained the reason he was so pleased to learn the nature of my disability. “Just because you can no longer feel a thing does not mean it is not happening,” he explained. “Everything in you remains connected. I can show you how to move.” A lovely gentleman then took charge of me and told me that I would be doing exercises with the class. I was in no way dressed or prepared for this, but when I demurred, I was informed that if Francisco said I was to work with the class, then that was what was going to happen. And off he bustled to collect folding chairs, bolsters and a mat and set me up near the door. (I thought he was just a little scary wrapped around an inner marshmallow, and I later learned that I was correct: it was Butch!).
At the end of the evening, I had a second conversation with Francisco. Again coming down to my level, he asked if I could attend the rest of the workshop, which I told him was not possible, as it was sold out. He squeezed my hand again gently and told me that there would likely be another opportunity.
“Please come then if you can. I believe that the things you do to accommodate your paralysis are limiting you more than the disease. If you allow me, if you return, I know, I know that I can help you.”
At heart, I am a closet etymologist. “Movement” has so many definitions unifying around the principle of activity, change and progress, e.g.: the act of changing physical location; activities during a period of time; the moving parts of a mechanism; a change or development; the development of a story; a self-sufficient portion of a longer musical work; a group of people working together to advance a goal or idea. Movement to a paraplegic is both a dream and an impossibility, pain and hope, and always the first of the three wishes we would make should that genie ever appear. Movement, I had been reminded, can also take place in the privacy of one’s own thoughts, and that particular movement can have the most lasting consequences. Francisco had made me think once again about moving, in all of its faceted definitions.
When I learned that another Kaiut workshop was planned for late July of 2018, I did not hesitate. I had heard Francisco’s voice and promise in my head for months. The Universe had once again thoughtfully dropped a rock on my head to point me in a direction, and I felt it would behoove me to listen. I had been given the opportunity to observe one of Molly’s classes, but had not yet participated much. While daunted by the prospect of four straight days of physical activity, I believed strongly that I had been placed on the path of learning something I did not want to miss.
Francisco explained that part of our survival instinct is to withdraw from pain and that this instant avoidance is a part of all of us. We were not, he emphasized, going to power through pain like gym devotees on a stair climber; we were going to approach it, touch it, acknowledge it, and learn from it. He then asked that each participant do the following: suspend the emotional component of confronting pain; refrain from judging or evaluating pain; recognize pain as the sensation it was; respect the feedback that our bodies were providing; and to open our minds to fresh responses rather than relying on what we “knew.” We were to do each movement with the body that we brought to the mat that day. Very simple. Incredibly difficult. Months of rehab had emphasized that I was not to do anything that caused or could cause pain (broad base, that!), I was not to work my muscles until they were tired, never stand unsupported by my hands, to limit movement to the necessary and keep it task oriented, and that limitations were my new reality and would keep me safe. Francisco dismissed that notion from the very first day.
I thought it would break me. I believed I would injure myself. I feared I would fail. Getting to the mat was a challenge. It took me several minutes to lift and shift my legs into what I hoped resembled Sukhasana, a word and a position that was completely new to me. The pain when I attempted to fold forward was excruciating. I flinched away, condemned myself for a failure, and renewed my hatred for the now only semi-functional body I occupied. Then I found myself laughing. I simply had to. I had just violated nearly every tenant of the request that Francisco had made at the beginning of the workshop. My only failure, I decided was not listening to my body, which could only whisper at best, and whose message was now so very garbled. I was here to learn, not just poses, or even Kaiut; I was here to learn about me and where I now (metaphorically) stood. I grabbed the two blocks I had been provided, and cautiously shifted forward. I had no core strength and my hands could come nowhere near the floor with my legs in front of me, but I was starting where I was.
Every day I went home exhausted. Every day I deferred any commitment to attend the next day’s program until I took a morning assessment. Every morning I felt better. I was thoroughly nonplussed. By the Sunday morning session, it still took me quite a while to achieve what I called the “Sukhasana Semblance,” but my hands were now on blankets rather than blocks. This was literally more movement in four days than I had done in any like period in the four years since my diagnosis. And I could feel the difference. Feel. The. Difference. My movements had changed tempo and structure and for the first time in four years, having pressed my movement beyond the confinement of the pain in my right hip, I felt my left hip. Just a shiver, but I had not imagined it.
I had no idea what to do with the information I was struggling to process. I knew I wasn’t just learning; I had been given a gift and it was that previously promised movement. I was changing my physical location and moving parts of the mechanism that was me. I was experiencing a huge change and development. I had movement through Kaiut. Just a taste, just the beginning, but perceptible progress.
I was going to liken my state when I began yoga to that of a blank slate, but I was not even in that promising a condition. A blank slate implies that the slate has no preconceptions, that it is sturdy enough to take the words to be written on it, and that acceptance of that writing is without an emotionally biased response. I was more like the arid soil of a formerly productive plot of ground, focused on the conditions which had previously existed and craving the water and joyous participation in being one’s best self. What began with the suggestion of a beloved and respected friend blossomed into something amazing, growing from chair yoga to include the magic of Kaiut, varied seminars, different types of yoga, and workshops/retreats.
The best of my Rehab doctors told me that in order to evaluate progress, one should never look to yesterday, but always in larger blocks of time. The daily state of one’s body is too variable, he said, but if you compare where you are to where you were a month ago, a year ago, then you can better evaluate whether progress has been made. After two years, I can proudly say that I can point and flex my feet to put on my own socks from the chair. I can reach more things off of grocery store shelves, a feat that impressed and surprised the clerks at Raley’s. My ability to rotate my neck and spine keeps me safer in the car and in the chair. I can, on a good day, stand and fold the laundry as it comes out of the dryer. My locked and overstressed wrists, which are not designed as weight-bearing joints, are not in constant pain and now rotate rather well. I can bend and reach my entire body to dry off after a shower. I have toned muscles I didn’t know I was moving and could not feel. I am healthier and have more energy and stamina. And I am so very grateful.
I am poised to embark on a new level of adventure, taking the Kaiut teacher training with Francisco in a few days. Since my diagnosis six years ago, there is almost nothing (including eating and sleeping) that I have done for eight straight days. Considering all I have learned, I believe I have chosen the absolute right thing with which to begin…again.
I want to acknowledge my profound gratitude and love for Iwona and Molly, who shared amazing parts of themselves and their knowledge with me. I want to thank Butch and Stacy for being so very happy for me, always. I want to thank Cindy and Michéal for being there to help me get there and smile. And to the Leap Community – you are the reason this works and you have all made the most profound difference in my life.
Thank you for reading my story.