Just keep moving into the light.
This has been my mantra for years, and although I’m not always able to sustain this, I know the light is always there, even when symptoms overtake my mind and body.

I was bitten by a tick in the summer of 2002.  I never saw the bite, but in the midst of a lovely summer, I became violently ill with high fever, extreme body aches, pain on the bottom of my feet making it difficult to walk, dizziness, bedridden.  The acuity of the illness let up after a few weeks, but a bevy of odd symptoms began emerging and building over the coming months. 

By 2004 the convergence of symptoms combined with my tenacious will to keep living my life as fully as I had (working, raising children, exercising, community and social involvement, travel) brought my life to a screeching halt, and I was forced to adapt to what doctors called “chronic fatigue syndrome.” It was an embarrassing diagnosis, and one misunderstood by most people.  I rarely shared it with colleagues, friends outside of my closest circle, or certain family members.  At times when I ventured to do so, a common retort was “I’m tired, too,” as I’d watch the person fully functioning in life while I spent hours resting in between work, family, and social activities adapted to my amended life with ME/CFS.  Thankfully my husband never doubted that something was intensely wrong with my body.  He’s been loyal and at my side throughout this journey.  He’s one of the greatest gifts of my life.  

It was not until 2015, after many years of visits to specialists and practitioners of all sorts (traditional and alternative), that I was diagnosed with Lyme and co-infections (Babesia, Bartonella) by an astute infectious disease physician in Boston. More treatments followed with antibiotics and other interventions, but unfortunately, the cascade of symptoms from debilitating fatigue to balance issues and brain fog had taken hold of my life.  My neurological system was ravaged by the insidious spirochetes.  Although continually doing my best to take care of myself and heal, I was never the same as before that fateful summer of 2002.  

Like so many of us, living with ME/CFS comes with a parade of losses.  For me the most gut-wrenching have been having to step away from a cherished 25 year oncology nursing career and losing the ability to be active within my family and community.  Oh how I’d love to ride a bike again, attend a yoga class, travel, dance, and most importantly, fully participate in my family life.  I’m incredibly lucky to have family and friends who are still at my side.  And I pray that what I can give is enough.  My son once said to me, Mom, you don’t have to DO anything. Just your BEING is all we need.  I’ll never forget those words, especially when I don’t feel like enough at all. 

Which brings me to the LIGHT, the lessons, spiritual growth.  Once I was able to surmount the deepest grief and anger of a body gone awry, something inside of me softened, and I could hear the gentle whispers of grace, and wisdom poured in.  It felt like a big exhale, and the mantra of JUST KEEP MOVING INTO THE LIGHT guided me home to my inner sanctuary of peacefulness. It’s a daily practice, one where I’m often off path, but that’s okay.  The most important thing for me is to stay awake, and keep listening.  

Here are a few nuggets that have sustained me over the years:

Find the comfort in the discomfort.  This was big for me.  Sometimes symptoms completely overtake me. This is when I just need to be quiet and surrender, remembering that the rough moments DO pass.

Lean into all the little joys of each day.  Really feel them, savor them, stock up that positivity to hold me through the rougher moments of each day. Gratitude can shift a lot.   

Keep learning and employing all the pillars to support my body, mind, and spirit: nourishing foods; social supports (even if just short phone calls to beloved friends a few times a week); cuddling with my kitties; meditation and quieting the mind; mindfulness; humor and laughter; hugs from loved ones; warm and comforting baths; journaling; music; connecting to God and spiritual practices.

It’s okay to cry, get angry, feel despair. Just don’t get stuck there. After all, emotions are “energy in motion,” meant to be felt and released.  

Be exquisitely gentle with yourself.  Sometimes I imagine my sweet, departed mother or a circle of angels lovingly caring for me and comforting me.  This really helps when I feel most alone.  

Find your allies; let go of toxic people, places, or things. They are not worth your energy.  

Focus on what I can do, not what I can’t.  This is a hard one for me. In recent years, perhaps due to the aging process, it’s rare that I can walk beyond 3 or 4 houses up the street a few times a week, even on a good day. I see my muscles wasting, decreased capacity for the slightest of activities, fatigue deepening. Yet, I try, as best I can, to savor that I’m still in my home, can get up the stairs, make a little food, think clearly (most of the time), and receive and give love. I can still do all of that!

Bathe in nature. Sunshine; looking at the sky; birds; the tree outside my window; vibrant and colorful flowers; plants in my home; getting outside, even if only for a short time in a chair. Nature is so healing, and shifts everything for me. 

Flow, Flow, Flow;  Let It Be is such a wonderful, inspiring Beatles song. It’s all about flowing, non-resistance to that which we cannot change. Play this song for yourself, and immerse your entire being in its wisdom.   

Finding balance with what life presents. It’s a tightrope for sure, leaning into the light, as I allow myself to feel the challenges of illness. This is not a pollyanna practice of stuffing away rough feelings and moments, but rather feeling what needs to be felt and processed; flushing the darkness with radiant, loving light; and moving back into the Light. It’s a balance of honoring and releasing emotions with hope and grace.

I won’t pretend to have mastered these practices, but the more I remind myself to lean into Light; keep aligning with the Light, the easier it becomes. What truly matters is so clear to me, and I trust that there is a bigger picture at play.  I believe we are all a part of a woven tapestry of goodness and Light. We are all here to lift each other up. We are all the Light.   

So, beautiful ones, I pray that Light comes pouring into your being, on all levels. That no matter what your path may be, you’re able to hear the whispers of your own Light within, showing you the way through, sending you bright gifts of wisdom, holding you up, helping your spirit to soar. You are so beautiful, just as you are.  

With much love,

Gretchen Dunoyer

Watertown, MA

June 2024