Living with a chronic illness is a reductionist endeavor. As pieces of us slip away and our lives diminish, we can lose sight of what it means to be a human. We are wired for connection to others, joy, love, pleasure, beauty, adventure, mystery, and more. Over time, a benevolent form of amnesia has allowed me to slip under my covers, removing my frame of reference for who I used to be before I fell ill, blunting the losses. My illness has shown me some mercy in this way, but I scarcely recognize myself now.
Chronic illness also reduces us to a grab bag of symptoms. We spend hours online pouring over clues that might lead us to approaches not yet tried. We lurch from one trendy treatment to the next, spending vast fortunes as we chase after the latest fashionable remedy. We do this because, occasionally, something sticks to the wall and gives us a sliver of function back. Some decisions do not come lightly, such as the interventions that carry risk and expense – B-cell depletion therapies (e.g., Rituximab), Ampligen (a toll-like receptor 3 agonist), and surgeries to address structural/spinal problems. As this disease extends its tendrils, the stakes become higher.
Rather than gaining more clarity over time, confusion and heaviness set in, like the thick tule fog that blankets the Great Valley of California in the winter. You can only see what is directly in front of your nose precisely when a more expansive perspective is needed.
I recently wrote a blog about my experience with invasive cervical traction (ICT) and the profound gains I experienced. When speaking to my dear friend Elizabeth, who had not read the piece yet, she told me she was looking forward to seeing my description of the experience, especially that moment of elation when the traction weights were added. I quipped it was my “come-to-Jesus” moment and imagined that rainbows were erupting out of the top of my head. I felt like I was floating in a sea of ecstasy. Yet somehow, I managed to bury the lede in my blog; I reconnected with my life force for a few minutes. I failed to write about any of this.
She asked, but what was that experience really like? I told her she could look at the various symptoms we had chosen to track during the procedure and see the improvements, but it would miss my experience by a wide mark. Why? Because life force cannot be reduced to a list of symptoms.
My life force comes from a concoction of curiosity, passion, desire, longing, and laughter. Dr. Bolonese (thankfully) did not ask me how much my passion for life had improved during traction. Sometimes we have to reverse engineer something to understand it. I realized the synergy of symptom alleviation allowed for my elation. The complete lifting of brain fog gave me back the organ that most defines who I am. The lifting of fatigue made me feel energized and filled with endless opportunities. I wanted to climb mountains like I used to do before getting sick. The resolution of orthostatic intolerance (for me, it is an oxygen-to-brain thing) allowed me to sit tall and tap into my body’s poise. Put all of that together, add some pixie dust, and your lifeforce has returned the next thing. For a few minutes, I felt like the “old” me.
My profound experience during ICT and gains after my surgery reset my baseline to a healthier me. A shifting baseline in chronic illness is tantamount to the boiling frog analogy, except instead of a dying frog, our sense of self is lost. Over time we normalize our symptoms and come to accept them as a part of who we are.
I used to lecture about shifting baselines worked when I taught conservation biology. We discussed a story in the newspaper about how 50% of all remaining endangered California tiger salamander habitat was being conserved or restored as part of a mitigation effort in Sonoma County, CA. Sounds good! However, the article failed to mention that 90% of tiger salamander had already been lost. It’s like saying that you saw a 50% improvement, but your starting point was at 10%. In my opinion, the correct denominator is how we felt before we got sick, or at least a point in time when we last felt like ourselves. Or course, any gain is cause for celebration, and I believe we can find fulfillment at any level of function, but I also think it is important to not lose sight of who we were in health.
We are bigger than the sum of our symptoms and need to remember this, even if the insights and glimpses are brief and gauzy. It could be a long-forgotten scent (sagebrush after it rains), a refrain in a song, the smell of a favorite meal, or lines of poetry that take us to the inner core of our humanity.
Some people were born ill or became sick as children or young adults – I have deep compassion for people trying to figure out who they are without knowing or remembering what it meant to have more function.
My ICT and post-surgical experience helped me to find my reference point. If brain fog can disappear, there must be levers that control it. Treating my mast cell activation syndrome has improved my brain function. After my surgery, I experienced neurological meltdowns and paid close attention to the triggers. I have expanded my energy envelope simply by recognizing the stress of trying to dive back into my life. Physical therapy and strength training have put some mitochondria-rich muscle back on my frame.
Love, play, adventure, exploration. I have lost these core elements and am sitting in the quiet spaces between indecision about who I am and the longing to mold a life that features the things that allow me to feel free. I am no longer in my ICT ecstasy moment, but the experience has rekindled my desire to claw back to a version of me that has more confidence, more longing, and more knowing.
My dear friend, who has been ill since birth and always knows the right thing to say, left me with this excerpt from a Rilke poem.
“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers which cannot be given to you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.” ~ Rainier Maria Rilke