Multiple Sclerosis And My Need for Bodywork

If tai chi was to be the principal way of managing my MS, I felt that my tai chi development was being hindered by preexisting conditions: poor posture, stiffness, and limited range of movement. The MS exacerbated the problems. I was less and less able to rely on lifetime habits of holding and moving my body. So four years ago I began a program of bodywork.

At first it was physical therapy, more than 20 sessions, in which I discovered just how stiff I was. The first PT observed that I was one of the stiffest persons he had ever seen. And this was after eight years of tai chi practice. In addition to making a wonderful new friendship with the PT Assistant, I learned that not only did I not know how to stretch but I didn’t know what a real stretch felt like. I got a taste and began a daily program of stetching but it was evident that I needed more.

The next phase was working with a chiropractor who had developed techniques for opening joints through powerful manipulations. Although the sessions themselves were painful, thankfully I never had any residual pain from the manipulations. Over several years, I began to experience expanded range of movement in all of my joints, many of which I didn’t know I had. The homework exercises preserved the changes and I noticed immediately a greater ease of movement in my tai chi practice.

I was making progress but knew more needed to be done. I began seeing another skilled body worker, a yoga instructor, who worked on trigger points to release the muscles that had become taut cables. She saw how I carried my weight forward and worked with me on the table and with floor exercises to get the pelvis and sternum activated. The cabling was my body's adaptation to forward leaning posture; the contracted muscles were holding me up. The pelvis had to be activated before the cabling could be released.

I was also fortunate to have a good friend who was completing her Feldenkreis instructor training who creatively used hands-on Feldenkreis. Her skills introduced me to the feelings associated with fluid and unhindered movement and how large changes were often the product of mindful tiny-tiny movements.

I am on a path leading to increasing flexibility. My deficits are so great that achieving normal range of movement, in many instances, is a remarkable achievement. I credit the bodywork, the teachings and skills of these wonderful people, with enabling me to step up my tai chi training as I go about reinventing my body movements to stay ahead of the MS progression. I can’t imagine where I’d be without their help.

The daily tai chi practice provides a disciplined sequence of movements that challenges me to integrate the changes brought about by bodywork. In effect, each tai chi practice is also a continuation of the bodywork.

Levels of Denial with Chronic Illness

Coping with a chronic illness like multiple sclerosis is coping with chronic denial. Whatever level of acceptance, I always seem to come across yet another level of denial. Denial, like relaxation, has an onion-like character, peel away one layer and another reveals itself.

This was brought home to me again this week. I often use hiking poles as a mobility aid. Here’s the rub.

I’ve usually thought of the hiking poles as a personal choice that I make depending on the situation and how I feel at the time. Now it is becoming clear that making a choice based on how I feel at the time contains within it another level of denial. I’ve been denying what is obvious to everyone, including myself, that my walking and my tai chi are two distinctly different modes of movement. I was sheltering a belief that movement is movement and that my tai chi should be crossing over wholesale into my everyday movement. It is not true for me. I move with confidence and ease doing tai chi; I walk like a drunk. Perhaps I will someday walk as well as I do tai chi. But for now, that is not the case.

Recognizing this denial allows me to replace “how I feel at the time” with a protocol. Under all social situations, regardless of how I feel, I use a single pole. (Using two poles is more efficient but flummoxes acquaintances and strangers—“What is this guy trying to do—practice skiing on a city street?”)

Now the pole comes out in every social situation outside the home, providing everyone with a universally accepted social cue. The cane announces that its user has difficulties with walking and balance. People know how to react.

It eliminates the little ways I put myself down when my walking and balance do not conform to social expectations regarding ordinary movement—such as how quickly I get to a door that is being held open or how much space I require to get by an object. I am unburdened by trying to live up to unspoken social expectations regarding how I move and we’re all much more at ease and probably safer as well.

Just Stand Up

Mmmm….Well I’ve been working on that correction for 12 years! A summary of “just” the changes I remember over the past couple of years necessary for “just standing up”: open ankles, sacrum action, heel strike to trigger sacrum, stretch connective tissue on front of torso, rib joint movement, spine flexing and moving forward towards sternum, sternum rises, shoulders going back and down with flexing of spine. And I have a considerable way to go before I “just” stand up.

Sensual pleasures of movement: tai chi and multiple sclerosis

Only with tai chi do I experience sensual pleasures from movement . Internal and external feelings become one. The pleasure starkly contrasts with the deliberateness and challenges of ordinary walking and getting around. Tai chi practice makes me at home in my body and the feeling is especially welcome. These feelings are present even when my tai chi form has multiple sclerosis wobbles and kinks.

Urgency, Multiple Sclerosis, Tai Chi

Living with a chronic and progressive disease creates a sense of urgency. My mantra might be: "Don't look back. Something might be gaining on you." -- Satchel Paige. Cultivating tai chi acknowledges the urgency without generating anxiety. Live and practice each day as it comes. Other choices are neither attractive nor helpful.

Cultivating Tai Chi

Cultivating the tai chi form is like going through a series of windows. Initially, the window opening is quite large. As I learn how to go through the opening, my body changes, there is a feeling of accomplishment, and then a smaller window presents itself, a sinking feeling that the accomplishment may be significant but not as real as I had thought. Something new is being experienced, a sense of wonder about a new bodymind experience, and the process begins again. If I am ready and open,the tai chi practice returns me to the beginner’s mind -- a Zen gift.

Beginner's Mind
Beginner's mind is Zen practice in action. It is the mind that is innocent of preconceptions and expectations, judgements and prejudices. Beginner's mind is just present to explore and observe and see "things as-they-are." I think of beginner's mind as the mind that faces life like a small child, full of curiosity and wonder and amazement. "I wonder what this is? I wonder what that is? I wonder what this means?" Without approaching things with a fixed point of view or a prior judgement, just asking "what is it?" Abbess Zenkei Blanche Hartman

Turning Elbows and a Training Mentality

I now distinguish between the years I studied and practiced tai chi and the years in which I have been training. It began with an instructor's group correction for turning of the forearm initiated from the elbow and not from the hand or wrist.

After 4 years attending tai chi classes three times a week and practicing regularly, it was apparent that I had very little movement or control if I initiated the movement from the elbow.

Over the next few months I worked on very small movements, focusing my attention and intention on the elbow. The initial rotation in my left forearm was barely noticeable. Gradually, I have learned how to move the arms through a full range of motions by turning elbows.

The connection between a turning elbow and turning of other distant joints in my body continues to reveal itself. One of my friends, a Feldenkreis instructor, is able to generate a visible flexing of the arch in her foot from a turning of the elbow.

The elbow correction changed everything and I mark it as a breakthrough and new beginning. From that point, my practice had focus. I had taken my first step in training.

Tai Chi as a Developmental Process

Advanced instructors speak of tai chi as a developmental process. The specific sequence is not identified in any detail in the tai chi literature that I've read.

As my practice evolves, I retrospectively become aware of short developmental sequences. For example, over the past year, the following sequence took place:

-massage and Feldenkreis work on hyper-stiff ankles
-novel sensations of movement in the ankle joints
-increased ankle flexion
-clearer heelstrike when walking and doing tai chi
-awareness of connection between ankle flexion and sacrum action
-movement-control over sacrum
-ability to shift weight in foot through the ankle
-hammer foot down initiated by sacrum action
-feeling of foot rooting

Of course each of these elements is a matter of degree, and I expect that each will become clearer as my practice advances.

A Stern Teacher

Part of living with multiple sclerosis is trying to make lemonade out of lemons. My MS presents opportunities to learn but the teacher is very strict.

MS gives strong corrections on my tai chi. The feedback is immediate. For example, doing tai chi kicks and leg separations, if there is a break in form my balance goes out. The MS leaves little room for fudging or muscling an adjustment. If I am not in the moment, I stumble. When I am generous, I think of my MS as a Zen Monk ready to give me a rap when I lose meditative focus.

Without the spur of MS, I would never have put so much effort into my tai chi training. In all likelihood, it would have been recreational and social rather than transformational.

Chasing Cures or Practicing Tai Chi?

Being proactive with multiple sclerosis boils down to either chasing or practicing.

There are many opportunities to chase a cure: diet changes, removing mercury fillings, bee sting injections – the list of possibilities, each with a plausible rationale, is out there—just google and chase.

The other path is to find a daily practice that is good in itself which leads in the direction of greater strength, suppleness, bodymind awareness, deeper understanding, and general sense of well-being. I find it in the practice of tai chi. Others may find it in something else: yoga, meditation, swimming or whatever.

I’m sometimes tempted to chase but always return to my daily practice. Chasing unsettles me. Practicing grounds me.

Internal Awareness with Tai Chi

My instructors would ask "what do you feel?"

Increasingly, my practice becomes internal. The awareness rides lightly on the sensations of internal energy movement. I am gradually learning how to rest in the internal movements generated by the tai chi forms. Can I reach this place in every practice? No. However, it is becoming more frequent.

Internal movement is generated by turning the lower belly and sacrum. Initially, by consciously using the muscles of the lower belly and subsequently allowing the movement to occur guided by intention. This is still very new.

These changes are particularly welcome: as multiple sclerosis moves in the direction of reduced movement, the tai chi wonderously improves movement. I can simultaneously lose and gain feeling.

Introduction to Reiki 1998

When I asked fellow tai chi practitioners what came next after experiencing chi, only one was willing to talk to me about her experiences. I discovered her and a few reiki practitioners doing a reiki healing at midnight during a week long workshop. Her advice was to get a reiki attunement to learn how to channel the chi into a healing modality.

When I returned home from the workshop, the level of chi coursing through my body was high enough that Linda refused to sit next to me. I was like radiator at full blast.

When I visited cousins in Miami, I had another strange experience. My cousin Jim found it extremely discomforting to be in the room with me; at the same time, their new baby was happy as can be in my arms. I called my tai chi/reiki buddies and was assured that it was not me or my chi but my cousin's problems with chi.

Several months later, I committed to attend a reiki weekend. Linda decided to accompany me. During the weekend we received attunements and instruction through the Master level.

Both of us look back to that weekend as one of the very important moments in our lives. We both still practice reiki.

I cannot say specifically how reiki and tai chi complement one another, but I strongly feel that they do. For someone with multiple sclerosis, the energy side of tai chi and reiki reinforces the healing properties of both modalities.

Openings

It was the last day of a 1997 summer workshop and I was doing warmup danyus. I felt the front of my hip joints slowly open(flex) much like large creaky hinges that had been stuck for years and then overdosed with WD40. I was amazed that the hip joint moved in that way.

In my years of teaching tai chi to people with special needs, I have never found anyone like myself who was unable to flex at the hip joint and didn't know it.

In tai chi, the terms open and opening are frequently used to cover a range of happenings and intentions. I now understand the opening of my hips not as an end-point, but as a matter of degree and in a sense, a gentle encouragement.

Music or Silence?

I was taught that tai chi was done in silence. Perhaps my teachers thought music would distract. Over the past four years, I have used Enya to accompany my practices and some of my classes without ever being scunnered. Enya seems to have tapped into the same source as my tai chi.

More Fun After a Thousand Practices

I’ve tried to imagine other experiences where the joy begins after thousands of practices. Perhaps playing music is close. The element of playfulness is part of the practice. Tai chi practitioners are often called players. I probably don’t give playfulness enough reign—there is always the business of doing what I must to keep mobile with mutliple sclerosis.

I remember the philosopher Johann Huizinga’s (Homo Ludens) distinction: It is possible to play in earnest but not possible to play if one is serious. His distinction resonates; making it part of me is another matter.

A Changing Body

I read an account by an advanced tai chi student who related how after thirty years he was continuing to experience changes in his body from the practice.

I often think of how my practice reflects the continuing changes being made in my body. As much as multiple sclerosis and aging take away capabilities, the tai chi continues to make me stronger in some ways than I was when I was younger.

When the impatience for mastery and the desire for perfection recurs, I think of the above anecdote and remind myself that a practice with continuing improvements is one of the gifts of tai chi.

A Permanent Cure for a Bad Back

In the Fall of 1993, I enrolled in my first tai chi course. We were two weeks from the end of the course, and I experienced the familiar twinge in the right side of my lower back indicating a prolonged back spasm was on its way.

For more than 25 years, I had experienced back spasms, about six times a year, sometimes disabling me entirely – missing work and the like, and always hunching me over to the right for weeks. I tried everything -- physical therapy, bad back exercises, manipulation, cold packs, hot packs. I was disciplined doing several back exercises daily. In spite of it all, the bad back persisted. The low point was a sea kayaking trip in which I had to have a power boat take me back. The bad back was a miserable fact of life.

Returning to the back twinge which signaled a new back incident -- it occurred while I was taking a shower early in the AM. I recalled from a tai chi workshop that a danyu, a warmup and strengthening exercise externally resembling a squat, was good for the back.

I parked myself in at the top of the stairs using using the railing to guide my descent. I did a series of danyus followed by a walk around the block. I repeated this sequence over the next seven hours -- resting as needed. It was my project for the day.

By mid-afternoon, I felt the back spasm break. I was left with a residual pain from the hours of spasming, but I was not hunched over. The twinge and the back spasm were broken.

I have not had a back incident of any kind since. I have been completely free of back pain for almost 12 years. I would continue with tai chi for no other reason. I was drawn to tai chi but breaking the back spasm was the hook that convinced me that tai chi was to be a lifelong practice. It was to be the first of many gifts I have experienced in the practice.

Feeling My Heels

It may not seem like much but it was a marvel to me. About two years ago, I suddenly became aware of feeling a heel strike when walking. Until that moment, I had never felt my heels in any distinct way. What is so strange is that I had no idea that I was missing anything. My gait had so much weight forward that my heels did not play any part in my shuffling movement. Imagine Jar Jar Binks with multiple sclerosis.

Feeling my heels was the result of months of exercises recommended to me by a talented body worker who taught me how to activate my sacrum, yet another undiscovered body part. The tai chi practice provided a way of integrating the new heel awareness into a more balanced movement.

The Gift of Chi

The setting was the June 1998 Taoist Tai Chi Workshop in Canada. The experience was the most profound of my adult life. Eight years later, I am just as grateful and wondrous over the happening.

It was only two weeks after the passing of Master Moy, the charismatic founder and Taoist healer. Our workshop instructor, Ben, was a dear friend and particularly adept at the toryu or turning movment, the core movement of the tai chi set.

Ben designed and taught the workshop as a toryu workshop. We were asked not to do any other tai chi for the first four days. Instead we practiced varieties of the toryu for seven hours each day: 10-12am, 3-6pm, and 7-9pm.

The teachings were a revelation and I found myself taking Advil am and pm. I first noticed the change Wednesday afternoon. It was disturbing and unlike anything I had ever experienced. I felt strong pulsing movements centered in my torso. I checked my heart repeatedly but could not detect any change of rhythm.

As the sensations intensified I felt as if my insides were a boiling cauldron. I was running hot but was not feverish. I took to my room, lay down, and observed the internal happenings which did not stop. I was able to sleep but awoke periodically with strong pulsing. Something had been turned on and I was both curious and mildly alarmed.

I asked my instructor and he stonewalled. I kept asking around among other participants and came across someone who was willing to talk with me. Late the following day during a long conversation I learned that the intensive work with the toryu had activated my chi. It was a good thing and I was much relieved.

I needed the next few months to process what had occurred. It soon became clear that it was gift, and especially welcome with multiple sclerosis.