Tag Archives: dealing with illness

Pain Free

IMG_3098Sitting by the fire looking out over the snowy March landscape outside my window, I think of Emily Dickinson, a writer who perfected her craft as she dealt with health challenges throughout most all of her short life. My destiny has been the opposite. In uncompromising good health until a few weeks ago, I have avoided having to perform creative activities, or the simple tasks of daily living while being sick or in ill health.

A bout of the flu here, an allergic reaction there, mostly I’ve been blessed with opportunities to put my whole self into whatever projects and goals attracted my fancy. Like most people, I’ve been unrealistic at times, creating stress and strain by demanding more of myself than is possible for a single human being. Perhaps we identify our limits by pushing past them on occasion. Perhaps we stretch our capabilities by using the second wind that appears after the first one dissipates.

In my 30s I got good at pushing myself beyond my limits and then with the help of artistic practices, learning how to heal into a place of ease and balance. Later on, there was the juggling act of family roles and professional goals, self-care practices to stay healthy while supporting family members going through their own health challenges.

My initiation into the world of ill health began with sixteen days of excruciating headache pain. I became engrossed in symptom relief; hot showers and cold compresses, Advil, essential oils and naps while we hunted for medical professionals who could get to the bottom of it all and return me to the world of the well. Occasionally, there were short opportunities for normalcy, to teach a class or attend a dance concert, but life as I had known it seemed long ago and far away.

Finally, dramatically, I got to the right professionals, got the correct diagnosis and most importantly, the potential disaster of losing my eyesight was averted. Gratitude for that as I live into my new role as a patient in recovery.IMG_3099

My father always said, there’s a bit of poison in every medicine, and the miracle drugs western medicine has developed are no exception. The challenge now is managing both the short term and long-term side effects of the medication that is keeping me pain free.

My view of what’s realistic and doable under my present circumstances demands constant discernment. I must be cautious and careful, mindful of what energy is from the medicine and what energy is truly my own. Slowly, carefully, I’m returning to the physical practices that have kept me healthy in the past; a half a yoga class here, 45 minutes of Zumba there. Health challenges are always a reminder of our fragility but also of the gifts of a good night’s sleep, the love and support of friends, and gratitude for the opportunity to move pain free throughout our world, for however long that is possible.

 

Love Sweet Love

What the world needs now is love,” lyrics Hal David, music Burt Bacharach

1-jyoti-black-hatI’m in the shower, preparing to attend a celebration of the life of one of my dearest long time friends, Jyoti King. The first lines of this song come to me….”love sweet love. It’s the only thing that there’s still too little of.” I guess it would be natural to think that the world has less love now that Jyoti’s left it, but the event organized by her husband Randall last Sunday, involving 60 or so friends and family members, taught me otherwise.

We gathered in an upper room of a restaurant in downtown Fort Worth Texas, and read Jyoti’s poems and other writings out loud for nearly three hours. Taking turns we added our own stories of Jyoti, whose life has meant so much to each of us these past 30 years. I spoke of my vast personal indebtedness by quoting one of my favorite African sayings, “I am because she is.”

Jyoti and Randall were midwives for Rich and I, for the behavioral health clinic we co-founded and directed, “Iatreia Institute for the Healing Arts. Jyoti was clinic manager for most of its ten years. She helped edit my first book, Stillpoint: The Dance of Selfcaring, Selfhealing, a playbook for people who do caring work. She left the clinic briefly to pursue her writing, but when my youngest son was diagnosed with AIDS, she returned to support me. When a year to the day later, her son was diagnosed with AIDS, we wept together, fearing we’d taken this sister bond too far.

When my friend Rose asked me to come and be with her as she was dying, Jyoti, a former childbirth midwife, encouraged me. “It’s in the coming in and the going out that there is the most light, when the veil between the worlds is lifted. It’s an honor and a privilege to be present at both occasions.”

Jyoti’s exit was one of the long, long, goodbyes that people diagnosed with Alzheimer’s and their family members endure. She and her husband and friends lived this journey for 12 years, before her death last month. There were many stories of lessons Jyoti taught before she got sick. Her son, whose ‘s been sober for 25 years now, told how no matter his mistakes, his mother always forgave him. When he had to go to prison Jyoti washed his feet to protect him. “She told me, keep remembering, you are just a visitor there.”

I shared some of the gifts Jyoti gave me during the course of her disease. Shortly after she was diagnosed I moved to Pittsburgh but I traveled back to Texas often. I always visited her, first in her home and then in the memory care center. Each trip on the plane I would caution myself, “She may not know you this time. Get ready for that.” But, though she eventually lost most verbal language, she always knew who I was. Perhaps better than I did.

Once we walked together in the garden of her home when she was still living there. I noted that she felt unsteady on her feet. Her once good coordination would flounder and she’s grab my hand going down stairs or on the uneven path. Having been a nurse, when she entered the memory care center, she saw herself as a nursing assistant, always looking out for the other residents. A film aficionada, she advised a staff member on movies the community would enjoy. On one visit she brought out a musical instrument, and played and chanting for me.

sheila-and-jyoti-2When my second book was in manuscript form, I brought it with me on a visit. I told her I knew she wouldn’t be able to help me with this book as she had the first one. “But I’d like you to bless it,” I said as I placed the binder in her lap. There were no words, but she took the binder and gently hugged it to her heart. She smiled and we both knew we were doing a ceremony.

On what turned out to be our last visit, I found her in the parlor of the memory care center alongside other residents. They were all seated before a television displaying a blank screen. She was rocking in a rocking chair and coming closer, I heard her singing to herself. I couldn’t identify the song but it was clearly a Texas boot-scooting two- step.

Our Lady of the Broken Wings

“You’re not as you were,” the doctor tells me as he shows me the x-ray of my shoulder. The picture has little meaning since I’m not totally clear on what the shoulder bones are suppose to look like. It’s three months since my fall, and after he directs me to push against his hands and reach up overhead he declares, “you are at 80 percent.”

IMG_1511I agree with his assessment but let him know I will not be satisfied until I have regained what was for me, a full range of motion. He’s careful to make no promises. He tells me to make an appointment in three months and continue physical therapy. If I am not satisfied with my recovery by then he will do an MRI and see whether there is any surgery that would help. If I’m satisfied with where I’m at that time, I can cancel the appointment.

Standing in the examination room with my husband as my witness I am grateful for yesterday’s conversation with Susan, a dancer friend from Chicago, about her own recovery from a shoulder injury. “I’m at 100 per cent. I’ve gotten it all back,” she says as she moves her left arm in a gigantic circle overhead and reaches behind her. She looks straight into my eyes when she says, “I wanted you to know that. It’s possible,” and then she tells me how she did it. Physical therapy twice a week, 20 minutes of exercise three times a day, and Reiki sessions weekly to deeply relax the muscles that are constricting the movement. In other words, it takes work but it’s doable.

At my favorite dress shop yesterday Helen, a woman who claims to be older than me though she won’t say how much, lifts her arm upwards to show me her range of motion. Her shoulder injury was more than five years ago and her arm is about like mine is now, but she’s satisfied. Somebody else can reach the items on the top shelf. In other words, it’s not only what you’re used to, but also what you’re planning to do in your future life. I’m still a member of the “going for the gusto club” though I realize it takes more effort than it used to.

Another dancer friend and mentor Cynthia, had a shoulder injury a couple of months before mine, (her right, my left). She’s nearly back to a complete range of motion and her recovery program included all of the above along with her spiritual practice of making art with whatever comes into her life. We’ve commiserated about our “broken wings” and when I saw her at InterPlay’s national conference she gifted me an art piece she created out of found objects. It’s a shrine to honor our brokenness – individual and collective, to call on the energies of renewal and restoration, and to remember our bones, and other body parts need lots of love, commitment and a caring community in order to heal. 

The Consolation Vacation

When a fall in my dance class a month ago caused us to cancel our European vacation, my husband worked to came up with an alternative. The doctor made sense when he said, “postpone the trip till you can really enjoy it,” but we then both had a block of free time in our calendars. And we both felt in need of a vacation. I started physical therapy twice a week with a set of homework exercises to do twice a day so the alternative needed to be not too far away and in a place where I could continue my rehabilitation regime.

IMG_1435Meanwhile, I had promised my sister, who lives in the Detroit area, that I would accompany her to the Geriatric Center in Ann Arbor where she was to receive results of testing that had been going on for over a year. Before my fall, the center had rescheduled her appointment to a date when I was to be in Amsterdam. After we knew I’d been in the country, I suggested she keep that appointment and I’d figure out how to get myself there.

On his walk one early morning, my husband came up with a plan – we could drive to Cleveland, only 2 hours away, and visit the Rock and Roll Hall of Fame, which turned out to be a “don’t miss it destination.” http://www.cleveland.com/rockhall/#/0  We’d stay overnight somewhere near my sister’s house and pick her up the next morning to take her with us for a short vacation. On the way back we’d go through Ann Arbor in time for her appointment.

I found a town, Saugatuck, known as the Art Coast of Michigan http://www.saugatuck.com/index.asp only a three-hour drive from my sister’s  house. There would be no sailing, deep-sea fishing, kayaking, or dune buggy rides for me.  I’d need to be satisfied with a view of the water from the broad roof deck of our well-appointed condo. I was able to visit the quaint shops and art galleries of the village, survey the history and art museums, and take a ride on the country’s last chain ferry. An evening cruise on the Star of Saugatuck paddleboat was especially lovely, as were the few hours we spent on Oval Beach, one of the best beaches in America, according to systems that rate such things. But a special highlight, which seemed a meaningful chance encounter, was our visit to nearby Holland Michigan.IMG_1412

Monday’s weather forecast had been for rain so we decided to drive north a bit to a larger city where there might be more to do indoors. Arriving in a rain torrent, we drove to the Windmill Island Gardens and learned they had the only authentic windmill outside of the Netherlands. We stayed dry by finding lunch in a Dutch café and realized that on that very day we had been scheduled to disembark our river cruise in Amsterdam. To celebrate that realization, when the sky cleared we went back to the gardens to climb the windmill – no passport needed. http://www.holland.org/listings/Windmill-Island-Gardens/74/  

As to my sister’s health, things are still not as we would want them to be but she got some good news and hope from a talented doctor who is determined to get to the bottom of her mysterious symptoms. 

Undoing the Damage

IMG_1356-1 It’s been a month since the fall that changed my life and I’m now beginning the restoration phase of the project. Last Thursday I had an evaluation at the physical therapy clinic in my neighborhood where I was given a few passive exercises to begin undoing the muscle tension that prevents me from having use of my left hand and arm. As I now understand it, when my bone broke, it enlisted enormous help from the muscles in my arm to lock it in place so the broken pieces could reconnect and fuse. And for the past month my part has been to hold the arm in a fixed position through the use of a sling, which I wore every day, even at night while sleeping.

I’m loving being able to let go of the sling for all but the times I’m in a crowded public space and need to signal other people to avoid bumping into my left side. I’ve also worn the sling when I’m teaching InterPlay to remind myself not to try to use muscles that have lost most of their strength. Strengthening will happen in the third phase – after the bones are securely mended.

As I’ve begun the exercises to reclaim some flexibility, the emotional challenge has been significant. I’m brought to the edge of tears, not just from physical pain, but from the feelings of shaky vulnerability that become ignited, like a bird with a broken wing continuingly attempting, but not quite able, to achieve flight.

Not surprisingly, since memories are stored in our bodies, working with the inner muscles close to the bone activated a memory of an incident that happened during a bodywork session I did 30 years ago. The practitioner working with me as I lay on the massage table held my left shoulder in her hands. Sending my breath into that place, and with her help, I was able to release tension from deep inside my shoulder, which coincidentally was the same shoulder that I’ve now broken. The immediate aftermath was a sensation of deep chill and my whole body began shivering. When I asked her what this might be about she said simply, “It’s fear.”  

A few minutes later when I went outside into the streets of New York City, I experienced that shoulder as porous, and the wind as moving through open spaces I had created within it. I never was quite sure what that was all about but I never missed whatever I’d let go of and I’m hoping I won’t miss the tension I’m working on letting go of now.  

Falling: Aftermath

magnetIt’s day 24 since my fall in a Sunday morning dance class ended my life-as-usual routines. Instead of taking a Zumba class this morning I will sit on a chair in the hallway outside the bathroom door, set the timer on my cell phone and use a pulley apparatus to slowly and carefully, exercise my arm and shoulder. When the good arm lowers the wounded one rises. I concentrate on listening deeply to how my body is handling this simple yet dramatic challenge. The goal is to introduce flexibility while not disrupting the proper placement and alignment needed for the bones to heal on their own.

Since my fall I’ve heard many stories of other people falling, including one of my long time friends Jyoti, who has lived in a memory center for close to 10 years. According to her husband someone left a suitcase in the middle of her room while she was sleeping, and when she woke and began moving about she tripped over it. No broken bones but lots of bruises that needed a couple of days in a hospital.

Last week my neighbor Claire saw me walking with my arm in a sling and she offered to check with me the next time she goes to the grocery store to see if I might need anything. A couple of days later she called. “I’m sorry I won’t be able to follow up on my offer to bring you groceries,” she began. “I’m in a rehab center after taking a fall myself during one of my power walks in our neighborhood.” The culprit was an uneven sidewalk, the outcome two broken bones in her left wrist, bruised ribs, and a sore left side

“Falling is part of life” according to the refrigerator magnet my friend Lynn brought me. She had her own encounter last summer with falling and breaking her heal when she walked out of a restaurant in Lawrenceville and turned her ankle in a hole in the sidewalk. After surgery and relying on a boot and crutches and the generosity of friends to get to work and back for 6 or so months, plus lots of physical therapy, she’s now an inspiring example that healing does happen.  IMG_1162

The second half of the magnet’s message, “Getting Back Up is Living,” challenges me to not focus on what I’ve had to cancel, (European vacation, grandparent trip with my granddaughter), or things I can not do (driving my car, taking dance classes, and ballroom dancing with my husband), but on the lessons being provided. I’ve become aware of how attached I am to my competencies. The 4 year old inside me who was ecstatic about being able to tie her own shoes, is still discouraged at herself when she cannot do that or other more important tasks. Looks like she and I are getting the opportunity to relearn many basic skills. I hope we’ll be like we were the first time around, proud and eager to let everyone know of our accomplishments so they can celebrate each small but important victory with us.     

The Fall

Paramedics My usual Sunday morning ritual when I’m in town, is to take an 8:30 am dance class at my nearby fitness club. Three days a week I take Zumba, the dance workout that draws from the Afro-Cuban rhythms of the salsa, mambo, samba, and cha-cha. But Sunday is an eclectic modern dance class consisting of simple movements and phrases our teacher Laurie has created and taught in her children’s classes. After a stretching warm up we get our heart rates up as we waltz, skip, slide, and jump. And as with all the dance classes I’ve ever taken or taught, we leave class feeling energized and relaxed in ways that seem to last throughout the day.

On this particular morning, which was to change my life dramatically, the studio was humid, (the air conditioner had not been turned on yet), and the surface of the floor had become sticky. As we traveled across the floor in sliding motions, four counts facing our partners, four counts turning our backs to them, my feet stuck to the floor and my body kept moving. Failing to get my feet back under me, the movement pattern ended in a thump and a splat, with me sprawled out on the wooden floor facedown on my stomach. The pain throbbing in my left shoulder told me, “DO NOT MOVE.”

Struggling to catch my breath and to control the pain, I began audible deep breathing. A classmate, whose voice came from my left side, spontaneously became my breath coach. As if I were in the labor phase of childbirth, her reassuring voice encouraged me, “That’s it, just inhale, exhale, inhale, exhale.” From the center of the room, someone asks me for my husband’s phone number and I tell them how to reach him using my cell phone. I hear the person leaving the message on his voice mail, “Your wife has fallen in her dance class. She’s injured but she’s ok. She’s conscious and she’s breathing.”

Excerpt from “Warrior Mother”

People would often say to me, “This isn’t the way it’s supposed to be, children dying before their parents.” They said it when my thirty-one-year-old son, Kenneth, died of AIDS and again, seven years later, when my forty-two-year-old daughter, Corinne, died of breast cancer. When Corinne died, I got a phone call from my cousin, who had lost her own daughter in a car accident twenty years before. “This shouldn’t be happening to you,” she said, in an effort to comfort me. When I asked whom it should be happening to, she said, “Someone who hasn’t already lost a child.”

But I prefer not to think this way. When I am in that place of questioning the circumstances of my own life, I picture the gravestones in the historical cemeteries my history-buff father took us to visit as children. We kids would run from gravestone to gravestone, doing the math and discovering children our own ages or younger buried there. I remind myself that it’s only in recent generations and in a country as fortunate as our own that parents can expect to raise all their children and to predecease them.

So I set out to write about my experiences as a mother who has lost two of her three adult children to horrific diseases. I voluntarily reentered those years of anxiety, trauma, and hope to better under- stand what transpired there. I realized that those of us who survived have been profoundly changed, and so I have written partly for my own healing and partly to share with others the learning and strength I discovered. Many people did not understand my spending so much time writing about this, especially my husband, Richard, whose style of grieving was entirely different. Rich and I finally came to an under- standing several years into this project.

Rich and I are both behavioral health professionals. We share a conviction that many mental health problems are caused by a lack of connection to people’s spiritual selves. In our work and for our own personal development, we use the community- building tools of dance, song, and story. In the jargon of our professions, this is called using the arts for individual and social transformation. For ten years we founded and co-directed a behavioral health care clinic called Iatreia Institute for the Healing Arts. This was the name of the clinic from 1987-1997 until we were purchased by Corphealth. Then it became Iatreia, Inc. You’d think that the experience of our professional careers and the synchronicity of our shared beliefs would have given us some special insight into each other’s grief. Not so.

Five summers ago, Rich sent me off to participate in a writers’ workshop with the comment, “I hope someday you will find some- thing more pleasant to write about.” When I returned from the writers’ workshop in Iowa City, held a couple of weeks after the town had suffered a significant flood, I brought back two empty sandbags, like the thousands of bags of sand stacked as barricades against the rising waters. My empty sandbags had been decorated and made into handbags by artists in the com- munity and sold to raise money to help the local Habitat for Humanity fund the cleanup efforts. At home I laid out my decorated sandbags alongside a folder of my writing. “My writings are my sandbags,” I told Rich. “We have to make art out of what happens to us, or at least some- thing useful, and we don’t get to pick what that is.”

People have asked me how I’ve survived all the tragedy and loss in my life. Perhaps I’ve written the stories of my journeys with my children, other family members, and my best friend to answer that question for myself. Witnessing how hard both my children fought to stay alive and all that they were willing to endure to gain more life has defined my grieving process. I never wanted to dishonor them by wasting one moment of whatever precious life I am given.

Like a prospector searching for gold, with the help of my journal, I have panned and sifted through these experiences—of birth, death, and the places in between. I have shaken the sieve in such a way as to uncover, among the dirt, pebbles, and debris, the valuable shiny elements in these stories. This sifting and sorting has been, like the experiences themselves, tough at times, but also enlightening. I’ve come to appreciate the many ways that people confront illness, diagnoses, treatment decisions, and, yes, even death, and the many faces and masks of grief. And ultimately, I’ve come to see the demands made on me as a mother as requiring me to become a warrior mother. In our lifelong mother roles, whether our children are sick or well, young or old, like warriors, we engage wholeheartedly in a cause, and like spiritual warriors, we are asked to use our compassion and wisdom to help our children and ourselves grow and thrive through whatever life sends our way.

(from Warrior Mother – Fierce Love, Unbearable Loss, and the Rituals that Heal by Sheila K. Collins PhD.)

The Countries of Well and Ill

I almost finished my oatmeal this morning, a real achievement after nearly a week of visiting that other country Susan Sontag warned us about. Having dealt with difficult diagnoses and treatments in her own life, she suggested each person is a citizen of two countries, the country of the well and the country of the ill. A week ago, after consuming what I thought would be a healthy meal; a piece of fish and some vegetables, while my lunch mates ate meatball sandwiches and pizza, I was shocked to learn that I had purchased a passport to the land of the ill. It was a rapid and unexpected trip as I began noticing the new terrain of my insides while driving back from taking my houseguests to the airport.

 I hadn’t traveled back and forth across these particular borders for a long time and I found it difficult to translate the signals and symbols of my new physical state. Should I lie down? (that seemed advisable in spite of the fact I had a class to teach that evening). Is there anything I can or should eat? (No food looked or smelled appetizing, though in the land of the well, I usually make sure I eat “something.” 

Throughout the coming days, naps seemed one of the only enticing practices, and being propped up on pillows, the only way to read or write. Soup, crackers and toast sustained my life but not my energy. Since I was hoping to return soon to the land of the well, I carefully rationed the amount of physical exertion I engaged in. (No walking the dog or zumba classes for example.) Finally last Saturday, after taking a three-hour nap to prepare, I went to a dance with my husband, which seemed to initiate the beginning of my return to the land of wellbeing.

Friends tried to be supportive by saying I probably needed the rest anyhow, after the past few busy weeks. I avoided responding that if I were going to have more opportunities for rest, I’d rather experience them in the feel-good land of the well, the country I’ve been fortunate enough to live in most days of my life. An increased appreciation for that fact, and the noticing of a Zumba classmate that I’d lost a few pounds are probably the real gifts in this past week’s foray into such foreign territory.