fighting the good fight

             A couple months ago as I took stock of how I felt—mentally, emotionally, physically—I realized how much has changed during the past year.  About a year ago, I left the small farm, on which I had been working and living, due to extreme fatigue, overwhelming pain, and depression.  I wanted to do what I had set out to do—to work a full year on a family farm so that when I became a political agricultural hotshot, I could back up my ideas with firsthand experience.  But I could no longer ignore my body as it screamed out, demanding to be heard.

            A few months prior to leaving the farm, I had been given the diagnoses of Fibromyalgia and Chronic Fatigue Syndrome.  The diagnoses seemed to fit—widespread pain, problems sleeping, depression—but I couldn’t accept it. I had such little energy I could only move for a few hours a day, but at least I had a legitimate excuse.  But that’s how I saw these illnesses, as an excuse, not something I wanted to learn to live with.  I was far from accepting this fate.  I wanted to get better so that I could hike the Appalachian Trail, travel through Africa, and absorb knowledge so that when I fought for what I believed, no one could refute my arguments.  Although these dreams are idealistic on anyone’s to-do list, these were the dreams for which I hoped and lived. But as everything became too great to handle, my dreams began to mock my slow, painful body. 

            By this time, I had been seeing a Physical Therapist for six months.  When I arrived at my appointments after working in the hot fields, I could hardly do any exercises.  After leaving the farm, I could save my energy for my exercises, and I did them religiously.  Soon, the pain in my legs began to decrease, and then the discomfort in my lower back diminished as well.  I saw a glimmer of hope returning, but the pain in my upper back and shoulders and neck intensified. 

            Trained in Postural Restoration, my Physical Therapist treats her patients differently than the PT I had seen when I was twelve.  No matter what the complaint, she begins treating patients from the legs up.  She doesn’t just view her patients as muscle and bone, but as people with feelings and emotions, in a body whose systems are interconnected.  Therefore, if a problem is too stubborn to respond to her treatment, she looks more closely at the feet, eyes, and mouth. 

            Starting with my feet, my Physical Therapist determined that I could use orthotic inserts—those made especially for those doing Postural Restoration—and better shoes.  I bought a pair of Asics running shoes, being sure they met her strict parameters, and got my first pair of custom-made orthotics.  After a few months, although the inserts had been helpful and my feet were happier, my PT decided that we could do better.  I went to an ophthalmologist to have my eyes checked for the first time since grade school when the school nurse gave vision tests in the hallway.  Although I retained my hawk-like vision, I was deemed in need of Plus Performance Lenses to relieve eyestrain and fatigue.  With these new glasses, my eyes were much more comfortable, but it still wasn’t the magic fix we had hoped it would be.

            Finally, after a year of seeing my Physical Therapist, she sent me to an Orthodontist in Virginia to be evaluated for Temporomandibular Joint Dysfunction.  After being poked and prodded around my neck and head, I had x-rays taken of my mouth and MRIs taken of my TMJ.  The verdict was that my TMJ was dislocated on both the right and left sides of my jaw.  The solution was that this special Orthodontist would give me an intraoral appliance to, first, relieve muscle spasms and put the dislocate discs back in the joint and, second, to correct my bite so that the discs do not dislocate again.  The hope was that by treating my TMJ Dysfunction—wearing the appliance 24 hours every day—my persistent back and neck pain would dissolve. 

            I suppose it would be a bit extreme if I said that wearing this could be added to Dante’s already existing levels of hell, but it is extremely difficult and frustrating. The appliance covers all eight of my lower back molars with a hard acrylic material.  And every six to eight weeks I head up to Virginia to have my bite adjusted.  This is all fine and well, but adjusting the placement of the lower mandible also effects the cervical spine placement, effecting, like toppling dominoes, the rest of my spine and all of the muscles and nerves connected.  All of this creates a very uncomfortable few weeks until my body gets used to its new position. 

            Presently, the appliance is built up in such a way that when I close my mouth, there is a centimeter gap between my upper and lower teeth and only half of each upper molar is in contact with the appliance—which is all I have to grind my food.  The first month I lost more weight than I could afford, but I am getting better at finding soft foods.  With every adjustment, with every day, I am hoping that this only lasts the year the Orthodontist predicted.

            A year ago I wore moccasins, looked directly at pages in a book, and ate whatever I craved.  Now, I wear shoes with orthotic, stare through magnified lenses, and eat applesauce and yogurt if I need a snack.  Although it’s not fun, when I take stock of how I feel now compared to a year ago, I wouldn’t go back.

            A couple of months ago, my diagnosis changed again.  I switched doctors because I was sick my words being brushed away, and she sent me to whom she thought was the best Rheumatologist in the area.  After another round of x-rays (18!) and blood tests, we discussed the results and she gave me a new label: Sjögren’s Syndrome.  This illness is often misdiagnosed as Fibromyalgia or Chronic Fatigue Syndrome and my symptoms fit this even better.  My doctor explained that autoimmune diseases are very difficult to diagnose, since they all have overlapping symptoms.  She said that this might not be the last label I am given, but I have decided to not worry about that. 

            When dreaming of hiking and traveling and fighting for my causes, I never thought I would first have to fight to have a so-called normal life.  But I am fighting the good fight and I have a whole team on my side—a Physical Therapist, a Psychotherapist, an Osteopathic Doctor, a Rheumatologist, and my family and friends.  Although I would never have chosen this path, it’s the one I have to follow.  So I do my exercises, I read, I write, I paint and create, I practice mindfulness, and I marvel in the little things—the fluttering butterfly, the rhythmic rain, the changing wind, the pastel sunset, the softness of my cat’s fur, the antics of my parakeet. 

            Each day when I wake up, I am not sure how my body will respond, but I get up anyways.  Some days I become frustrated and I cry and I want to give up.  But when I remember how far I’ve come this past year, I realize I have one more thing on my side—hope.  When I was twelve, I wrote a paper on the word “hope.”  My closing line went something like this: “When people utter the word “hope,” they give themselves a future.”  And how exciting it is to have found it once again.

an openhearted, kind awareness of the present moment

            Almost two months ago I started the Mindfulness-Based Stress Reduction (MBSR) course at Duke Integrative Medicine.  Over the past year, I have worked with many wonderful health practitioners who have led me to a deeper my understanding of my own inner-workings.  As I gained insight into the connections between emotion, stress, trauma, psychological pain, and bodily pain, my therapist suggested I look into the mindfulness class.  At first, I wasn’t ready to commit to such an exploration, but after a few months went by, I took the plunge.  Mindfulness can be difficult because it goes against everything we have been taught or conditioned to believe.  Instead of pushing ourselves into a bigger and better future, mindfulness cultivates an openhearted, kind awareness of the present moment. 

            Duke’s MBSR class is based on a program created by Dr. Jon Kabat-Zinn, at the University of Massachusetts Medical School.  In 1972, he began conducting research on the mind-body interaction in healing, on clinical applications of mindfulness meditation practice for patience with chronic pain or stress-related disorders, and on the effects of MBSR on the brain and immune system. 

            Stress, especially prolonged periods of stress, can have devastating effects on the body such as elevated levels of glucose and insulin, a weakened immune system, increased blood pressure, and digestive disturbances.  Chronic stress depletes endorphins, the body’s natural painkillers, which can result in more headaches, backaches, and arthritis pain.  If stress goes unmanaged, it is associated with increased illness and mortality.  However, through cultivating the “relaxation response,” as opposed to the flight or fight response, a person allows the body to discharge tension that has built up due to constant stress. 

            Scientific research continues to illuminate the benefits of mindfulness.  Studies have shown that mindfulness can affect the structure and neural patterns of the brain by increasing activity in the left prefrontal cortical region of the brain, where greater activity is associated with increased well being.  Also, mindfulness meditation has the potential to improve immune function and levels of cortisol in breast and prostate cancer outpatients. The eight-week MBSR course has been shown to halve the incidence of relapse in depression in those recovering from a depressive episode.  In addition, the class potentially may increase self-compassion and reduced stress in participating individuals.  Increasingly, mindfulness practices are being integrated into patient health plans.

            Before beginning any mindfulness practice, the “seven essential attitudes” must be understood.  First is non-judging, by which one is an impartial witness to the constant stream of judging and reacting to both inner and outer experiences.  The habits of judging and reacting separate us from directly experiencing each moment of our lives.  When judging arises, don’t judge the judging; just acknowledge that it is present.  Next is patience, allowing things to unfold on their own schedule.  Patience leads us to maintain a stronger connection with each moment as it unfolds.  Third is beginner’s mind—thinking that we understand the present moment keeps us from experiencing its beauty and richness.  To practice beginner’s mind is to experience each moment as if we are experiencing the world for the first time, like a child feeling her first drop of rain.

            Also, as you become more aware of your life, you must learn to trust yourself and your feelings in order to understand what it means to be yourself.  Next, it is important to cultivate a non-striving attitude, to pay attention to whatever happens without striving to change things.  If there is a sense of striving, then notice that it is there, without judging.  In order to achieve your meditative goals, you must paradoxically back away and focus on accepting things as they are.  Next, one must cultivate this acceptance, this willingness to see things exactly as they are in the present moment.  The last “essential attitude” is letting go, or letting be.  Often, we cling to beliefs about ourselves, others, and situations, which obscure the true essence of each moment.  Through mindfulness, we learn to stop focusing on these ideas and just let our experience be what it is.  By becoming aware of the attitudes of non-judging, patience, beginner’s mind, trust, non-striving, acceptance, and letting go, you may already find relief from daily stress.

            Living in such a fast-paced, egocentric society, I think everyone could benefit from Mindfulness-Based Stress Reduction—if not to gain insight into their own being, then to reduce their stress and improve their health.  I believe that if everyone practiced mindfulness, the world would be a better, more tolerant and caring, place to be.

horses were my safety net

             About thirteen years ago I felt something start to shift within myself.  I couldn’t put my finger on what exactly was happening, but I knew that I felt a physical pain that was not “normal.”  My own definition of “normal pain” is a tightness, a pinching, a burning, or any uncomfortable sensation due to harmful circumstances; or it is the deep fatigue and soreness after engaging in a physical activity.  This “not normal” pain I was feeling was in my back and shoulders and neck, where many people hold their stress.  This pain would not go away, it was always with me, which did not seem normal to me.  But, as a twelve-year-old, I couldn’t imagine what was really going on.

            At this age, bodies are changing, hormones are revving up, the kids in my grade started to form tightly knit groups of friends, and I felt confused.  My body began its chronic aching and I didn’t know where I belonged.  In all of the groups, whether they were labeled “popular” or “nerds,” there seemed to develop a kind of code—who to talk to and who to ignore, certain styles of clothes were accepted and others were looked at in disgust, and gossip was rampant.  To me, they all had a superficial air and I didn’t want to be superficial.  I was trying to figure out my own individual identity apart from the pressures of the seventh grade social rules. 

            Whether I marginalized myself, or other intentionally pushed me aside, I cannot recall.  This isn’t to say they I didn’t have friends, because I did.  It’s just that, they seemed to change year after year depending on whom I saw in class.  If I didn’t have classes with the friends I had the year before, then I was no longer included in the group.  And that hurts.  Eventually I became a part of this kind of oddball group.  We all had good acquaintances with individuals in other social groups, but we weren’t in the inner circle of any of them. 

            However, although I was included, I still didn’t feel right, or secure, or safe, or fulfilled, being in this social group.  Our friendships would sometimes be close and confiding, but other times they seemed petty and superficial, only worrying about looking good in front of boys.  I cared about that, too, but I wasn’t willing to sacrifice my own sense of self to do so, so it was hard to play along.  But, what did I expect?  We were in high school.

            I had been riding horses for years, beginning when I was eight.  I remember lacing up my paddock boots and stepping into the barn to be greeted by the sweet smell of hay and horse.  I rode when it was cold, I rode when it was hot, but I was always happy to be there.  It was different from the world of academics and clicks and I bonded deeply with the horses.  There is something to be said about being in the saddle and feeling the stride of such a beautiful and powerful animal beneath you.  And grooming the horses was a kind of meditation, as long as I wasn’t running late, of course.  But I loved it.  In this world, I was safe, and the horses were my safety net.

            When my back started hurting, riding no longer gave me a sense of strength and equanimity.  Something that used to give me such joy started to become hard and cause more pain.  This was awful for me.  I tried to keep riding, but the other riders in my class had seemed to form their own social group.  They all owned their own horse and went to shows on the weekend.  I was just as good of a rider as any of them, but I only did it for enjoyment.  Again, I don’t know if it was I who moved away from them, or if they intentionally did not include me in their circle.  I stopped riding shortly after that because the pain in my body was so great and the pain of being excluded took away my joy of riding. 

            How I do miss Love Bug, the little horse I rode for years.  She had been abused at a previous farm resulting in being head shy, meaning she didn’t like her head to be touched.  Every week I approached her slowly and calmly, to pet her and to slip her harness over her head.  Soon, she trusted me and no longer backed away, afraid.  In the beginning, she always ran out when approaching a jump.  I would be guiding her toward the middle, perched in the saddle, ready to give her the reins so she could stretch out over the jump when she would quickly run left, leaving me off balance.  After working with her, keeping only the best intentions in my heart, she and I became a great duo when covering a hunter-jump course.  We had a blast.

            Last year I met a man, a Happiness Consultant, in the coffee shop where I worked.  Instead of shaking my hand after introducing himself, he flipped it over and started inspecting my palm.  He looked at me questioningly and told me, if I may paraphrase, “You have a lot of love.  Right now, it is for animals, but they love you, too.”  I stared at him shocked at how deeply that had resonated within my being.  Then the Happiness Consultant told me that one day the right person would come, and I would know, and he would have so much love for me, too.

one unsteady foot in front of the other

            Sometimes I can’t help but feel completely unsettled.  It feels as if I am missing some key piece of information that would clearly illuminate things.  Then, I would have the answers to the questions that I have been asking all along.  I would no longer feel as if the ground upon which I am walking is shifting beneath my feet, about to open up and swallow me whole.  I tread lightly on these unsettled days, tiptoeing around, so as not to disturb the forces in this world that are balanced just so delicately that I am left to place one unsteady foot in front of the other.

            I lie in bed, morning light washing over the sheets and blankets, keeping my arms and legs and body warm and safe, in a cocoon.  My heartbeat grows stronger and faster, with the engrained memories of my past.  I take deep breaths to calm my rising anxieties and remind myself that this is another day.  This could be the day when things change—when the pain melts away and my strength and energy return and life is sweet and full of humor and possibility….  I roll over onto my side and push myself up.  I commit myself to the day by touching my feet to the floor and accepting the weight of my small but heavy body.  Every day starts the same.

            I have hopes for which I am afraid to hope.  I hope for the ability to go back to school to explore the intricacies and insights of taught knowledge.  I hope for a meaningful career, something that makes sense to me where order can be made, so that I may support myself.  I hope to have money and energy left over so that I may socialize with friends and create art.  I hope for a family of my own—for a loving, supportive, and understanding husband, and bright, happy, optimistic children.  I hope that I can bear those children and raise them to be safe in their own bodies and minds.  I hope for a house with lots of windows through which I can see butterflies, birds, honeybees, and dragonflies, flitting about my flower garden.  I hope for a piece of land to grow fruit and vegetables and to have chickens, enough to live from, with trails leading through a forest by a stream.

            But I am afraid to hope for these hopes.  My body feels drained of energy and strength.  Some days I can walk three miles, while others I can barely walk to the end of the street.  Two years ago I hiked rim-to-rim of the Grand Canyon.  It was a stunningly beautiful and physically draining hike.  But I did it.  Then I hiked fifteen miles through Snake Gulch before beginning a 4,000 mile solo road trip, driving and hiking nearly every day over the course of two weeks.

            Last year I started working and living on a family-owned organic farm.  Up at the crack of dawn, planting, weeding, cultivating, through the height of the day, and falling into bed at the end.  I did that for three months.  Then one night I started burning up and couldn’t sleep and my pain and stress overwhelmed me.  I could hardly get out of bed for two weeks.

            It’s been almost a year since that episode.  I worked a bit at a local coffee shop, but I could hardly do anything else.  My energy waxed and waned and finally I couldn’t serve coffee drinks any more.  I realized that the only thing I could do, which is perhaps the hardest thing for me to do, was to devote my time to understanding why pain and fatigue had taken over my body so that, maybe, one day, I could hope my hopes once more.