Illness is the great equalizer. It can strike anyone, at any time. This is the story of what happened to me, and how I found resiliency and joy in the midst of the crumbles of my life. In 2002, I was an active, healthy working mother of two, going through life as many of us do, from one activity to the next. The pace felt hectic at times, but my body was strong, my family healthy, and my career as a nurse fulfilling and inspiring.
Then the summer of 2002 arrived. A strange and virulent illness took me down for over a week with relentless symptoms of high fevers, severe body pain, migraine-like headaches, chills, and vertigo. Unable to go beyond my bed and the bathroom, my husband kept a camel back filled, as I struggled to stay hydrated. Being a nurse, I remember thinking, “This feels like some weird tropical illness or disease. Something is very wrong.” I had no respiratory symptoms. It was like a summertime flu, but no pneumonia-like component. A visit to my primary care doctor four days later came back with a “self limiting illness,” likely viral in source. Relieved to hear this, I was sent home with a “Z pack” antibiotic. My bulk of my symptoms very graciously resolved, and I went back to life as usual.
But things were not “as usual.” Things were off. Clearly. Yet I chose to ignore the whispers of my body, and pushed through the fatigue, balance issues, mild aches, immune issues, brain fog, and auspicious signs from my body. The symptoms were intermittent, generally mild, and did not keep me from functioning.
Until they did. It was October 17th, 2004. During the fall of 2004 my symptoms had been increasing at an alarming rate. New ones were cropping up, like the attention grabbing pain and tingling on the soles of my feet. By the summer of 2004 I was forcibly dragging myself to the gym for my hour long stair master sessions following by yoga and weights with incredible difficulty. My once pleasurable and energy generating gym sessions were becoming shorter and shorter, as my body was feeling weaker, and deep fatigue was becoming the norm. My once beloved yoga sessions became challenging, as my balance faltered, and my body struggled. I required recovery time from my work days, often too depleted to sit up and eat dinner when I got home.
Yet I pushed. And I pushed. And I pushed. Until it all came tumbling down. That morning on October 17th, 2004, once again at the gym—clearly not listening to my body as it was breaking down—I attempted a headstand after a short stair master session, and the whirling vertigo kicked in more viciously than ever before. Unable to drive or really move without vomiting and reeling from the spinning, my husband came to the gym to get me home.
The next several months were a series of doctor visits to every specialist imaginable. The concluding diagnosis was “chronic fatigue syndrome” (CFS), sometimes called “myalgic encephalomyelitis” (ME). Really? That is all you have for me? But what is the cause? How do we treat it? By this point I had had to take a 3-month medical leave, as my body was completely broken down. The next fierce symptom to come in, although it was really waiting in the wings for weeks, was depression. Having had episodes of clinical depression in my past—successfully treated with medication—this became the go-to label of many of my practitioners, despite my assertions that this was unlike any depression I had ever experienced in the past. I will never forget when I finally got to a well-respected, Boston area psychiatrist who confidently told me, “All of your symptoms have all been from depression. This is very treatable.” The relief I felt was indescribable. I was overjoyed! Yes! Now I can get better! Bring on the drugs! So we went deep into medications. My body, once able to tolerate antidepressants easily, seemed to experience every side effect and more. Crap. What is happening? Finally, after several modulations, we landed on a cocktail that gratefully brought back my sleep, appetite, and the ability to feel a little bit of joy.
But…. The deep fatigue, the muddling brain fog, the sailor like gait of dizziness, oddball immune issues, and the neuropathies of my feet were still there. It was wonderful to have an abatement of the depression symptoms, and feel my fighting spirit again. But it was terrifying to still be so debilitated and unable to be active, as before. I was able to go back to work as an oncology nurse, transferring to the radiation therapy department from the more vigorous setting of the chemotherapy clinic. Every ounce of my energy was devoted to my work and my children. I become a master at “energy conservation” to manage my life. Never again was I able to go back to the gym, ski, play tennis, ride a bike, socialize in the evenings, travel easily, work more than 24 hours a week without huge consequences, or participate fully in life, as I knew it. The losses. The losses involved with chronic illness are too numerous to list, and unique to each person. But I adapted. I dug in. I learned. I listened to what life was trying to tell me. I surrendered and opened to the whispers of life.
Something magical happens with surrender. A peacefulness comes through. The peace that passes all understanding benevolently steps in (Philippians 4:7). A deep inner calm begins to soothe the body, the mind, the spirit. The need to fight “what is” turns into a “flowing” with reality and unpredictability. It was a work in progress for me. I was a work in progress. But my spirit was beginning to rise up and take the lead, as never before in all of my life’s struggles, and there had been many.
I recognized her, my spirit. She was so light filled, so wise and comforting, and even joyful in the midst of brain tranquilizing fogginess, dizziness, pain and fear. I recognized her as the compassionate force that had been guiding me my whole life. She felt like home, that true “home” where everything makes sense and is all right, no matter what is going on. She was my light.
I welcomed her in like never before. Instinctually aware now and awakening— brushing off the cobwebs of life’s conditioning—I felt myself growing into my light, my spirit, my soul. Not yet “standing” in this light—but clearly feeling her embrace—I “did my work” towards healing in every way that I could, but now with a more measured and grounded energy. I continued to see specialists and practitioners of all sorts, traditional and alternative. My scientific mind joined forces with my light-filled spirit, researching all that I could about CFS/ME. I embraced daily meditation and visualization, particularly imagining my body and my cells healing, strengthening, restoring, reweaving, and transforming. I welcomed—albeit sometimes reluctantly—nutritional adaptations rich with nourishing foods. Practices that turned on my body’s innate healing mechanisms became an integral part of my life—journaling, nature bathing, social connections (as much as I was able), traditional therapy, spiritual healing, daily gentle stretching, positive affirmations, gratitude—all of it. I tended to emotional wounds—past and present—that yearned for attention, integration, and release.
Slowly I felt myself “sitting up” in the power of my light. Still not “standing,” but fluffing into the light, the weave of my being starting to glisten with resiliency and strength. My capacity for joy grew, in spite of my changed life and daily symptoms. I relished moments with family, friends, patients and colleagues, and life in general, as I never had before. Illness will do this to you. Uncomplicated gifts become anchors. Watching birds from my living room couch, appreciating the vastness of the catalpa tree of my front yard, taking in the silence of snowfall, soaking in the embrace of my husband, the hugs of my children. These became the cherished fabric of my life, more healing than anything. The ability to simply be, versus “doing, doing, doing” is where my real transformation occurred.
And then it all came crashing down, again, yet in a whole new way, on April 15th, 2013, the day of the Boston Marathon Terrorist attack. The events of the bombing and the subsequent Watertown Shootout 4 days later set into motion a cascade in my life that changed everything. Living in Watertown, a few blocks from the shootout, waking up to the SWAT team searching our home, and later the massive gunfire as the suspect was apprehended from the boat, set off stress in my body and reignited childhood trauma that blew my body’s “safety setting” to smithereens.
A week later I succumbed to a vicious shingles infection affecting several areas on the left side of my body. My immune system must have become very busy fighting this infection—magnanimously I might add—but whatever symptoms I had had in the past, and continued to struggle with daily, returned with a vengeance.
My nursing career, as I knew it, was over. I never again was able to work in my beloved oncology nurse role. I tried. Oh, I tried. Yet another 3-month medical leave. Hoping and praying that my health would improve. The shingles resolved beautifully, but the deep fatigue, debilitating balance issues, tranquilizing brain fog, and once again, relentless depression were back. And intractable. And as before, the depression was treatable, but this time requiring a more vigorous treatment of 12 weeks of transcranial magnetic stimulation. And as before, the other troubling symptoms continued, even once the depression was controlled. But this time, the symptoms were even more magnified and eviscerating in nature.
From 2013 to the present, I went into full on healing mode. I dug even deeper into all modalities that I knew would support healing and resurrection, as much as possible for my dear body, that was fighting so hard for me. I discovered the emerging field of epigenetics, the works of Lissa Rankin, Deepak Chopra, Joe Dispenza, Dawson Church, Kelly Turner, and others who described evidence based practices for encouraging “spontaneous remissions.” I embraced all I could do for this healing. And slowly I went from being couch and bed ridden (for most of 2013) to re-emerging just a bit. With the help of my new handicapped placard I was able to make a few dashes to the store, cook a little bit, and be available for my daughter, now in high school.
My body required frequent and clear periods of daily rest (and still does), but my spirit was growing, shaking out more cobwebs, and rooting even more deeply than ever in my power. My light. Anchored. Upright and standing tall. Standing tall in my light.
In 2015, the mystery of exactly what this illness was, beyond CFS/ME became clearer. An astute physician in Boston found Lyme Disease, Bartonella, and Babesia. Wow. Whoa. It all made sense. That was that crazy and bizarre illness in the summer of 2002 that kicked everything off. My new doctor confirmed this. I received further corroboration of these diagnoses through the Dean Center for Tick-borne Illness at Spaulding Rehab (affiliated with Massachusetts General Hospital) later in 2015. Relieved to finally get to the root cause of this journey of illness, I dove deep into antibiotics and other treatments—herbs, supplements, homeopathy—for several months. Nothing was truly moving the needle. My doctors told me that the spirochetes and infections were lodged deeply in my neurological system, from the many years of untreated Lyme and co-infections. “Life’s dirty needles.” A term I once heard about tick bites. Yes. They sure were for me.
So, my spirit grew some more. I dove deeper into my healing practices, epigenetics, research, flowing and flowing, accepting, appreciating what I could do, not what I could not. The cobwebs blowing away, like dust back to the earth. Standing tall and strong, I could feel my light powerfully guiding me, cheering me on. I found me, my true self, unburdened and free. I found that place that powers you from within, with the best kind of energy. Maybe not the kind of energy that allows for a great work out or day on the ski slopes, but the kind of energy that reweaves the fabric of one’s life into a resilient and whole human being, scars and all.
Finally, in August of 2016, I found the Lyme Magnetic Protocol (LMP), the treatment that began to really move the needle of my healing. My gifted LMP practitioner tackled the pathogens—layer by layer—while supporting my body’s pathways of regeneration. My physical body began responsively shedding noxious bacteria, viruses, and fungi with relief and eagerness, without the collateral damage inflicted by antibiotics on my gut and brain. My immune system began perking up and regaining balance. Thank goodness. It is my belief that a hearty immune system is vital for overall well-being, and that all of us are exposed to a myriad of pathogens—Lyme or otherwise—that can wreak havoc on us, at any time. With an intact and balanced immune system, the virulent little critters are kept in check.
But my neurological symptoms—balance issues, fatigue, and neuropathies—still have a way to go. Yes, they are better. My practitioners and I are working on it, as we very slowly taper down medicines that contribute to fatigue, sedation, and dizziness. This will take a while. As with everything on this journey—patience, perseverance, experimentation, and faith—are mandated virtues. And ones that may take me a lifetime to master, if ever I do.
In the fall of 2017, the real magic began. With my true north firmly guiding me, I launched into a year long’s training to become an integrative nutrition health coach through the Institute for Integrative Nutrition. It was the perfect amalgamation of my lifelong love of nutrition, my nursing career, and the hard-earned wisdom from living with illness. I graduated in November of 2018 with a vision of a coaching practice, future workshops, kitchen sessions, speaking engagements, and a dream of one day writing a book to make sense of this whole perplexing journey. I named my new business “Vibrant Health Integrative Nutrition,” as vibrancy and health have been my visions for myself, and what I wish to share with others.
Standing tall in my light. Indeed. We all have a story. We all have challenges. We all come upon twists and turns that throw us out into left field in the course of this mysterious thing called life. My mission is to help others access their light. Their power and inner wisdom. This guiding beacon is inside all of us, delightfully ready to escort us through life, if we take the time to listen and tune in. Imagine a world where everyone is able to share their gifts and unique talents unapologetically. Imagine a world where people are tapped in and turned on to the fullness of their power. A world where everyone is standing tall in their light.
Don’t wait for illness or some other unforeseen life occurrence to find your own wonder and bubbling well of joy, your resilient spirit. Like a plant, orient yourself toward the light. Illuminate the world.
I would like to end with a quote from the wise Marianne Williamson:
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
I am not only “standing tall” in my light now, I am walking in my light, my power, my beauty, my purpose. No, this does not mean I am immune to life’s curve balls. But it does mean that for right now—the moment that truly only matters—I am strong. I am healed. I embrace my life, just as it is.