Remembering the Spiral

I have not attempted to write for seven months. I’ve been waiting for the “end”. I neat story with a beginning, middle, and end. I got COVID; I got worse; I gave in to rest; I recovered. I already know better than to believe this is how life works. While it would be just lovely if it were a series of tidy vignettes, I’ve long conceptualized life as a spiral. Continuously cycling and repeating. It’s not a flat spiral, it has depth. And each spiral is getting smaller. At the eye of the spiral is the truth of who I really am (i.e. love). With this conceptualization in mind, I will continuously learn the same lessons over and over until I no longer need to learn them. While it may feel like the same lesson, I am a different version of myself, so it can never really be the same. Nonetheless I held out hope.

I had cancer in 2020 and kept waiting until the end, so I could write a clean story about how I got cancer; had surgery; took a pill; and now I’m better. I did have surgery, then I had more surgeries. Then I spent the next year reacquainting myself with my body, until I realized that how I used to move no longer felt good, and I had to find a new way (I’m still searching). I did take a pill, for what was supposed to be five years, but I lasted 4 years and 4 months. I just had an overwhelming feeling that I wanted to be myself again, so I stopped. Six years later, I still have not written my cancer story as I imagined I would. It is not over yet, because I am still living it.

In October of last year, I got COVID. The acute phase was mild. Then aftermath was not. I became unstable, my energy and mood fluctuating wildly. It threw me into the most fearful time of my life. I fought it for almost two months. I kept trying to push through and every mood or energy dip would rattle me, convincing me this was never going to change. Intellectually I knew that I must rest, but something deep and strong within me fought back. I had been efforting so hard for so long, that was the most familiar state of being for my person to be in. The absence of this familiar way of being gave me a sense that something was terribly wrong. The voice in my head reminding me that if I don’t work, I won’t make money, and then how will I ever take care of myself? Then finally, physically, mentally and emotionally exhausted, I gave in to rest. I did not know how or when I would be better, but I knew the single most important thing I could do was rest. I also gave in to grace. Asking any force in the universe that could hear me, to please hold me, because I could no longer hold myself. In the background ran the track of countless Long COVID patients sharing their stories of never getting better, still.

When I ponder if there is any lesson to be learned from the pandemic, what always comes to me is rest. In Classical Tantra one of the five divine acts is forgetting. I learn the same lessons over and over. COVID gave me another opportunity to remember. I allowed myself to do less, I spent a few weeks with my parents doing very little, and when my mood or energy fluctuated, I learned to identify with it less. When I remembered how to allow, and not resist, I still had the fluctuations, I just didn’t go on as violent of a ride.

By February I felt cautiously optimistic, almost as if it were behind me. I slowly started adding in more physical activity and I was able to do more generally. Then I started injuring myself joint by joint. Until almost all of my body hurt. I felt tight and weak at the same time, like I needed to rest and wanted to move, was uncomfortable most of the time, and developed acute pain in multiple joints. I learned to sit on the edge of the bed in the mornings and talk to my body before I stood so that my hips wouldn’t give out. It felt as if my body forgot how to be a body.

Up until this point my PCP had not been at all helpful. I began to implore her to pay attention, it felt like begging for help. She finally ordered labs and imaging. She concluded I was hypermobile and sent me to PT without touching or looking at my body. PT didn’t have expertise in hypermobility. My PCP offered lists of things I could try that were no more helpful than a google search. I felt as if they had washed their hands of me. I began to feel like the problem. How many times had I heard this story from Long COVID patients-desperate for a healthcare provider who would listen. It was very easy for me to think my doctor did not care and did not want to listen. Yet I know that is not true. What is true is that six years after the pandemic, and despite efforts by many to raise awareness and care for Long COVID, our healthcare system is still not designed to evaluate and treat complex chronic illnesses. This is not an individual problem; this is a systemic problem. It breaks my heart.

I realized I needed specialists. Which meant I would need to pay out of pocket (a lot). I spent about two months searching, trying various providers, and waiting for appointments. Last week I ended up at a specialty practice that diagnosed me with connective tissue disorder and found me just shy of a formal diagnosis of hypermobile Ehlers Danlos Syndrome (hEDS). I saw a different specialist every day and the current list of providers I am seeing includes an MD, DO, PT, Physiatrist, acupuncturist, somatic experiencing therapist, and pilates specialist. It is a relief to see people who can very clearly see what is happening in my body and have the expertise to help me through it. Also I had a small (and not so small) breakdown after each visit, overwhelmed and confused by the path that lay ahead of me. Care coordination is not well funded, vitally important, and desperately lacking. I’ve spent many years of my career advocating for coverage of care coordination, because doing it oneself can be a part time job.

I went to a liberal college where many were interested in living outside the norms and systems of society. I always had clarity that I would work within the system to effect the change I wanted to see in the world. I did this from the heart of the system for most of my career. I had become a proud public servant. Then I was fired. I quickly launched a new practice and have been slowly coming to realize that I now live a fundamentally different life than I always have. Up until now, forces outside of me mostly dictated my life. I now practice spiritual intuitive embodiment, learning to listen to the forces deep within me that come from a place of love. I didn’t have any concept of how terrifying this would be. My whole life became destabilized, and I feel it in my bones.

It feels like I have a whole new system-both software and hardware. I don’t know how my body works anymore. I feel like a baby. I told this to my acupuncturist, and he said in Taoism, the goal is to return to a childlike state of curiosity and wonder, breaking free from the learned constructs of society. So that is where I am. Learning how my body works, how I work in this new life of mine. Remembering that I am love. On the best days, I am highly motivated, meditating, reading, writing, practicing, and studying. Feeling deep gratitude that I am so lucky I get to live this life. On the worst days I identify with the fluctuations and go on a wild ride of guilt, despair, and shame. Until I see the spiral. I remember that this is the point, and I am moving closer and closer towards the truth of who I am.