My Fluid Body Yearns For A Stronger Container

I like to think of the body as a fluctuating, fluid event, rather than a fixed object.  However, this crazy cancer is challenging my ability to stay connected to my fluid identity. I have devoted the past 15 years of my life to Continuum practice and the frame of reference that accompanies this has enriched my experience of life, kept me sane and feeling whole when nature-gone-awry has caused me to (temporarily) feel somewhat deranged and coagulated.

There always needs to be a balance of freedom and stability. Putting water (freedom) in a glass (stability) makes it far more useful. The same is true for the living human body. There is a balance of freedom and creativity that needs to be held within a meaningful structure. We all have different needs at different times, and the balance point between the 2 modes of being is not always in the middle. Some people tend to be energetically diffuse and chaotic. These people thrive with a little more structure. I, on the other hand, have no problem being grounded and linear, so I thrive in a more unstructured environment. Everyone needs some of both. 

In my never-ending quest to understand embodiment, especially my own, I have embarked on a new “exercise” regimen. I put the word “exercise” in quotes because the activities I do that might be called “exercise” are usually somewhat unconventional. I rebel against excessive form. Whether it is yoga, Tai Chi, Chi Gong, or Zumba, I can't stand having someone in front of me telling me what to do. I'm just not a good follower. But due to my extreme circumstances I have had to branch out, receive help, and add some physical exercise that's a bit more "mainstream" to my Continuum practice. I need to summarize a bit of history, so that you understand my context and condition.

I spent most of November, 2009 through February, 2010 lying down. My only form of physical activity during that time after I stopped working was quite subtle. I spent a great deal of time in bed doing meditative, creative imagination/imagery-based Continuum dives. I was in too much pain to move very much, and I was unable to rest in any position other than flat on my back. I would bring my attention to my breath, and attempt subtle wave motions throughout my body. But mere breathing was excruciatingly painful. I couldn’t focus on spinal motion, because it disturbed my tumor-ridden sternum, ribs, and clavicle. My hide-in-a-cave-and-don’t-move survival mechanism immobilized me. To top it all off I was petrified (literally hardened and immobile) of fracturing something. My doctors had warned me to not cough or sneeze or roll over in bed because I could easily fracture one of my diseased bones.

As I began to respond to all my various forms of treatment (removing my ovaries, taking an aromatase inhibitor to inhibit estrogen production, acupuncture, various supplements, hands-on work, meditation, etc.) I began to be able to do simple things, like taking a walk. By the time late January rolled around I began to panic at my degree of deconditioning, but I still couldn't do much about it. Walking and subtle Continuum weren't enough. I didn't yet realize that I hadn't hit the bottom of my atrophic decline.

It really wasn't until about a month ago that I fully got how much physical ability I had lost. Part of the 25 pounds I have lost is muscle. By April I realized that in addition to being immobilized by pain, I had developed pain from weakness and lack of support. I didn't have the strength to lift my arms over my head. My knee pain and difficulty getting out of a simple chair was in part due to my wasted quadriceps muscles. To make matters worse, joint pain is the most common side effect of Arimidex, and I have a whopping case of it: neck, back, shoulders, hands, hips, knees. Thank goodness my feet and elbows have been spared, but that's about all. With all my medical knowledge and understanding of how the body works, I couldn't believe this was happening to me.

I'm not sure why, or if understanding even matters, but it took until mid-August for me to really get what I needed to do. Perhaps it wasn't until then that I was able to do what I needed to begin the climb out of my predicament. Even if I had understood what was happening a few months earlier, I'm not sure I could have done much about it.

What I realized last month was that I was suffering from massive atrophy and deconditioning. Since it happened in a very specific way for a very specific reason, I needed to address it in a focused and specific way. I am normally not a reductionistic fan of isolating muscles, but I have come to understand that this is exactly (part of) what I need. I have begun doing what I used to think was dreaded, linear, and repetitive; I am riding a stationary bike, using a stair-stepper, and an elliptical trainer. At first, I could only go about 3 minutes. It was painful and exhausting, but I realized the only way to get over feeling this way was to do it and move through it. I committed to riding 3 minutes, 5 times a day, and by the end of a mere week, I was able to go 6-8 minutes at a time. It has taken a month, but now I can go 20-30 minutes at one stretch. My entire body, particularly my knees are feeling considerably better.

During this past month I sought out the help of a physical therapist who helped me hone in on my rehab needs. I began strapping on wrist and ankle weights and doing some mainstream  strengthening exercises. I got a pole (a broom stick with the broom detached) and at first had to use my decent arm to help lift my useless arm. After a few weeks with the pole to guide my arm up, I was lifted to the next level of new-found abilities, even if my hands were buzzing from holding on to the pole. I do love good exercise toys, so I've enjoyed playing in the PT gym.

Since I can't handle too much structure, as soon as I was able, I began making up my own exercises, doing "made-up Chi Gung," and turning all my exercises into a Continuum Jungle Gym Dive. (If you don't know what this is, get my book and read Chapter 7 and go find a class.) Isn't this what it's really all about anyway? Isn't this (part of) what Continuum is - following inherent movement and allowing it to guide you? I follow my own Chi and allow it to move my body, which unlike a mere month ago is now a bit more able to move where the Chi wants to go. I used to think this "made-up Chi Gung" was a goofy rebellious activity that I invented, and then I met a master of Ba Gua (a Chinese martial art) who said that this was the ultimate practice of this art.

I think part of what helped me during the past year was my ability to lie there on my back and imagine myself, like in Avatar, moving painlessly and gracefully. I would fade in and out of my pain-ridden, half-sleeping state imagining myself running through a forest, swinging through trees, swooping down a mountain on skis, ice skating on deep edges, or swimming like a dolphin under water. The power of our creative imagination can keep the body going when we are unable to go there in the literal physical sense. This is one aspect of the bridge that Continuum creates that allows people to access to healing.

I have devoted the past 15 years of my life to a very unstructured Continuum practice and now I need to integrate a bit more focused, structured rehabilitation into my self-care. I can't do one without the other. My fluid yearns for a stronger container.

Strengthening Bones By Squeezing Their Fluids

In preparation for my next entry, here is a NY Times article that discusses something I've always suspected about the way bones behave during exercise and movement:
http://well.blogs.nytimes.com/2009/11/11/phys-ed-the-best-exercises-for-healthy-bones/

In my book (pp. 179 - 183), I discuss how using your bones creates forces of stretching, pushing, pulling, twisting, compressing, and bending. Every time you exert any influence or pressure on a bone there is a corresponding change of shape and an accompanying electrical charge, called the "piezoelectric effect." This influences the bones to remodel to accommodate the motion and weight distribution that they are being asked to support. Connective tissues will thicken where support is needed and thin where they need to yield. Minerals will be laid down to allow for support in areas of strain and weight bearing. This is generally how bones are thought to be strengthened by weight-bearing exercise.

This article explains how during the movement of exercise, bones bend, and fluids are squeezed from one part of the bone matrix to another. The extra fluid inspires the cells bathed with it to respond by adding denser bone.

I've been wondering how this applies to my tumor-filled bones. Pain in my sternum, ribs, and clavicle initially immobilized me and prevented me from exercising, but now I think I have more fear of pain than actual pain (I'm talking about the pain in my chest; I still have actual pain in my hands and several joints.) Do I want/need to stir up the matrix of a tumor-filled bone? Will this help my immune system have access to the tumor to break it down? Or will squeezing the fluid through the cancer infiltrated matrix potentially spread it? There is no medical expert who can answer this question, so I just have to live into the answer as I act according to what feels right to me.

Making Sense With Stories

Nothing happens quickly in my life these days. I’m on a slow boat out at sea with no view of land and I can’t tell if I’m moving. I’d go mad if I tried to figure out where I am, so I surrender to the pace of how life is right now, and let go of the need for reference points.

I have nothing new to report about my physical health.

In this limbo where I live these days I feel compelled to tell stories: stories of my childhood, stories about my family, stories about people I've known and loved, strange things I’ve seen and done. Since I can’t make sense of my actual life, I enjoy making sense of the stories I like to tell about my life. I love to find a thread of connection and weave it through multiple scenes.

I’m particularly interested in stories about my mother. She is a mystery to me. Gone nearly 32 years, I’m not sure if I remember her or if I only remember the stories I like to tell about her. I’m not sure if it matters which it is. Whatever the case might be, I enjoy memoir writing, so here is my latest:

My mother called out from her deathbed, “Be sure to get something to eat before you get on the plane,” as I exited her hospital room for the last time on the way to the airport. I assured her that I would, and I realized that this would probably be my last exchange of words with her. She would die a few days later from the ovarian cancer that had ravaged her for the past 5 years. We began and ended our life together with great concern for nourishment. I've been trying to get enough nourishment for "the long ride home" since that day.

I was 21 and living in New York City, pursuing the adventures of an urban college student and finding exotic odd jobs. To finance my education I searched for work that fit my school schedule. I was a pioneer of dinner-time telemarketing, selling cremation packages to complete strangers over the phone. I drove a truck around Manhattan delivering newspapers and magazines to newsstands. I was a waitress in a restaurant that was a front for selling cocaine. I had nothing to do with the drug deals, but I benefited from the large tips that were often left afterwards. I race-walked the city streets for a foot-messenger delivery service. I worked for a Catholic hospital, who had me removing stamps from envelopes with a clothes steamer so that they could be re-used. I volunteered as a subject for medical, dental, and psychological experiments at Rockefeller University that were well-paying and (relatively) non-invasive. I couldn’t bear the thought of a mundane job.

In 1978, the year my mother died, I was studying psychology and neuroscience, and working in a hospital managing the admissions and outpatient billing departments by day. By night, I frequented music clubs: CBGB, 7th Avenue South, Sweet Basil, Max's Kansas City, The Bottom Line, and The Bitter End in search of the cathartic and inspiring effects of live music that I so desperately craved.

I discovered the dress rehearsal schedule at Lincoln Center and roamed the complex of Avery Fisher and Alice Tully Halls, The Metropolitan Opera House, and The Julliard School yearning for a free taste of the week’s performers. It wasn’t entertainment I wanted; it was medicine. Experiencing live music penetrated my being and connected me to something greater than my seemingly small, suffering, barely post-adolescent self. I desperately wanted to soothe my tortured soul.

My mother entered Julliard in 1942 to study opera. In addition to the classics she sang 1940s girl-group pop songs in 3-part harmony. She sang jingles for radio commercials. She played the piano, the upright acoustic bass, and the glockenspiel. She had a flare for drama and effortlessly exuded the tragic personas that characterize most operatic roles. Throughout my early childhood she would intermittently and quite unexpectedly slip into character. She might fall to her knees on the kitchen floor and break into an aria from Madame Butterfly after burning a spaghetti sauce. Breaking a dish in the kitchen sink could drive her to burst into a lamenting passage from Carmen. Finding an empty box of cereal she once belted out, “No more rice crispies. . .” to the tune of Pagliacci.

The war came and ended her musical education. There was no money for tuition or for the train she needed to take her from her home in Spring Valley to New York City, just 30 minutes to the south. Everyone was joining the war effort and she took a job at Camp Shanks, an army base near her family home. It was there in 1944 that she met my father. Post-war marriage and motherhood precluded her singing career. She became a caged bird.

I couldn’t carry a tune, but I could perceive music and all its nuances, and I relentlessly searched for opportunities to be immersed in musical performances of all varieties. I discovered the free chamber music at The Metropolitan Museum of Art every Friday evening. If there was a free concert of any sort, I was there in a heartbeat. I am a sucker for a schmaltzy Broadway musical, but couldn’t afford the ticket price as a starving student of the late 70s. Security was lax in those days, and I discovered that I could lurk around theater entrances at intermission and sneak into the second half of shows, which always offered the best and most cathartic and cheesy songs in the grand finale.

The day before my mother died (somewhat unexpectedly) I traveled to Philadelphia to accept an offer from my cousin Rick, a dentist, to extract my impacted wisdom teeth. I awoke from anesthesia to gauze packing in my mouth and the news that my mother had died. I spent the night at my cousin’s home and they took me to the airport in the morning with a baggie full of extra gauze pads and a bottle of pain killers. As the flight took off I could feel the pressure rising in my gums. I bit down hard on the gauze to stop the bleeding, but I couldn’t compete with the change in atmospheric pressure. I began to bleed profusely from all 4 incisions. As soon as the fasten-your-seatbelt light went out I got up to run to the bathroom, and blood poured down the front of my shirt. The flight attendant who met me in the aisle screamed and fainted. Passengers around me began to panic and pandemonium ensued.

I cleaned myself up as best I could and a more composed flight attendant fetched me some ice packs. I landed in Miami 2 hours later looking like a boxer who lost the match.

I arrived at my mother’s funeral after an emergency visit to an oral surgeon who did his best to help patch me up. I was drugged with Vicodin and nauseated from antibiotics on one of the worst days of my life, and I had to get back on a plane to return to work and school the next day. My mother was dead at age 53 from ovarian cancer, my ravaged mouth was swollen and infected, and I had no way of getting something to eat before the long ride home.