Alone

I am in this body all alone. No one can travel with me.

In the everyday of social media and traffic jams, cell phones and checkbooks, I tie myself in knots of impatience and confusion. I lose contact with nature’s wisdom. That is when I fear my aloneness and where my disease might take me.

Will it take me into the endlessness of the desert where the horizon looks the same? Where you do not know if you stand at the edge or in the middle?

When looking upward at night, I see the same endlessness in the cosmic story and I am filled with awe. I feel fear as awe or awe as fear, mixing these two. And then I am one with the endlessness.

Death Valley

I never want to forget that I belong in Earth’s embrace. Inside me is the same fertility of the desert’s soil. My body places me separate, but not alone, like the glory of the flower reaching through the cracks. I experience a deeper joy in accepting what I cannot control.

I am not alone after all. I abide in Nature. I am an anchor in the endless waves of sand and space, held in Nature’s web, a hardy flower rooted between the rocks.

The people we meet on the road

There is something about travel that enables certain conversations and encounters that invigorate life. I want to thank the people I met on a recent trip abroad. Many whose names have been forgotten, but the experiences we shared will not be lost.

In an airport cafeteria in the Galapagos, a young woman with a guitar asked to sit at my table as she ate her lunch. She was from the UK, a muralist and recent college graduate. She had mapped together destinations recommended by others and connected with welcoming hosts through the community of “couchsurfers.” After traveling for 16 months through South America, she was now ready to return to school to become an art therapist. Her travels had lit her destiny, in a way, and she felt a strong commitment to a new career. There was hesitation about returning home, but the journey had given her a sense of self-knowing that both guided and grounded her.

The software engineer from Texas amazed me with his stories of backpacking through Southeast Asia and road trips with his mother. I found his recent photographs from Alaska and Yosemite, of winter and wide open wilderness, truly gorgeous. His dear mom, dressed in a sari with a coat that swallowed up her small frame, was both captivating and inspiring. He taught me the meaning of the sacred thread of Hindu faith. This thread is worn one’s entire life. When a radiologist recently asked him to remove it in order to perform an MRI scan, he considered his relationship with his religion and felt the call to cut it loose. So, the thread was removed. All of this I learned while heading back to Iquitos on the muddy waters of the Amazon.

Hikers

I feel deep gratitude to the many people we met during our trek through the Peruvian Andes with whom we tried our hardest to communicate in our less than fluent sentences and simple, but enthusiastic facial expressions. Thank you for your patient smiles and kindness.

When travel extends weeks and months, it manifests a rhythm of its own in the traveler. Open, adventurous, grateful, and curious describe the qualities of these individuals who seek out the experiences of the road. These are the people who will also touch and teach you.

Fear of being unattractive and living with multiple sclerosis

Flamingo

Physical attraction. Women never think we have enough of it. For a woman with MS, this fear is even worse. We know, at times, our body is deformed; weakness traps us. We will fall. Being uncomfortable in our own skin makes relationships extremely difficult.

How can we cross the line of intimacy? How can we allow a man to see us, when we have so much to hide?

A chronic illness may always be an unseen, unwelcome third partner in a relationship. Until we admit, first to ourselves, then to the other, how it feels. Not only are there fears about physical limitation or temporary spasticity, but also the fear of being unable. I fear being unable to remember or to follow a daily system sometimes. If I usually feed the dogs first, why would I one morning change my sequence? Feeding them after I shower instead of before is a break in routine and can be uncomfortable to all. Why did I get mixed up?

I am not a bad person when unfocused, just a distracted person. This happens to anyone, but I fear it is my MS taking a firmer grip. I fear my cognitive abilities have become impaired and then I judge myself. Because I feel I can’t be depended on, I describe myself as unworthy.

Even now, I question my right to be in a relationship.

Rainier Maria Rilke’s advice on relationships is “a good marriage is one in which each partner appoints the other to be the guardian of his solitude.” We confront our fears, so often hidden to the outside world, in the solitude that also grants us the freedom to find our wholeness. In marriage, we give each other the space to travel the twists and turns of our own path. We are guardians of the journey within.

Body image blinders

Waterton-Glacier International Peace ParkWhat a strange thought occurred to me as I was driving home today. I don’t hate my body. That morning in the shower, I remember catching my self in the glass door and I was startled to see my reflection. I glanced sideways. Yes, there is a little tummy. Hips have definitely widened. And, it’s okay. Instead of feeling the typical self-criticism, I felt pleased by my curves. Wow! I had spent years dieting and exercising to prevent the natural shape of my body to express itself. I was shocked to realize that someone (a boy, society) had turned me against my self to the point that I had seen my own form as ugly. Today, I wrapped my arms around my body and smiled.

I was recently reminded of how early these “body image blinders” cover our eyes. A 6-year old girl I once babysat spoke of not being hungry, of not wanting to gain weight. How could this be…a child who needs nourishment deciding not to feed herself? She was repeating the words of her mother. I thought about the power of our words and the importance of raising healthy children. Mothers need to be good examples.

Women can torment ourselves. The urge to self-assess is one that makes us better, but it can also spiral us into a loop of constant dissatisfaction. When we become unwell, I think this tendency can escalate. So I remind you to look kindly on yourself. We need to care for our bodies. If we limit self-care, our emotions can suffer. In the same way, if we follow a restrictive diet, we can starve our body of the nutrients it needs to keep us healthy.

Inner path

It was an April morning in 1989. I had just been informed that my disease would have a lifelong pattern of relapses and remissions, and might very well develop into the progressive course. Relapsing-remitting MS is unpredictable. Such a prognosis is as shocking as the actual symptoms. I felt my body had deserted me.

Did I have to learn to accept this condition? How could I lose my ability to open a jar, stand straight or sign my name? Was I becoming an invalid? I felt hopeless, completely devastated, and afraid that I no longer could do anything…until a friend suggested I pick up a copy of A Course in Miracles.

I opened the book to the first lesson: “I am not my body.” What a miracle to read these words. For me, they were the beginning of an understanding of how to live with a body that was not functioning as required. The words didn’t make much sense at first. If I’m not my body, then what am I?

aspen smallI had touched on matters of the spirit as a girl in Catholic catechism, but had left long ago. The Course, in small daily lessons, would give me solace. My perception of changes in my motor skills and control also changed. I stopped focusing on what I was losing. Multiple sclerosis opened me to the vibrant life of the spirit. Meditation worked to further my understanding of an inner life. A quest for inner meaning and truth was not dependent on functioning limbs. I was driven inward and actually discovered my body’s symptoms subsided.

What a gift my disease became as I understood what it offered. As months became years and my MS came and went, an inner commitment remained. My spirit path took many turns. Nature was often my teacher. When I took the time to observe the rhythms of the seasons, of life and death, I discovered an all-compassing harmony. Each relapse challenged me to ask why, and to accept that no answer would be forthcoming. By returning to my inner life, I could see where I had wavered or gotten off my path. Exacerbations became opportunities to turn inward.

My spiritual path and the path of my disease often worked together, bringing me back to my Source. I was reminded that I am not only my body, and that my inner voice needs to be heard. If I felt anger or self-pity during an episode, I knew my relapse would last longer or my suffering would be worse.

Even in a body that challenges me, daily joys can persist. It is my responsibility to see them.

Healing, I have learned, isn’t about a cure. It is about discovering an attitude of gratitude.

“A simple grateful thought turned heavenwards is the most perfect prayer.” — Doris Lessing

Observations about death and the passing of my grandparents

Dying sunset

Some day, we will fly beyond the confines of our body.

On dying, my grandfather expressed concern that “old people are preventing the young from achieving their future.” He continually expressed that this belief weighed heavily on his mind and spoke of not wanting to keep me from my future. My grandmother’s mind remunerated on the following: “I just want to lie down in the grass…and say, I am here. Put me to use.”  I often thought she was asking to give her body back to the soil, to allow her bones to nourish new seeds.

My grandfather passed in his sleep, while being cared for by a wonderful nurse and her family. I wasn’t with him, but I did arrive shortly after his death and waited with my mom for the coroner. I had never seen the face of death. There is a mask-like quality that wipes out the living. Breath is gone and the “light” turns off. The change left a body hollowed out like a tree trunk that has lost a living core. In that moment, I understood the body as a carrier, a vessel, for the spirit. With the spirit extinguished, my grandfather was a weighty object in a chair. The coroner carefully wrapped him in a sheet with the most gentle, respectful touch. There was something of ritual to his movements.

With the guidance of hospice care, my family and I were with my grandmother during her final days. We were able to assess and monitor her pain level and provide treatment accordingly. I had a distinct sense that we were supporting a natural process. In our society, it seems there is little attention given to medical treatment that begins first with acceptance. No one was fighting or resisting this end-of-life passage and, thankfully, for my grandmother there were no complications from illness.

I was reading The Tibetan Book of Living and Dying at the time. It was my guide. When the hour came to sit with my grandmother, I called upon what I had learned from this book and extended encouragement to her as she transitioned. I imagined her moving through the flow of her own life path. She rocked, her body folded into a fetal position. It was remarkable to watch. I felt she was returning to the beginning. She was preparing to be reborn.

I took a walk through Rocky Nook Park in Santa Barbara to think about dying. Standing in the dry creek beds, I imagined the force that brought rocks tumbling down mountain slopes to rest before me. I sensed the surge of water running past, sculpting and chiseling: exposing surface, creating form. The course once traveled by each massive stone forever etched in dramatic grooves across its face. I thought about how we touch this earth and each other with our uniquely amazing and beautiful lives.

Losing my life on Wall Street gave me back my life

Life back then was very stressful – I ran in Central Park at 5:30 a.m., jumped on the subway and arrived to my 23rd floor office for a day of meetings. central park

I was the one who had to answer all the questions, to know the direction of the stock market, to provide the predictions. I was in a whirlwind needing to pretend I knew all the answers. I thought I enjoyed being in the middle of making money, and scouting out special situations or corporate changes that could surprise to the upside. I was living on the edge, quite literally, trying to see into the future.

When the day was over, I found myself in a canyon of grey buildings with people I didn’t know all rushing away. I felt cold and detached from others. I was a mechanical being. Only during my morning jog in the park was I aware of nature and of being in, if not a part of, the natural world. The birds sang in the morning, awakening with sunrise. I forgot them soon after I jumped into the frenzy of Wall Street.

I knew I could never return to that life, after I was diagnosed. I was a child learning she couldn’t go back to the playground. Now, I recall the feeling of loss and realize how it helped me grow. It pushed me forward. I made the decision to create a new life for myself, and now I live on a ranch in “nowhere, California.” I couldn’t be happier.

Do you look back at some of your losses and see them as crossroads in your life?

Lessons from energetic chiropractic treatment

During my recovery from Lyme disease and chronic pain, I experienced many different forms of bodywork. I particularly enjoyed and benefited from treatments with an energetic chiropractor. His technique involved releasing patterns of tension and structural distortion. Adjustments were made by applying gentle pressure to specific areas of the spine to initiate a process of change in the nervous system.

At the conclusion of my session, I found I often reached for my journal to note an insight. Through these treatments, I learned as much about the condition of my physical body as I did my emotional state and the mental concepts I used to define myself. I experienced many breakthroughs. I would like to share a few of these notes.

1: I have been hiding underneath my shell! The curve in my back returned. My neck stretched. I could feel the pain in my right leg, but my perspective changed. It is a single pain in my body and my body is so much larger.

2: I sensed incoherent communication between my back and pelvis. Give it space! Through space, comes healing. Be the space that surrounds this tightness.

3: I am powerful. We are all powerful.

4: Who built the bird’s nest in my neck? You can consume and waste a lot of energy when you try to fit in. I need to stop pushing myself into “hand-me-down” models.

5: Body feels like a bag of sand. I am learning that a change in one place can shift another place.

I believe good bodywork speaks to us on many levels. My sessions allowed me to learn. I heard a voice, one might say, and received new information and healing guidance. Energetic chiropractic, as a practice, does not judge. I have often felt that practitioners in other areas have wanted to realign me according to some ideal. Energetic treatments actually release blocked energy to enable better integration. I believe it works with our bodies in a very positive way.

Facing the guilt chronic illness can cause

With multiple sclerosis, as perhaps any recurring-remitting disease, we may feel responsible for recurrences. In fact, we are not. This disease has a mind of its own and doesn’t follow our wishes. Recurrences don’t just happen because of something we did – guilt over flare-ups may only add to the severity. Stress is something we can sometimes control, and to that extent I do claim responsibility for recurrences.

Personally, it has taken over twenty years to create a lifestyle with minimal stress. Finding a calm partner and a calm environment has been a gift, but not without a number of sacrifices. I had to let go of life’s “goodies” before I learned how “un-good” they were for me. The active social life I had thought was fun was stressful, and maybe not that much fun. The career and busy life that once defined me were also stressful. Living without all of this has enhanced my health.

To take on feelings of guilt whenever an exacerbation occurs is like playing God. It is not your fault. We can’t blame the illness away. We can learn to make different choices that will reduce stress. I choose to look at my activities or state of mind prior to the recurrence and identify possible stressors. Then I accept that I still have this disease and let it go.

Animal affection

I was visiting Alice Keck Park Memorial Gardens in Santa Barbara for an after dinner stroll. This lovely park has a rather large pond at the center with turtles and ducks that seem to comingle quite peacefully. There is something about our dogs and cats, and creatures who waddle, that stir us to communicate. We look into each other’s eyes and something inside of us opens.

Park and duck

I felt the need to speak and, looking toward the pond, greeted the ducks with a boisterous “Good evening, fellas.” In a flash, a white duck turned, separating from the others, and began to swim toward me. A white duck full of feathers floating on the water; so soft your heart would melt. He continued in my direction, until he was out of the water and on the grass. Once he stood next to me, he stopped and looked up. I was stunned, and overcome. Overcome with a feeling of affection for this brave little duck that had just crossed the line between wild animal and domesticated companion.

Then we started to walk. Slow at first, then a little faster: in a straight line, then swerving in a zigzag. He moved with me. I laughed with delight and amazement. He may have learned to find crumbs of bread in the hands of his human visitors, but with me he seemed intent on a game of chase. I was almost convinced he was going to follow me out of the park. When we reached the farthest edge of grass, he suddenly seemed to know it was time to return to the pond.

As I walked back to my car, I felt a buzz in my body. A vibration I can best describe as love mixed with a healing energy. There is nothing quite like animal affection. If you are moving through an undiagnosed condition or chronic illness, I encourage you to find an animal who responds to you. A wagging tail reminds us we can both give and receive affection. I believe this is important for maintaining a sense of connection and supports our health. Discovering how to care for an animal provides comfort when we are unsure how to care for ourselves.

Even delighting in the movements of a bird’s wings will slow you down. Moving through illness requires us to change and adapt in so many new ways. Often, the slowing down is the most difficult. I spent many afternoons, lacking the energy to get out of bed, curled up with my dog. I felt safe with her next to me. And, the day somehow seemed less difficult. Instead of feeling my limitations, I let my hand rest on her soft head and felt the comfort of knowing I was there for her.